Rutter's Child and Adolescent Psychiatry Book 2

whole. As yet there is no clear evidence of which children with FTT might benefit most from such intervention. Sickle Cell Disease Sickle cell disease (SCD) is a common blood disorder of genetic origin. It results in red blood cells that when partially or totally deoxygenated form into sickle-shaped cells that may obstruct blood vessels. This may cause a lack of oxygen in tissues in a wide variety of locations. The medical complications include delayed growth and sexual maturation, pulmonary dysfunction, stroke retinopathy and chronic pain (Edwards, Scales, Loghlin et al., 2005). The condition therefore comprises pain, anemia, organ failure and a variety of other comorbid conditions. Pain is a core feature of SCD. The psychological difficulties this creates have been reviewed by Anie (2005). The ability of the child with SCD to cope with pain is crucial to their quality of life. A specific measure has been developed to assess these coping mechanisms (Coping Strategies Questionnaire – SCD; Gil, Abrams, Phillips, & Keefe, 1989). Using this measure, Anie, Steptoe, Ball, Dick, and Smalling (2002) were able to show that there were three coping patterns: 1 Active coping (e.g., distraction or increased activity); 2 Affective coping (e.g., positive thoughts and feelings); and 3 Passive adherence coping (e.g., taking rests and fluids). Pain severity was related to the use of passive adherence coping independently of other clinical markers of severity of SCD. The risks of developing behavioral problems and poor psychological health were higher for children (Hurtig & White, 1986) than for adolescents (Hurtig & Park, 1989). The evidence for an elevated rate of clinical cases of anxiety disorders or depression in SCD is equivocal when compared with non-affected sibling controls (Anie, 2005). There is stronger evidence of neuropsychological deficits arising as a consequence of the cerebral infarcts associated with SCD (Kral, Brown, & Hynd, 2001). Some children develop overt strokes and the associated deficit is determined by the site of the consequent lesion. For those experiencing silent infarcts identified only by brain imaging, the area primarily affected is the frontal lobes and the cognitive problems are usually associated with attention and executive function (Anie, 2005). Burns SCD is a condition where the child is faced with the problem of chronic pain. For children who experience burns there may be sudden onset acute pain followed by an extended period of subsequent pain. There are a range of psychological methods that can augment pharmacological pain relief (Stoddard, Sheridan, Saxe et al., 2002). The subsequent emergence of acute stress symptoms 1 month after experiencing a burn (primarily a scalding) was examined by Stoddard, Saxe, Ronfeldt et al. (2006) in a sample of 64 children aged 1–4 years. They found that there were two routes to acute stress symptoms. One was a direct reflection of burn severity (total body surface area [TBSA]). The other was via the parents’ stress reactions in response to the child’s demonstrated pain symptoms. There are clear clinical implications of these findings whereby attention to pain management and relieving stress in parents of children with burns of large body areas are likely to be effective. To identify the factors that predict how well a child will be functioning 6 months after a burn, Tyack and Ziviani (2003) studied 68 children experiencing 1–35% burns of TBSA. They found that injury factors (e.g., TBSA), premorbid child factors (e.g., psychiatric problems or learning disability), parenting factors (e.g., anxiety and depression) and demographic factors (e.g., age and gender) each made a significant independent contribution to functional outcome 6 months after the burn. A more detailed study of the emergence of post-traumatic stress disorder (PTSD) in children experiencing burns was undertaken by Saxe, Stoddard, Hall et al. (2005). They suggested that PTSD could arise via two routes. The first was via the impact of size of burn and the amount of pain experienced on acute separation anxiety in the children. The second was via dissociation, again being more marked the larger the size of the burn. These two psychological mechanisms could explain over half of the variance in PTSD symptomatology 3 months after the burn. Organ Transplantation There have been a number of studies on psychiatric aspects of organ transplantation (e.g., liver and kidney) in children (for a review see Qvist, Jalanko, & Holmberg, 2003). The main set of studies are those concerning children receiving heart or heart–lung transplants. Survival rates for heart transplantation are improving and attention has therefore turned to psychosocial aspect of their functioning and to later quality of life (Mintzer, Stuber, Seacord et al., 2005). Investigations into the cognitive development and psychological well-being of children after heart transplantation were reviewed by Todaro, Femmell, Sears, Rodrigue, and Roche (2000), who concluded that in general there was no adverse impact of surgery on the neuropsychological function of children receiving transplantation. A later study suggested that for younger children rather than adolescents, transplantation may indeed have some adverse effects on cognitive development (Wray & RadleySmith, 2005). Moreover, a subset of studies suggest that those experiencing a more complex course of treatment, recurrent surgery or organ rejection may show more adverse effects of cognitive functioning. In addition, academic performance is adversely affected by recurrent hospitalization in these children. The pattern of findings also suggests that most children receiving transplants have good psychological adjustment 1 year after transplantation; however, there is a subgroup of about 25% of children who show emotional and behavioral difficulties. Todaro, Femmell, Sears et al. (2000) suggest that it is the stresses associated with transplantation, such as intense medical treatment and the reduced opportunities to socialize with peers, that result in negative affect, decreased social competence and behavioral problems in this minority of transplant recipients. These emotional and behavioral difficulties may adversely affect adherence and thereby influence the long-term health of children (for recommendations on how to increase SOMATIC DISEASE 937 9781405145497_4_057.qxd 29/03/2008 02:57 PM Page 937

medical compliance in these circumstances see Griffin & Elkin, 2001). Physical Symptoms Without Evidence of Somatic Etiology Complaints of physical symptoms unexplainable by known somatic etiology are common presentations in children and adolescents. These mostly involve stomach aches, headaches and joint pains, manifest in a range of severity, and are associated with functional impairments interfering with normal social interactions (Eminson, 2001a; Garralda, 1999; Taylor, Szatmari, Boyle, & Offord, 1996). They can cause the child to avoid school, attend repeated medical appointments and undergo painful investigations. The parents, or even the whole family, may become adapted to the notion that the child has an organic illness, and thus reinforce the child’s tendency to communicate by physical symptoms. The children are often shy and compliant outside the home and somatic complaints are used to express emotional distress, usually in a long-standing pattern, accompanied by family traits of anxiety, overprotectiveness and somatization. The underlying psychosocial issues, however, may be difficult to identify and treat. Depression and anxiety disorders are the most common associated psychiatric disorders (Egger, Costello, Erkanli, & Angold, 1999; Eminson, 2001a,b; Garralda, 1999). The etiology of somatizing disorders is complicated by the difficulty of distinguishing between factors relevant to the experience of physical symptoms and those contributing to illness behavior (Brown, Schrag, & Trimble, 2005). There is also a shortage of good-quality etiological studies. A variety of predisposing, precipitating and maintaining factors has been noted, although none is either necessary or sufficient on its own (Eminson, 2001a). A combination of vulnerability and trigger factors relates to issues unique to each child and family. The families are often characterized by a tendency to experience many somatic symptoms, limited verbal communication about emotional issues, including conflict, and parental history of somatoform illness or anxiety/depression. Conscientiousness, emotional lability or low self-esteem serve as predisposing factors in the children themselves. There may also be a history of abuse. Stressful life events, an episode of physical illness, peer group problems or academic pressures often precipitate the onset, and chronically stressful family situations or schoolrelated problems may contribute to symptom maintenance. Lately, the concept of somatization has been subjected to a major review in the light of psychoneuroimmunological research (Dantzer, 2005; Rief & Barsky, 2005; Thayer & Brosschot, 2005). It has been proposed that the brain cytokine system can become sensitized to repeated activation or exposure to environmental stressors in response to stimulation in the early stages of development. When sensitized, the system is less likely to turn off when the danger is over, and more likely to be triggered by extrinsic non-immune stimuli. This results in a sickness response along with its subjective, behavioral and metabolic components. Future research will no doubt either confirm or refute these propositions. Factitious Illness by Proxy The condition labeled Munchausen syndrome by proxy was formulated by Meadow (1977). Since that time there has been considerable controversy over the veracity of this concept, how frequently it occurs and its status within legislation and professional practice concerning child abuse. The current view is that this should be seen as a specific form of abnormal illness behavior (Pilowsky, 1997). This is shown by abnormalities in care-eliciting behaviors and relationships with health care professionals. By extension, this abnormal illness behavior can be generated by proxy via the manipulation of the health symptoms of a child. The term factitious illness by proxy has now been adopted. The current criteria (American Psychiatric Association, 2000) for identifying factitious disorder by proxy are as follows: 1 Intentional production or feigning of physical signs or symptoms in another person who is under the individual’s care. 2 The motivation for the perpetrator’s behavior is to assume the sick role by proxy. 3 External incentives for the behavior, such as economic gain, are absent. 4 The behavior is not better accounted for by another mental disorder. One of the most salient features of factitious illness by proxy is a history of abnormal illness behavior in the parent. For example, in a series of 37 families studied by Gray and Bentovim (1996), 18% of the mothers who had induced an illness in their child also had a history of factitious illness. In this sample, a total of 49% of the mothers presented with a psychiatric history. Very similar figures were obtained by Adshead and Bluglass (2005), with 21% showing a history of behaviors indicating personality disorder and 10% having a diagnosis of somatizing disorder. There was a history of psychiatric treatment in 52% of the mothers. These findings by Adshead and Bluglass (2005) came from a study making a detailed examination of the attachment representations of mothers with factitious illness by proxy using the Adult Attachment Interview. The sample had been referred for medicolegal assessment to a psychiatrist with a specialist practice in this area. They found a very high rate of insecure attachment representation (85%). They conclude that “mothers with factitious illness by proxy are more like a clinical group than not and therefore are likely to have unmet treatment needs, which may be relevant to future risk.” The reoccurrence of instances of unexplained deaths of young children led to the claim by Meadow that the parents may have murdered their children (Meadow, 1999). The evidence to support this conclusion and the flawed logic adopted have been extensively criticized. The principles governing expert witness testimony highlighted by this case have been outlined by Butler-Sloss and Hall (2002). An extensive collation of material on cases of factitious illness by proxy was produced by Sheridan (2003). The characteristics of 451 cases were described based on reports in journal papers. A substantial majority of the perpetrators CHAPTER 57 938 9781405145497_4_057.qxd 29/03/2008 02:57 PM Page 938

were mothers (just over 75%). Gender was not related to the risk victim status. The average age at diagnosis was 48 months but with a wide range extending up to 204 months. Just fewer than 10% had long-term or permanent disability with a further 6% with fatalities. Of the known siblings, a substantial proportion were either dead or had symptoms similar to the victims’. The most common conditions and symptoms that are created or faked by parents are apnea (27%), feeding difficulties (25%), diarrhea (20%), seizures (17%), cyanosis (12%), asthma (9%) and allergy (9%). The age of the child involved in factitious illness by proxy is an important consideration. The issues in older children have been reviewed by Awadallah, Vaughan, Franco et al. (2005) and include the collusion of the older child with the perpetrator and the fear of the consequences of disclosure. The difficulties in establishing parental involvement in factitious illness by proxy have led some pediatricians to advocate the use of covert video-recordings (Southall, Plunkett, Banks, Falkov, & Samuels, 1997). The dilemmas for clinicians have been clearly set out in a paper by Morley (1998) and its associated commentary. He concluded that, “Covert video surveillance is an infringement of the liberty of the parent and child and should be undertaken only as a last resort – when a group of people has assessed the case and no other way exists to diagnose the child’s problem.” Presentation of Psychiatric Disorders in the Form of Somatic Symptoms Dissociative Disorders Dissociative disorders, also known as conversion disorders, are characterized by a loss of function in any modality, suggesting a neurological or other physical condition, which is in fact not present (Goodyer, 1981; Leary, 2003). They appear from middle childhood onwards. An apparent loss of motor function is the most common presentation. Loss of sight, hearing, sensation and consciousness (as in a pseudoseizure), or partial loss (as in fugue state), have also been reported. These are not uncommon disorders although little is known about their true prevalence. This is mainly because the most transient disorders are not necessarily brought to medical attention or, if taken to an accident and emergency department or clinic, will often remit quickly with reassurance. Prolonged reactions usually lead to a referral to child and adolescent mental health services. However, a psychiatric referral does not necessarily exclude organic pathology, as demonstrated by a survey of over 10,000 patient records by Caplan (1970). Onethird of the 28 children given the diagnosis of “conversion hysteria” were subsequently found to have an organic illness. Precipitating factors include life stresses of all types, involving either the child directly, or the whole family. The family characteristics follow two broad patterns: chaotic social circumstances with multiple symptomatic family members, and those with high expectations for achievement and high anxiety about illness and loss (Grattan-Smith, Fairly, & Procopis, 1988). The children themselves are often described as unusually good and compliant, with anxiety or depression as a predisposing factor (Kozlowska, 2001). Taylor (1986) articulated four key elements of childhood conversion disorder: an intolerable predicament for which all solutions are blocked; a presence of an ally to promote sickness; an available model for sickness; and possession of the necessary social skills. The diagnosis involves reviewing existing medical investigations and conveying to the child and parents that there is no physical illness. Gaining their confidence to explore alternative explanations, such as feelings and life stresses, is a key task in establishing therapeutic alliance. Intervention begins with an acknowledgment that the young person has a real illness seriously disrupting their life. The presenting disability may be explained in terms of the body’s physical functions with a person’s feelings/emotions and social/interpersonal situation interacting with one another. Of the therapeutic approaches, both behavior therapy and graded physiotherapy programs have proved effective (Leary, 2003). Prognosis varies from good to poor. Favorable prognostic features include a recent onset and monosymptomatic manifestation, whereas conditions associated with a history of sexual abuse or pre-existing anxiety disorder or depression may become chronic. Epidemic Hysteria Apart from “hysterical conversion” disorders that occur in individual children, there is the rather different variety of “epidemic hysteria” (McEvedy, Griffith, & Hall, 1966; Moss & McEvedy, 1966). The topic was succinctly reviewed by Hersov (1997), who noted that, unlike the individual form, which is equally common in both sexes, epidemic hysteria much more frequently affects girls. It typically occurs among adolescents or pre-adolescents in a relatively closed community such as a boarding school or hospital. The phenomenon commonly involves a pattern of events with one person first developing “hysterical” attacks of falling or convulsions, overbreathing or some similar phenomenon; then another does, and soon the hysteria spreads to involve a large number of youngsters in the community. The individuals first to develop the hysterical attacks are usually found to have severe psychological disturbances, but this is less often the case with the later affected ones, who may be more dependent and show more neurotic traits than average, but are otherwise fairly ordinary youngsters. The reasons for the spread of disorder relate to the social milieu as much as to the personality features of the affected individuals. Usually, those who start the epidemic have a dominant and influential position within their peer group, and the epidemic starts at a time when group anxieties (e.g., sexual activities, worries about pregnancy, work stresses or the death of a classmate) create an emotional vulnerability. Stresses relating to the youngsters’ families of origin, such as parental divorce or death of a close relative, may also be behind the symptoms of the first affected individuals (Small & Nicholi, 1982). Outlining the main principles of managing mass hysteria, Hersov (1997) emphasized the need to first isolate the key initiating individuals. Following that, attention then needs SOMATIC DISEASE 939 9781405145497_4_057.qxd 29/03/2008 02:57 PM Page 939

to be paid to both the group tensions and emotions, and to the personal problems of the main instigators. Pseudoepilepsy Pseudoseizures or psychogenic seizures present as epileptic seizures but are not accompanied by abnormal patterns of electroencephalogram (EEG) activity. The prevalence rate is not known accurately but there are far fewer reports of psychogenic seizures in children than in adults. In a review of 883 patients assessed over a 6-year period in one pediatric epilepsy monitoring unit, 15% were classified as having paroxysmal non-epileptic events. Of these, the proportion with psychogenic seizures increased from 3% in the preschool years, to 43% and to 87% in the age ranges 5–12 and 12–18 years, respectively (Kotagal, Cota, Wyllie, & Wolgamuth, 2002). There is a concomitant decline with age in the proportion of these paroxysmal non-epileptic disorders that are physiological or organic in origin. Often, psychiatric disorders are found concomitant with pseudoepilepsy. For example, Papavasiliou, Vassilkai, Paraskevoulakos et al. (2004) reported depression, anxiety, obsessive-compulsive disorder and PTSD in a series of child and adolescent patients. In general, across all ages, depression is the psychiatric condition most commonly associated with pseudoepilepsy (Thompson, Osorio, & Hunter, 2005). There is an increased rate of epilepsy and of developmental delay in these children. However, those with pseudoepilepsy as well as epilepsy form only a small proportion of those with true epilepsy – Kotagal, Cota, Wyllie et al. (2002) estimate that they constitute just 1.5% of those with epilepsy. Families where Psychological Factors are Seen as Important for Child’s Somatic Symptoms When assessing a child with somatic symptoms, a greater than usual level of attention may be required to engage the young person and their parents with psychiatric services. A careful narrative approach to the history of the illness, its impact and management is often helpful (Eminson, 2001b). Understanding the family’s beliefs about the illness, the level of conviction that there is a physical cause, satisfaction with investigations already carried out and views about psychiatric referral is critical for successfully engaging the child and family (Garralda, 1999). It may also be helpful to canvass the family’s medical history more widely to establish whether other family members have had similar physical symptoms, whether a serious illness was the cause for them and whether the symptoms remained unexplained, as well as the outcome of the illness. A past failure of medical colleagues to find the cause of a family member’s complaints (sometimes with serious consequences) may undermine parental confidence in medical opinions. The individual assessment of the child or adolescent should proceed as normally, taking note of somatic symptoms, physical state and functional mobility, mental state and ability to relate and engage, as well as sleep, appetite, relationships, school attendance and ability to perform academic work. It is important also to enquire about the young person’s views about the cause of the illness, although these usually quite closely mirror parental views. Conclusions The child psychiatrist has a significant part to play in the care of children with a range of physical illness. There is also an increasing involvement of specialists from other disciplines. Pediatric psychology is maturing as a research field in its own right and as a specialism in clinical and health psychology. The application of both child psychiatry and psychology expertise is developing more effective and evidence-based methods of intervention in pediatric settings (Drotar & Lemanek, 2001). 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Because of the steadily increasing rates of HIV infection in women of childbearing age, HIV/AIDS has become a major worldwide threat to the health and psychosocial well-being of children and adolescents, particularly in low-resource countries with limited access to antiretroviral treatment (ART). Even in high-resource countries where the use of ART has dramatically reduced rates of morbidity and mortality, many children and adolescents continue to live either with their own or a parent’s HIV illness as a highly stigmatized, chronic or fatal transmittable illness with dramatic implications for their health, mental health and general well-being. This chapter provides a review of the mental health and neurodevelopmental issues associated with perinatal or maternal HIV infection in children and adolescents. The majority of research on mental health issues has come from the USA and European countries. Until recently, most research on children from low-resource regions such as Africa has focused on the economic, material and health care needs considered most critical to survival (Foster, 2002). Psychosocial factors have been neglected or seen as secondary to other life-threatening issues. However, there is an increasing awareness that ignoring these psychosocial factors may ultimately hinder children’s ability to obtain economic, material and basic health care resources and thus, their overall well-being (Foster, 2002). Epidemiological Overview of the HIV Epidemic as it Affects Children and Adolescents By the end of 2005, across the world, 40.3 million people were living with HIV/AIDS; 17.5 million were women and 2.3 million were children under the age of 15 years (UNAIDS, 2005a). Despite improved medical treatment options and ongoing prevention efforts, the death rate from AIDS continues to grow and new infections continue to emerge, particularly in women and children in low-resource countries. In 2005, 1.1 million women and 570,000 children died from AIDS (56% of the total deaths from AIDS) and 2.3 million women and 700,000 children under the age of 15 years were newly infected with HIV. In addition to the direct effects of HIV infection, millions of children worldwide are affected by HIV illness in their family members. Recent estimates of HIV-related orphaning in the USA were that 51,473 women have died from AIDS leaving 97,376 children motherless (Lee & Fleming, 2003). By the end of 2004, 15 million children across the globe, most significantly in sub-Saharan Africa, had lost one or both parents to AIDS (UNAIDS, 2005a). Over 90% of children with HIV/AIDS worldwide acquire the virus through mother–infant (vertical) transmission either during birth or through their mother’s breast milk (UNAIDS, 2005b). In high-resource countries such as the USA, widespread HIV counseling and testing, prophylaxis against opportunistic infections and the use of ART, including during pregnancy (Abrams, Weedon, Bertolli et al., 2001) have significantly reduced both the incidence of and mortality associated with HIV/AIDS. Overall, the estimated numbers of deaths among persons with AIDS in the USA decreased by 8% from 2000 through 2004. In the USA, and in other developed countries, perinatal transmission of HIV infection has been substantially reduced by the use of ART by women during pregnancy and birth. For example, in the USA there were 1750 HIV-infected infants born each year during the early to mid-1990s; in 2004, there were just 47 cases (CDC, 2006). Unfortunately, standard medical treatments utilized in the developed world for the treatment of HIV infection and the prevention of vertical transmission have only recently begun to reach much of the developing world, where the vast majority of new HIV infections occur. In developing countries, economic conditions and health infrastructure inadequacies have limited access to ART, including women’s access to ART during pregnancy. This is a particular problem in sub-Saharan Africa, where over 75% of the world’s HIV/AIDS cases exist, and HIV rates in pregnant women in antenatal clinics have been estimated to be as high as 40% (UNAIDS, 2005b). In the absence of ART treatment, vertical transmission rates are estimated at 25% (NIAID, 2004). Whereas pharmacological advances in the treatment of HIV may reduce overall mortality, there is still a risk for poor health and mental health outcomes. Women and children infected and affected by HIV/AIDS in the USA are disproportionately ethnic minorities living in impoverished urban communities (CDC, 2004) who have been found to receive fewer health care services, including treatment with ART, and to have a greater risk of death (CDC, 2004; Cunningham, Hays, Duan 945 Psychiatric Aspects of HIV/AIDS 58 Jennifer F. Havens and Claude Ann Mellins 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 945 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

et al., 2005; Shapiro, Morton, McCaffrey et al., 1999). Furthermore, although heterosexual contact is now the primary risk factor for HIV infection in women with AIDS in the USA (43%), 37% of women acquire AIDS through intravenous drug use (IDU; CDC, 2004). In the USA, 51% of children under 13 years with AIDS were born to women whose risk factor for HIV infection was IDU by themselves or their partner (CDC, 2004). As mortality decreases in HIV-infected adults, many continue or reinitiate substance use (Rotheram-Borus, Lee, Leonard et al., 2003) and thus their children are not only coping with parental HIV, but also the detrimental effects of parental substance abuse (see chapter 36). In low-resource areas, such as sub-Saharan Africa, the huge numbers of children infected and affected by HIV/AIDS represent a major threat to the stability of the region. South Africa, which has one of the highest rates of HIV-infection in the world (UNAIDS, 2005a), also has one of the highest poverty rates; 60% of its children live in extreme poverty (Giese & Hussey, 2002). Many Black children in South African cities live in informal settlements, exposed to violence, environmental degradation, racism and poor school districts; many also grow up in single-parent homes (Barbarin, Richter, & deWet, 2001; Richter, 2003), and as a consequence of poverty are subject to material scarcity and disruptions in caregiving (Werner & Smith, 2001; Williamson, 2006). Because of the marked discrepancies in access to health care, the medical trajectories of the HIV/AIDS epidemics now differ significantly between the developed and the developing world. However, there remain striking commonalities in the psychosocial vulnerabilities of HIV-infected women and children across the globe, with poverty, minority status, family reconfiguration and exposure to violence and substance abuse complicating children’s and families’ adjustment to HIV/ AIDS-related illness. Perinatal HIV Infection in Children and Adolescents Medical Treatment Issues Prior to the advent of ART, the rate of disease progression among children with HIV varied considerably, but was typically more rapid in children than in adults, regardless of the mode of infection (Abrams & Kuhn, 2003). In the first decade of the HIV epidemic, perinatally HIV-infected children had a considerably shortened life expectancy. In 1995 in the USA, 75–90% of infected children were expected to have symptoms by 1 year of age; 25–30% would have clinical AIDS. Two relatively distinct courses were described: a rapidly progressive course occurring in 20% of children and a more common, slowly progressive course. The death rate was greatest during the first year of life (more than 15%) but slowed after 2 years, with many children remaining stable throughout their first 10 years of life (Abrams & Kuhn, 2003). In the USA, the introduction of protease inhibitors in 1996, and the development of combination ART regimens with superior efficacy in viral suppression, provided substantial clinical benefits to HIV-infected children (Kline, 2005). These advances in ART led to substantial improvements in neurodevelopment, growth and immunological and virological status. Combination therapy is now recommended for all infants, children and adolescents who are being treated with antiretroviral agents (HIV/ATIS, 1999). By 1999, the median lifespan for perinatally HIV-infected children in the USA was 8.6–13 years (American Academy of Pediatrics, 1999). By 2005, 46% of pediatric HIV/AIDS cases in New York City, one of the epicenters of the US epidemic, were 13–19 years of age and 9% were 20 years and older (NYCDOH, 2005). Thus, in high-resource countries such as the USA in which new cases of pediatric HIV are increasingly rare, pediatric HIV infection is evolving into an adolescent disease. In spite of enormous successes in decreasing morbidity and mortality in the USA, ART is not uniformly beneficial. Recent US studies indicate that standard combination ART regimens are effective in only 50% of children, most likely because of multidrug resistance associated with prior exposure to less than optimal HIV treatment, and poor adherence (Yogev, 2005). However, recent advances in new ART treatments have the potential to ameliorate the effects of drug resistance. Unfortunately, the toxicity of long-term ART use resulting in significant side effects (e.g., insulin resistance, cardiomyopathy, lipodystrophy) may still influence adherence. It is possible that in low-resource countries, where children and adolescents have had limited exposure to prior HIV treatments associated with drug resistance, recent trends in increasing availability of superior ART regimens (Domek, 2006) have the potential to improve outcomes significantly for children. Neurodevelopmental Sequelae of HIV Infection From the beginning of the epidemic, there have been consistent findings of significant neurological, developmental, cognitive and language deficits in HIV-infected children (Belman, Muenz, Marcus et al., 1996; Brouwers, Belman, & Epstein, 1991; Coplan, Contello, Cunningham et al., 1998; Drotar, Olness, Wiznitzer et al., 1999; Epstein, Sharer, & Goudsmit, 1988; Mellins, Levenson, Zawadzki, Kairam, & Weston, 1994). In general, the severity of neurological and neuropsychological compromise increases with the severity of HIVrelated illness; specifically higher viral loads and the most severe non-neurological health-related symptoms (Jeremy, Kim, Nozyce et al., 2005; Pulsifer & Aylward, 2000). HIV-Associated Encephalopathy Prior to the advent of ART, two relatively distinct neurodevelopmental patterns were described in largely untreated HIV-infected infants and children: progressive encephalopathy and static encephalopathy (Brouwers, Belman, & Epstein, 1991; Epstein, Sharer, & Goudsmit, 1988). Static encephalopathy, characterized by non-progressive deficits in cognitive, motor and/or language function, is not considered to be directly attributable to HIV and is most likely associated with non-HIV risk factors such as prenatal drug exposure, preCHAPTER 58 946 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 946

maturity, low birth weight and genetic risk factors (Epstein, Sharer, & Goudsmit, 1988; Mellins, Levenson, Zawadzki et al., 1994). Progressive encephalopathy, corresponding with the AIDS dementia complex in adults, is characterized by the loss of developmental mile-stones in young children, declining IQ scores and increasing difficulties with language, attention, concentration and memory in older children. Encephalopathic children also manifest apathy, decreased social behavior and symptoms of depression and irritability compared to nonencephalopathic children (Moss, Brouwers, Wolters et al., 1994; Moss, Wolters, Brouwers et al., 1996). This neurodevelopmental pattern is considered to be a direct effect of HIV on the central nervous system (CNS) and has been associated with a poor overall health prognosis. Before the development of ART, HIV-related encephalopathy was a common sequela, reported in 35–50% of children with pediatric AIDS (Cooper, Hanson, Diaz et al., 1998; Lobato, Caldwell, Ng, & Oxtoby, 1995; Rigardetto, Vigliano, Boffi et al., 1999). ART and Neurodevelopment Early reports indicated that ART had the potential to ameliorate the development and progression of HIV-related CNS compromise. Zidovudine treatment alone was shown to be associated with improvements in cognitive and neuropsychological functioning (Brady, McGrath, Brouwers et al., 1996; Brouwers, Moss, Wolters et al., 1990; McKinney, Maha, Connor et al., 1991; Pizzo, Eddy, Fallon et al., 1988). Current treatments, which combine several antiviral agents to achieve near total viral suppression, have the potential to reduce the prevalence and severity of CNS disease in that they prevent HIV progression. Since the advent of ART, the rate of HIV encephalopathy has declined markedly. In a study of neurobehavioral outcomes in 126 children perinatally infected with HIV, the rate of progressive HIV encephalopathy was 1.6% (Chiriboga, Fleishman, Champion, Gaye-Robinson, & Abrams, 2005). Progressive HIV encephalopathy, which historically was considered a poor prognostic sign, was found to respond to ART. Yet, in spite of better prognosis, those children who experienced progressive encephalopathy showed higher rates of residual neurological, cognitive and academic difficulties (Chiriboga, Fleishman, Champion et al., 2005). In a recent study of more subtle neuropsychological outcomes (e.g., vocabulary), treatment with ART, consisting of a protease inhibitor regimen for 48 weeks, did not significantly affect performance, even when the treatment reduced HIV RNA viral load significantly (Jeremy, Kim, Nozyce et al., 2005). Differential Diagnosis of Neuropsychological Deficits in HIV-Infected Children and Adolescents More recent studies in the USA have evaluated the neuropsychological functioning of larger samples of older HIVinfected children, most of whom have had some experience with ART (Nozyce, Lee, Wiznia et al., 2006; Smith, Malee, Leighty et al., 2006). These studies generally report cognitive delays and deficits when comparing HIV-infected children to population norms. However, in US studies utilizing appropriate comparison groups (such as perinatally HIV-exposed but uninfected children), investigators have failed to find differences between the HIV-infected and comparison groups (Fishkin, Armstrong, Routh et al., 2000). In a sample of HIV-infected, long-term surviving and ART-naïve Ugandan children, HIVinfected children did not differ significantly in neurological and cognitive assessments when compared with gendermatched HIV-exposed but uninfected and HIV-negative children (Bagenda, Nassali, Kalyesubula et al., 2006). However, when studies consider severity of illness as a variable affecting neuropsychological outcomes, progression to AIDS has been consistently associated with poorer outcomes (Nozyce, Lee, Wiznia et al., 2006; Smith, Malee, Leighty et al., 2006). In conclusion, because of the high-risk backgrounds of HIVexposed children, both in the USA and internationally, the effects of HIV infection on cognitive functioning, in the absence of disease progression, are often difficult to disentangle from other background characteristics that are also know to affect neuropsychological outcomes. Emotional and Behavioral Disorder in HIV-Infected Children and Adolescents Rates of Mental Health Problems and HIV Causality In general, high rates of emotional and behavioral disorders have been reported in HIV-infected children and adolescents (Havens, Whitaker, Feldman, & Ehrhardt, 1994; Mellins, Brackis-Cott, Abrams, & Dolezal, 2006a; Moss, Bose, Wolters, & Brouwers, 1998; Nozyce, Lee, Wiznia et al., 2006; Papola, Alvarez, & Cohen, 1994), although determining whether HIV infection has a causal effect on children’s emotional and behavioral functioning is difficult. There have been very few studies utilizing appropriate comparison groups and no large-scale epidemiological studies are available. Havens, Whitaker, Feldman et al. (1994) found that 21% of a small sample of HIV-infected children met criteria for attention deficit/hyperactivity disorder (ADHD). However, these rates were no different from those in a matched control group of children from similar backgrounds (children living in foster care who had been born to women who had used drugs during pregnancy). Similarly, Mellins, Kang, Leu, Havens, and Chesney (2003) in one of the largest controlled prospective longitudinal studies following perinatally HIVexposed children (96 HIV-infected children and 211 seroreverters) also found high rates of emotional and behavioral problems, but failed to find an association between either HIV status or prenatal drug exposure and poor emotional and behavioral outcomes. The strongest correlates of increased behavioral symptoms were demographic characteristics (gender, ethnicity, maternal education). Given the results of the above studies, caution is warranted in attributing HIV causality to the high rates of behavioral problems found in studies that do not include appropriate HIV/AIDS 947 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 947

control groups (Nozyce, Lee, Wiznia et al., 2006) given the association of HIV with other risk factors. Features associated with prenatal drug exposure and parental substance abuse, such as prematurity, low birth weight, exposure to trauma, abuse and neglect, and parental psychopathology may actually be more potent mediators of mental health problems in HIVinfected children than HIV itself (Campbell, 1997; Havens, Whitaker, Feldman et al., 1994; Mellins, Levenson, Zawadzki et al., 1994; Merikangas, Dierker, & Szatmari, 1998; Singer, Farkas, & Kliegman, 1992; Walsh, Macmillan, & Jamieson, 2003; Whitaker, Orzol, & Kahn, 2006; Wilens, Hahesy, Biederman et al., 2005). Psychotherapeutic Issues in Helping Perinatally Infected Children Cope with HIV Regardless of causality, HIV-infected children are at risk for neurodevelopmental and mental health problems which need to be considered by mental health providers. These factors tend to differentiate HIV disease from other chronic illness of childhood and adolescence and frequently complicate young people’s adjustment to HIV infection. Communication About Health HIV disclosure to the perinatally infected child remains one of the most clinically challenging issues for families and providers, in part because of the tremendous stigma that still exists. In general, age and developmental level dictate the child’s capacity to understand the meaning of their illness. Across illnesses, preschoolers and young school-age children generally cannot grasp the concept of chronic illness and understand episodes of HIV-related illness as discrete and unconnected events (Bibace & Walsh, 1980; Wiener, Mellins, Marhefka, & Battles, 2007). Because of the stigma and young children’s inability to contain information discretely, they are usually not informed about their HIV infection. Most providers agree that as children age, communication about their health problems becomes more important, both to secure their participation in health regimes and to facilitate adjustment to living with HIV. Often older school-age children who are not directly informed of their diagnosis will deduce it from clues in the medical care environment or elsewhere. A lack of open communication in these cases may isolate the child from adult help with issues related to HIV. These issues include coping with secrecy, stigma and potential peer rejection, coping with chronic illness, and anxiety about the future (Wiener, Mellins, Marhefka et al., 2007). Studies with HIV-infected children indicate that parents or other family caregivers often resist communication with the HIV-positive child about his or her health in an effort to protect the child from emotional distress (Mellins, Brackis-Cott, Dolezal et al., 2002). Other reasons include the adult’s fear of experiencing more pain about the child’s diagnosis; biological parents’ fears about disclosing their own HIV infection through disclosure of the child’s infection and parental guilt about having transmitted the virus to the child and their own HIV risk behaviors (e.g., sexual behavior, drug use) and concerns that the child will disclose family secrets about HIV in undesirable ways (Wiener, Mellins, Marhefka et al., 2007). In 1999, the American Academy of Pediatrics published guidelines stating that all adolescents should know their HIV status and that disclosure should be considered for schoolage children (American Academy of Pediatrics, 1999). Clinical reports have indicated positive outcomes associated with disclosure including the promotion of trust, improved adherence to treatment, enhanced access to support, open family communication and better long-term health outcomes (Wiener, Mellins, Marhefka et al., 2007). However, disclosure of HIV to children still remains a difficult and controversial issue for families and providers, and relatively few research studies have been conducted to evaluate the following: 1 Most appropriate timing and determinants of disclosure; 2 Psychosocial effects of HIV disclosure; 3 Impact of disclosure on adherence and sexual behavior; and 4 Most effective strategies for full disclosure. Lessons learned from pediatric oncology are applied to HIV disclosure, even though the population of children affected by HIV differs dramatically, in terms of socioeconomic and cultural variation, and the incomparable social stigma that surrounds HIV/AIDS. The few studies that have actually been conducted were recently reviewed (Wiener, Mellins, Marhefka et al., 2007) with mixed findings: some showed psychological benefits of disclosure, others risks and still others showed no mental health differences between youth who knew and those who did not know their diagnosis. Whereas for adults the specific diagnosis of HIV is often a highly charged, overwhelming element in their efforts to communicate to the child about health issues, it is in fact only a single component, which may in part explain differences in study findings. The child may be more concerned about medications, medical appointments and procedures associated with a chronic health condition, or with impingement on functioning. Establishment of effective communication with the child on the broad range of health-related issues is of great importance. What is most critical to remember is that disclosure is a process and that process must reflect a child’s developmental understanding of illness and death. It is not a discrete event that can be forgotten once it occurs (Lipson, 1994). Children’s needs for information and emotional response to the information change over time, as has been shown in the pediatric oncology literature (Spinetta, 1980). Adherence to Medical Regimens HIV-infected children need to adhere to complicated medication regimens, attend numerous medical appointments and undergo frequent diagnostic procedures. Optimism about the success of treatment has been tempered by the significant challenges to maintaining long-term adherence to these multidrug ART regimens (Chesney, 2003; Mellins, Brackis-Cott, Dolezal, & Abrams, 2004). A number of studies of pediatric adherence to ART indicate that adherence ranges from 57% CHAPTER 58 948 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 948

to 81% (Mellins, Brackis-Cott, Dolezal et al., 2004), comparable to results from adult HIV studies (Chesney, 2003). Although 80% adherence may be sufficient for some health conditions, it is well below what is necessary for successful HIV treatment. Even brief episodes of missed medication can permanently undermine efforts to suppress HIV RNA viral load (Macilwain, 1997). In studies of other chronic childhood diseases (e.g., asthma, cancer, diabetes), a combination of child, caregiver and provider psychosocial characteristics has been associated with adherence (see chapters 57 and 70). For HIV-infected children, the possibility of stigma and discrimination may complicate adherence to medications that must be taken throughout the day, often when the child is in school (Armistad, Forehand, Steele, & Kotchick, 1998). Given that HIV-infected children are not always told their diagnosis, they may not cooperate with treatment, particularly given that HIV medications often have unpleasant tastes and significant medical side effects. Variables associated with increased non-adherence include older child age, female gender, worse parent–child communication, worse child and caregiver cognitive or educational function, stressful life events, youth mental health problems, parent–child relationship factors including less supervision and monitoring and less parent–child involvement, caregiver HIV status, and youth engagement in other risk behaviors (e.g., sexual intercourse; Mellins, Brackis-Cott, Dolezal et al., 2004; Mellins, Brackis-Cott, Dolezal et al., 2006b; Williams, Storm, & Montepiedra, 2006). These data suggest that efforts to improve children’s adherence to ART would benefit from behavioral and mental health interventions addressing psychosocial and familial issues, although intervention studies are only now under way. Based on clinical experience, many families will need support administering the complex regimen of medication for the child, and in managing the child’s potential opposition to taking medication. Behavioral treatment may be helpful to families (see chapter 62). Finally, caregivers may give children too much responsibility for taking their medications before they are ready to manage the regimens effectively. Working with families to develop realistic expectations of older children’s ability to manage their medication independently is important. Promotion of Optimal Development and Education The mental health issues for infected children change over the course of the disease. There are an increasing number of HIV-infected children who remain relatively symptom free for long periods of time. They may not know their diagnosis and their lives may be relatively unaffected by illness. However, they may be very stressed by the illness of a parent, substance abuse in the family, disrupted placements and ruptured attachments, or other problems faced by families at highest risk for HIV. Interventions for these problems and attention to promotion of the child’s optimal development may be of more relevance in his or her mental health care than a narrow focus on HIV (Rosen, Mellins, Ryan, & Havens, 1997; Ryan, Havens, & Mellins, 1997). A part of optimal development is the capacity for adequate school functioning. Often, the various systems that should serve the HIV-infected child – the family, child welfare agencies, foster agencies, public school and health care institutions – fail to ensure that the child’s education needs are met. HIVinfected children are at high risk for school-related problems given neuropsychological deficits, frequent absence because of health problems and multiple medical appointments. Thus, HIVinfected children require regular psychoeducational evaluations to monitor possible deterioration. Teachers may not know about a child’s HIV infection, given rules of confidentiality. They may misinterpret frequent absence and potential lack of motivation as reflecting a lack of interest or commitment to school. HIV-infected children may require special education resources. As their health deteriorates, home-based education may become necessary. It is important to the general well-being of these children that as normal an education experience as possible be maintained. Issues in Adolescence In the USA and other countries with widespread access to ART, perinatal HIV infection has become an adolescent epidemic. Adolescence is a developmental stage that poses many challenges for youth without chronic health conditions. Perinatally infected adolescents must confront the social ramifications of having a chronic and stigmatizing disease, including disclosure of illness and ostracism and possible transmission of the virus to others. Many perinatally infected youth have delays in physical development, including the onset of puberty. These delays, as well as threats to body self-image posed by having a chronic health condition, present another risk factor for poor outcomes, given that adolescence is a time of increasing interest in body image, and several studies link body image with mental health and sexual risk outcomes in both boys and girls (Benjet & Hernandez-Guzman, 2002; Wingood, Diclemente, Harrington, & Davies, 2002). Because ART did not become routinely available to children in the USA until 1998, many perinatally infected adolescents were exposed to years of less than optimal treatment and thus, active HIV disease (De Martino, Tovo, Balducci et al., 2000; Gortmaker, Hughes, Cervia et al., 2001), which in turn may have led to CNS insult and neurodevelopmental and cognitive deficits. Furthermore, adolescence is a time when certain psychiatric disorders may emerge. One study reported that over 50% of 9- to 16-year-old perinatally infected youth from a New York City medical clinic sample met criteria for a psychiatric disorder (Mellins, Brackis-Cott, Abrams et al., 2006a). As congenitally infected children move through adolescence and young adulthood and become sexually active, they require significant support in managing the complex issues of integrating healthy sexual development with their HIV infection. Because many of these youth were not expected to live until adolescence, their caregivers and providers have not necessarily engaged them in conversations about sexual health and sexual risk behavior. Open and honest communication around HIV/AIDS 949 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 949

patterns of sexual behavior, disclosure to sexual partners and strategies for the prevention of the spread of HIV are essential. Secondary prevention among HIV-infected youth must be addressed, so that these youth do not re-expose themselves or infect others. Other notable issues for HIV-infected adolescents include high rates of non-adherence (Mellins, Brackis-Cott, Dolezal et al., 2006b). Non-adherence has not only individual health consequences (e.g., development of drug-resistant strains of HIV; poor immune function), but also public health consequences given the possibility of transmission of drug-resistant strains of the virus to potential partners. Again, this suggests that there is a need for interventions to promote healthy development and reduce risk in this population. Reliance on parents or other adult family members for health care may lead to regression and difficulty seeing oneself as a young adult. One major goal is to help an effective transition into independent adulthood. Helping youth develop strategies to deal with their illness, the stressful life events that they experience and will encounter in the future, develop a support system, and navigate adolescence are critical tasks for therapeutic interventions. Unfortunately, to date there have been very few interventions aimed at promoting optimum development and reducing risk behavior in the transition from childhood to adulthood. In one of the few examples, CHAMP+ (McKay, Block, Mellins et al., 2006), multiple family groups are brought together to promote family communication, increase parental supervision and support of children, reduce youth sexual risk behavior and promote adherence and general well-being. It is clear from the experience of the investigators that interventions are needed to help parents and children communicate about adolescent issues, negotiate changing roles and youth autonomy in appropriate ways, and consider reduction of risk behaviors. Psychopharmacological Management of HIV-Infected Children and Adolescents Psychopharmacological management of psychiatric disorder, delirium and dementia in HIV-infected children is often a necessary component of adequate treatment. However, it is complicated by drug–drug interactions with ART medications used to treat HIV disease (an issue in all HIV-infected children undergoing such treatment) and potential CNS impairment secondary to HIV infection (a particular issue in those children with advanced HIV disease). Psychotropic medications in pediatric HIV should be initiated at doses lower than standard treatment and titration upward should be slow and carefully monitored. When evaluating children with behavioral syndromes who are treated with antimicrobial, antifungal and/or antiviral agents, potential neuropsychiatric side effects must be included in the differential diagnosis. When planning pharmacological treatment of HIV-infected children on antiretroviral medication, potential drug interactions must be taken into consideration (Sahai, 1996). Of particular importance in drug interactions is the family of cytochrome P450 isoenzymes, which are responsible for the metabolism of many psychotropic medications and antiretrovirals, especially the protease inhibitors. Other HIV-related medications, including antimicrobial and antifungal medications used in treatment and prophylaxis, also interact with cytochrome P450 isoenzymes. It is important when initiating treatment with psychoactive medications to review the metabolism of the medication(s) with the entire treatment regimen to identify interactions and contraindications. As little is known on treating HIV-infected children with psychotropic medication, treatment should proceed cautiously and with frequent monitoring (Fauci, Bartlett, & Goosby, 1999; Heylen & Miller, 1996a,b; Oleske & Scott, 1999). In a case series, Havens and McCaskill (1999) described the psychostimulant treatment of 12 HIV-infected children and adolescents, eight with ADHD and four with HIV-related dementia. Two-thirds of the children tolerated psychostimulants with good efficacy as measured by the Efficacy Index of the Clinical Global Impressions. The maintenance dosage of methylphenidate was in the range 0.2–1.2 mg·kg−1 , and the one child on dextroamphetamine required 0.6 mg·kg−1 . Four of the 12 children treated (three out of the ADHD sample) experienced adverse side effects precluding their continuation of methylphenidate. While the neuropsychiatric adverse effects argue for caution in the psychostimulant treatment of this population, such treatment should not be withheld when clinically indicated. Two out of the three children who could not tolerate methylphenidate were managed with clonidine. Therapeutic Support for the Child and Family with End-stage Disease There has been limited research on this topic in HIV-infected children. However, much of the work conducted on other terminal illnesses such as cancer is most likely applicable (Hurwitz, Duncan, & Wolfe, 2004). With disease progression, children must confront the physical and mental decline associated with AIDS. As they approach late-stage illness, they and their families must confront the terminal nature of the disease. Often, families are overwhelmed at this stage and have difficulty communicating with the child about issues related to prognosis and death. Sensitive mental health intervention by clinicians with an ongoing relationship with the child and their family can provide a place for the child to express the inevitable anxieties and fears about separation from family members and dying, and to help the child, if old enough, to communicate their wishes about medical treatment. Special attention must be paid to issues of pain management at this stage, particularly for young children with limited ability to communicate information to health care providers effectively (Havens, Ryan, & Mellins, 1999). As children approach the end of life, they may experience confusion and great anxiety. Parents or other caregivers and perhaps even health care providers may find communicating with the child about the approach of death so difficult and overwhelming that they avoid it. Dying children need a venue in which death can be discussed with the opportunity to express CHAPTER 58 950 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 950

their thoughts and fears, and receive reassurance. For many children, separation from family is the most worrisome aspect of death. A therapist may be able to draw on elements in the family’s spiritual or religious belief system to sustain hope of continuity of attachment between the deceased and surviving family members (Havens, Ryan, & Mellins, 1999; Ryan, Havens, & Mellins, 1997). Mental Health Issues in Children Living with Parental HIV Illness There is a growing US literature suggesting that uninfected children and adolescents of HIV-infected parents show higher rates of depression, anxiety, learning problems, criminal activity, poor school functioning, diminished family and social support, risky sexual behavior and substance use than youth with unaffected parents (Esposito, Musetti, Musetti et al., 1999; Forehand, Jones, Kotchick et al., 2002; Rotheram-Borus, Leonard, Lightfoot et al., 2002; Rotheram-Borus, Lee, Leonard et al., 2003). The mental health issues associated with HIV illness in families evolve over the dynamic course of HIV illness and vary depending on the stage of their parents’ illness (Havens, Mellins, & Pilowski, 1996). The stages begin with diagnosis of HIV infection and include asymptomatic illness, illness progression, late-stage illness, death and reconfiguration of the family with the children in new care arrangements. With the development of effective ART, at least in the developed world, the inevitability of the linear progression through these stages has been reduced. Children exhibit a variety of responses to parental HIV diagnosis, illness or loss at any stage in this process. These responses may be characterized as one or more of the following: 1 Normative responses requiring supportive counseling and/or increased access to existing social supports; 2 Responses complicated by developmental histories of poor or disrupted attachment and/or trauma (particularly common in children also affected by parental drug addiction), indicating a need for individual or family psychotherapy; and 3 Exacerbations of pre-existing psychiatric disorder or precipitations of new-onset disorder, in which syndrome-specific treatment must be among the interventions (Havens, Ryan, & Mellins, 1999; Ryan, Havens, & Mellins, 1997). Issues in differential diagnosis within the stage model of HIV illness are reviewed below. Diagnosis and Disclosure of HIV Infected parents frequently withhold information about their HIV diagnosis from their children. The majority do not tell children prior to early or even middle adolescence (Lee & Rotheram-Borus, 2002; Mellins, Brackis-Cott, Dolezal et al., 2002). Parents are often concerned about the child’s negative emotional response, anger and inability to maintain the secret (Pilowski, Sohler, & Susser, 2000; Vallerand, Hough, Pittiglio, & Marvicsin, 2005). Even in the absence of direct communication, many children and teenagers develop their own suspicions about the parent’s health problems from clues such as medications, symptoms or multiple medical appointments. Children experience a great deal of distress suspecting that a parent is struggling with HIV-related illness, yet because they are not “supposed to know” they remain unable to reach out for adult support and reassurance. Research on disclosure of parental HIV has resulted in mixed findings, with some studies suggesting that children do worse after learning about parental HIV and other studies showing no difference (Mellins, Brackis-Cott, Dolezal, & MeyerBahlburg, 2005; Murphy, Marelich, & Hoffman, 2002; Vallerand, Hough, Pittiglio et al., 2005). In part this may be because of variations in the ages of the children, the outcomes being studied, the length of time since disclosure occurred and the availability of support for the child and family. Also, as noted above, disclosure is often misunderstood as a discrete event that can be accomplished as a single communication. It is more appropriately handled as an ongoing process, with new information provided with any change in parental health status. Parents and other adult caregivers of the HIV-affected child should be counseled about the importance of developmentally appropriate communication about the parent’s health. The family’s established style of communication about emotionally charged information may not be sufficiently flexible to allow for complete disclosure, but may be able to tolerate communication of part of the truth without specifying the precise diagnosis (“Mommy has an infection in her blood. She’s taking medicine to keep her healthy.”). Adults should be counseled to provide children with realistic reassurance about the parent’s health, and about their own future care and security. HIV-negative children may worry that they themselves are infected because their parent is, and should be assured that they and their siblings are uninfected. In cases where there is uncertainty about a child’s serostatus or where additional reassurance is indicated, HIV testing can be very helpful. Progression of HIV Illness When parental HIV disease progresses, children are confronted with deterioration in the parent’s ability to function as well as separations resulting from hospitalizations. Use of ART means that parental death is no longer inevitable and parents often experience episodes of severe HIV-related illness with subsequent recovery with changes in their medication regimen. The importance of communication with children about parental illness increases as HIV disease progresses. Responding to a parent’s physical, cognitive or functional decline without accurate information about illness and prognosis is very difficult for a child. The normal sadness, anger and anxiety experienced by children living with an ill parent can be exacerbated by the need to manage these feeling without support from adults who are unable to allow open communication about their illness. Given the high-risk backgrounds of many HIV-affected families, children’s responses to the parent’s illness may also be complicated by underlying psychiatric disorder, developmental HIV/AIDS 951 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 951

difficulties in the child’s attachment to the parent, and difficulties in the family environment. When working with families affected by both drug use and HIV, it is important to carefully assess children presenting with symptoms in response to parental illness; the attribution of symptomatology to HIVrelated stressors alone is often clinically inappropriate (Havens, Mellins, & Pilowski, 1996). Permanency Planning With ongoing progression of HIV disease in the parent, caregivers may require counseling about planning for the placement of children following parental death. Communication about HIV illness and permanency planning tend to be closely intertwined, with difficulties in one area being reflected in the other. Family-based permanency planning that actively involves the children, particularly teenagers, is more likely to have a successful outcome than that which excludes the affected young people. Effective permanency planning can be undermined by active substance abuse and untreated psychiatric disorder in family members, as well as by family dynamics related to substance abuse. Bereavement and Family Reconfiguration Loss of a parent can lead to adverse consequences (see chapters 26 and 27). A positive relationship between the parents prior to the death and a strong surviving parent to keep the family intact have been identified as protective against elevated risk of mental health problems (Harris, Brown, & Bifulco, 1986; Kranzler, Shaffer, Wasserman, & Davies, 1990). Among the predictors of complicated bereavement are prior child emotional difficulties, emotional lability and poor impulse control (Kranzler, Shaffer, Wasserman et al., 1990). Many of the factors associated with complicated bereavement in childhood are present in HIV-affected children and adolescents. Furthermore, the effect of parental death in this population is exacerbated by the stigma associated with losing a parent to AIDS, which can lead to secrecy and social isolation, limiting the extent to which children and their families are able to access support (Draimin, Hudis, Segura, & Shire, 1999). Grieving HIV-affected children and adolescents most commonly move into reconfigured families with extended family members also mourning the loss of the loved one. In countries with well-developed health services, the social and concrete service supports available to the families by virtue of the parent’s AIDS diagnosis generally diminish or disappear following the parent’s death. Generally, children and adolescents orphaned by AIDS are moving from one situation of poverty to another, with the responsibility for the care of these children falling on financially limited and often overwhelmed extended family members. In those cases where children and adolescents move into non-relative foster care, they must make the difficult adaptation to new family members and often very different family lifestyles. Education for the grieving child and counseling for his or her adult caregivers are very useful in many families. It is helpful to distinguish the usual course of mourning of adults (a sustained period of dysphoria, followed by a gradual return to normal mood) from that more typical of children, especially pre-adolescents (immediate periods of dysphoria punctuated by apparently normal play or socializing, with periods of grieving throughout the developmental trajectory). When a child’s deceased parent has been absent or otherwise deficient in their role with the child, adult caregivers may be puzzled by the child’s mourning over the loss: they need an explanation that the loss of inadequate parenting may in fact complicate rather than minimize the child’s grieving process. Issues of Bereavement in Low-Resource Countries Internationally, one of the most significant effects of the HIV epidemic is the staggering number of children with very few resources who are or will become orphaned because of HIV. Multiple losses, stigma and chronic social vulnerability hinder a therapeutic bereavement process among AIDS orphans. Also, because of high death rates in AIDS-affected African communities, orphans experience multiple losses (Foster, 2002). Studies from African countries have found that compared with non-orphans, AIDS orphans (defined as children who have lost at least one parent to AIDS) had more unmet basic living needs, less access to school and more psychological problems, including negative mood and pessimism (Atwine, Cantor-Grae, & Bajunirwe, 2005; Makame, Ani, & Grantham-McGregor, 2002; Sendengo & Nambi, 1997; UNAIDS, 2004). Given the devastating effects of family and community destruction resulting from years of poverty, racism, family relocation and migration, violence and famine, many African children orphaned by AIDS are at great risk for poor mental health and health outcomes given limited resources, stigma, exploitation by new caregivers and a dearth of appropriate caregivers. Conclusions Over 25 years into the HIV epidemic, HIV/AIDS continues to affect millions of children and adolescents worldwide. In the developed world, medical advances in both ART and prevention of vertical transmission have decreased morbidity and mortality in infected children and in their infected family members. In the developing world, the cost of ART and health infrastucture inadequacies have made widespread implementation of treatment advances difficult, leaving millions of children and adolescents without parents and at risk for their own HIV infection and illness. Although clinical trials are underway, there is no currently available vaccine against HIV (D’Souza, Cairnes, & Plaeger, 2000). Continued targeted prevention efforts and more equitable distribution of health care resources are essential elements in the global fight against HIV/AIDS. In the meantime, effective therapeutic interventions to address the mental health consequences of individual and familial HIV disease have an essential part to play in maximizing the outcome for children and adolescents affected by HIV/AIDS. CHAPTER 58 952 9781405145497_4_058.qxd 29/03/2008 02:57 PM Page 952

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956 Children with impairments of vision or hearing are reported to have higher rates of problems in psychosocial adjustment and of psychiatric disorder than typically developing children. However, potentially the only thing a deaf child cannot do is hear, and a blind child cannot see. In order to understand the sources of children’s vulnerability, it is necessary to consider how impairment may link to mental health outcomes. Therefore, this chapter is structured in terms of impairments, functional limitations, mediating variables and outcomes including social participation (WHO, 2004). Our intention is to provide an overview of the issues that most affect children’s development and well-being, based on the research literature, and to offer a source of guidance for professionals on how to interpret the needs and behaviors of children appropriately. However, one of the main challenges lies in evaluating the validity of the picture presented in past literature. Currently, much received wisdom is being challenged. Therefore it is necessary to keep in mind throughout this chapter the question: To what extent have reported problems in psychosocial adjustment arisen from late identification of impairment, lack of appropriate guidance to parents and limitations in education and opportunity for children? Sensory Impairments Definitions and Prevalence Prevalence figures for sensory impairments in childhood depend on the various definitions used. In the developed world, about 10–20 in 10,000 children have a severe visual impairment that has educational implications (Rahi & Dezateux, 1998; Walker, Tobin, & McKennell, 1992). Around one-quarter of these have only light perception or less, and are thus “blind” (profound visual impairment). Around 12 in 10,000 children per year are born with a hearing loss of 40 dB or more, with around half of these having a severe (over 70 dB) or profound loss (over 95 dB), these groupings hereafter referred to as “deaf” (Davis, Wood, Healy, Webb, & Rowe, 1995). In less developed countries, both types of sensory impairment are more common, with a larger range of causes. In classifying types and causes of sensory impairment, it is helpful to use the site of origin. Congenital visual disorders are cerebral or peripheral. Much of the developmental research referred to in this chapter concentrates on blind children with simple disorders of the peripheral nervous system (such as anophthalmia, Norrie’s disease and Leber’s amaurosis); i.e., children likely to have no other impairments (Dale & Sonksen, 2002). Nevertheless, where neuroimaging is available, it is clear that at least half of these children are likely to have brain lesions that may affect broader development in subtle ways (Waugh, Chong, & Sonksen, 1998). The main types of hearing loss are conductive and sensorineural; the latter has a genetic cause in at least half of cases. In most cases the gene is recessive, and one or both parents of about 10% of deaf children are themselves deaf. The other main causes of sensorineural deafness are maternal rubella, prematurity and infections of the nervous system, all of which are more likely to result in additional impairments (Freeman & Groenveld, 2000). The main cause of conductive deafness is otitis media with effusion (OME), with a prevalence of 12–14% in preschool children (Kvaerner, Nafstad, & Jaakkola, 2000). Conductive hearing loss tends to be mild to moderate, with a median of 25 dB (Klein, 2001). For some children there are early interventions that aim to ameliorate the nature of the functional impairment. Timing may be critical, as there are sensitive periods for recovery from lack of vision (Lewis & Maurer, 2005), or for deaf children to be able to combine visual and auditory information (Schorr, Fox, van Wassenhove, & Knudsen, 2005) and thus to have more effective speech understanding and language development (Harrison, Gordon, & Mount, 2005). Thus, early cataract surgery coupled with visual training can radically improve a child’s potential for functional vision. The introduction of hearing aids and cochlear implants makes an important difference to the sounds a child can hear, although again these must be appropriately supported. A major opportunity for transformation in professional practice has occurred recently with the introduction of the universal Newborn Hearing Screening Programme (NHSP). Infants can now be fitted with hearing aids as early as 2 months after birth, rather than on average at 2.5 years of age (UK data: Davis, Bamford, Wilson et al., 1997). For those deaf infants who do not derive useful benefit from hearing aids, the age at which cochlear implantation is considered is increasingly early. With the introduction of early intervention programs, including very early support for Mental Health in Children with Specific Sensory Impairments Helen McConachie and Gwen Carr 59 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 956 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

communication development (orally or through sign), the prospects for deaf children are now radically improved (Davis & Hind, 2003; Yoshinaga-Itano, 2003). The estimate for the prevalence of multisensory impairment in school-age children in developed countries is 1 in 10,000, a large proportion of whom will also have intellectual impairments (Bond, 2000; Nikolopoulos, Lioumi, Stamataki, & O’Donoghue, 2006). Given their heterogeneity, the chapter does not attempt to include children with multisensory impairment, nor those with later-acquired sensory impairments. Function Before we consider how impairment in vision or hearing may affect children’s development and functional abilities, some limitations of the descriptive and experimental literature must be acknowledged. First, as there are few psychometrically adequate assessment measures developed specifically for children with sensory impairments, some comparisons that suggest poorer levels of ability in children who are blind or deaf may instead reflect inappropriate questions or greater cognitive challenges for the child. Second, the circumstances of the assessment need to be considered, as young children with impairments are disproportionately disadvantaged by being asked to carry out unfamiliar tasks by an unfamiliar person (McConachie, 1995; Pérez-Pereira & Conti-Ramsden, 1999). Furthermore, most studies with deaf children who sign are presented by a hearing examiner accompanied by an interpreter, which is likely to lead to less than optimal presentation and be inhibiting for the child (Austen & Crocker, 2004; Hindley, 1997). The third limitation is the inevitable one of small numbers, given the low prevalence of severe levels of hearing and visual loss and the concentration on children without apparent evidence of additional neurological impairment. Early Language Development Deafness is expected to lead to delay in language development. However, considerable evidence suggests that deaf children brought up by fluent signing parents have the potential for early language development that parallels the spoken language development of hearing children (Bonvillian, Richards, & Dooley, 1997). Furthermore, for many children who have an early cochlear implant, there is evidence of speedy learning of first words (Nott, Cowan, Brown, & Wigglesworth, 2003; Spencer, 2004; Tomblin, Barker, Spencer, Zhang, & Gantz, 2005) whatever the cause of deafness (Nikolopoulos, Archbold, & O’Donoghue, 2006). There is continuing debate concerning the best approach to facilitating the early language development of deaf children, and difficulty in drawing conclusions from studies that are usually cross-sectional and underpowered. Nicholas and Geers (2003) conducted one of the better observational studies of parent–child interaction and conclude “There is clearly more than one path to successful language development in severe to profoundly deaf children” (p. 435). Following the widespread introduction of NHSP, along with early support and intervention, evidence suggests that, on average, language outcomes for children without other impairments are within the low normal range, and correlated with the children’s non-verbal cognitive level. YoshinagaItano, Sedey, Coulter, and Mehl (1998) compared 72 deaf and moderately hearing impaired children who had been identified between birth and 6 months, with 78 children identified after the age of 6 months. The early identified children had better receptive and expressive language skills by 36 months of age than later identified children (with a large effect size). As the research has expanded, the results suggest that children (without cognitive impairment) overall have an 80% probability of having language development in the normal range by 5 years (Yoshinaga-Itano, Coulter, & Thomson, 2001). What seems to matter in such studies is age of identification and early intervention, rather than socioeconomic status, the particular method of communication or degree of hearing loss (Moeller, 2000; Yoshinaga-Itano, 2003). What about fluctuating hearing loss? A detailed prospective study from New Zealand (Chalmers, Stewart, Silva, & Mulvena, 1989) was widely accepted as confirmation of parents’ and professionals’ concerns about the consequences of chronic fluctuating conductive hearing loss, as it found reduced verbal comprehension and expression scores, and raised levels of behavior problems, in comparison with controls. However, recent systematic review of randomized clinical trials suggests none to very small negative associations of otitis media with children’s later speech and language development (Roberts, Rosenfeld, & Zeisel, 2004). Undoubtedly, there are some children with recurrent infections and hearing loss for whom language outcomes are not good, such as children in low-quality daycare (Vernon-Feagans, Hurley, & Yont, 2002) but it seems that socioeconomic indicators are predictive both of language outcome and of duration of middle ear infections (Feldman, Dollaghan, Campbell et al., 2003). Therefore, the evidence suggests that fluctuating levels of hearing loss are not in themselves predictive of poor language and other functions in the longer term. Recent reviews (Lewis, 2003; Pérez-Pereira & ContiRamsden, 1999) concluded that blind children are not delayed in acquiring first words in comparison with sighted children. However, much of the evidence is from case studies (Mulford, 1988) and more representative group studies suggest some delay (McConachie & Moore, 1994). Differences in the content of the early vocabularies of blind and sighted children can be readily understood; for example, blind children’s first words include actions and tactile experience (e.g., bath, swing, poo; McConachie & Moore, 1994). Many blind children appear to learn language as “chunks” (Andersen, Dunlea, & Kekelis, 1984), which may lead to better apparent expressive language skills than their assessed level of comprehension in the first 3 years (McConachie, 1990). Although they may take atypical routes in language learning, for blind children “Language seems to have an important compensatory function, allowing the children access to the external world and social information SPECIFIC SENSORY IMPAIRMENTS 957 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 957

that they could not obtain by other means” (Pérez-Pereira & Conti-Ramsden, 1999, p. 8). Emotional Development It is clear that sensory impairment is no barrier to the formation of attachment by infants to their parents. At the time expected in sighted babies, blind babies are likely to smile when they hear their parent’s voice (Fraiberg, 1977). Once they start to reach with their hands, they explore faces and discriminate between parent and a stranger. Protest when the parent leaves takes somewhat longer in blind babies than in sighted babies, and this may be related to delay in understanding object permanence, as blind babies cannot keep track of people easily (Tröster & Brambring, 1992). Despite the primacy of the visual channel in the establishment of attachment (Stern, 1985), there are aspects of deaf babies’ experience that might have been expected to affect attachment. Before the introduction of NHSP, most hearing mothers would not have been aware of their infant’s hearing problem until later in the first year of life, and so would not have made adjustments in terms of touch, body postures and facial expression during interaction. However, experimental studies using the Strange Situation paradigm (Ainsworth, 1973) have not found a difference in security of attachment (Lederberg & Mobley, 1990). How do children acquire an understanding of the perceptions of others, a key skill in emotional and social development? For deaf and for blind children, research suggests that this understanding is delayed. However, some evidence is questionable. To assess understanding of false belief in blind children, McAlpine and Moore (1995) used a hamburger box containing a sock, and Minter, Hobson, and Bishop (1998) used a warm teapot filled with sand. As Pérez-Pereira and ContiRamsen (2005) pointed out, these materials are inappropriately confusing; children will have been discouraged from touching a teapot (if the family even has one) and the box will not smell of hamburger. When verbal tasks involving false belief are used (Peterson, Peterson, & Webb, 2000), children are able to succeed, even though at a later age than is usual for sighted children. Given blind children’s greater cognitive challenge in following key changes in the environment, and their need for conversational language skills in order to understand how events are experienced by others, some delay seems inevitable. The finding of delay in development of theory of mind in deaf children has been widely replicated (Peterson & Siegal, 2000). Children of parents who are fluent signers, and deaf children with moderate to severe loss who are successfully using spoken language, show less delay (Courtin & Melot, 2005; Jackson, 2001), indicating the importance of early effective communication. One factor that facilitates development of theory of mind is the extent to which mothers include talk about mental states in play with their deaf child (Moeller & Schick, 2006). Theory of mind understanding can be expected by adolescence, as shown by Rhys-Jones and Ellis (2000) in a study of the spontaneous use of mental state expressions in telling stories from pictures. These deaf adolescents also showed no difference from a hearing comparison group on a social judgment test. Nevertheless, subtle differences may persist, such as difficulties in taking account of another person’s perspective in negotiations (Terwogt & Rieffe, 2004). Play The development of symbolic play skills is closely related to the development of language. Spencer and Meadow-Orleans (1996) have shown appropriate play with toys such as a toolbox, dolls and a tea-set by deaf and hearing children at 18 months of age, although some deaf children with smaller vocabularies were not yet substituting one object for another. For blind children, understanding of objects and development of symbolic play is complicated. In the absence of vision, a doll is an irregularly shaped piece of hard plastic with strangetextured string at one end – not a “baby.” Therefore, the repeated report (Tröster & Brambring, 1994) and observation (Hughes, Dote-Kwan, & Dolendo, 1998) that blind children have limitations in symbolic play requires careful unpicking. In some circumstances, such as having a helpful play partner, blind children do play symbolically, as was found for twin girls (one sighted, one blind) studied by Pérez-Pereira and Castro (1992). Lewis, Norgate, Collis, and Reynolds (2000) found no difference between blind and sighted children 2–7 years old on the Test of Pretend Play, except for fewer object substitutions made by the blind children. Other blind children prefer talking play, acting out pretend dialogues between themselves and others (Lewis & Collis, 2005). Observations of blind children in nurseries suggest that they often play alone or rely on adults (Preisler, 1997; Skellenger, Rosenblum, & Jager, 1997). They have particular difficulty with outdoor play settings, where it is even more difficult to establish where other children are, and the boundaries of the space. McGaha and Farran (2001) found that blind children played more in parallel outdoors, and their initiations to other children in an inclusive preschool were less successful than indoors, in terms of number of conversational turns. Therefore, blind children clearly need skilfully planned support in order to develop successful interactions with other children in group settings at an early age (Webster & Roe, 1998). For deaf children, successful play with others is dependent on level of communication skills. Observing social play in preschool settings, Lederberg, Ryan, and Robbins (1986) found that deaf children tended to swap play materials with hearing children but were more likely to use a variety of communication functions with other deaf children. The children with better communication skills were able to play successfully in groups, to interact with teachers and to make and receive more communicative initiations. In order to succeed in inclusive settings, deaf children may need to have superior social skills (Marschark, 1993); for example, to overcome hearing children’s lack of awareness that they have to attract the deaf child’s attention before speaking. Martin and Bat-Chava (2003) have described the parent-reported coping strategies of 35 children aged 5–11 years in inclusive education settings. CHAPTER 59 958 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 958

The children had either a cochlear implant or hearing aids and mostly used speech in communicating. Encouragingly, about half of the children were described as confident in socializing with hearing children, and only five children were rated as having poor relationships with others (not related to type of aid). “Autistic Features” in Blind Children Association between sensory impairment and diagnosis of mental health disorders, including autism, is discussed below (see p. 963). However, it is appropriate to consider at this point “autistic-like features” in the behavior of blind children, such as frequent verbal imitations and formulaic speech, reversed use of personal pronouns, difficulties with symbolic play, and repetitive behaviours such as eye-poking and rocking (Lewis, 2003; Pérez-Pereira & Conti-Ramsden, 2005; Tröster, Brambring, & Beelman, 1991a; Wing & Wing, 1971). Many of these behaviors have an understandable function. For example, repeated head turning and rocking can give proprioceptive feedback to the blind child. Some behaviors seem to occur more when the child is bored (Tröster, Brambring, & Beelmann, 1991a) and they decrease between the ages of 3 and 6 years (Tröster, Brambring, & Beelman, 1991b). Formulaic speech seems to be useful to blind children, repeating whole phrases in order to explore how they apply, given that they have fewer other cues (Pérez-Pereira & Conti-Ramsden, 2005). Children may use repeated questions to keep in contact with others, and adults themselves use language more repetitively when talking with blind children (Kitzinger, 1984; Pérez-Pereira & Conti-Ramsden, 1999). The reported errors in the use of personal pronouns (Dunlea, 1989) may also arise in part from blind children’s tendency to learn language in chunks. Finally, we have already examined the problems in research assumptions about blind children’s symbolic play and theory of mind. Therefore, there is a persuasive argument to be made that “autistic-like” features in the early development of blind children without other impairments show no more than a surface similarity to autism. Ability and Achievement There is considerable concern that deaf children have poor academic achievements: is this related to ability or to other factors? The longitudinal study of Gregory, Bishop, and Sheldon (1995) found that 46% of young deaf adults had left school with no examination qualifications. Powers (1998) documented that only 18% of deaf children obtained the higher grades in GCSE (UK school leaving exams at 16 years) compared to 45% of hearing children. A good start with communication seems to be key to later achievement (Preisler, 1999). Long-term follow-up of 30 children with cochlear implants suggests a significantly better picture for young people’s studying and employment than previously (Beadle, McKinley, Nikolopoulos et al., 2005). The results of recent studies conducted on early identified deaf children using hearing aids and speech would point to the same possible conclusion (Yoshinaga-Itano, 2003) but longitudinal follow-up will give better indications of what deaf children in general can achieve with good educational support, and appropriate access to public examinations. Standardized assessment of the ability of children with sensory impairments poses many difficulties in administration and interpretation of results. The limitations of assessing deaf children’s ability with only one scale of an intelligence test, such as the Wechsler Intelligence Scale for Children (WISC), are considerable given the verbal component required to understand the instructions. Tests developed specifically for deaf children include the Snijders–Oomen Non-verbal Intelligence Scale (SON-R) for ages 2–17 years (Snijders, Tellegen, & Laros, 1989; Tellegen, Winkel, Wijnberg-Williams, & Laros, 1996). The SON-R is not simply a non-verbal test as it includes abstract and concrete reasoning. The Leiter International Performance Scale–Revised (Roid & Miller, 1997) does not have deaf norms, but is presented without language and used frequently in research. There are few instruments developed specifically to assess ability in blind children, and their norms tend to be older than would be considered valid in the assessment of sighted children. The Reynell–Zinkin Developmental Scales for Young Visually Handicapped Children (Reynell, 1979) cover social adaptation, sensorimotor understanding, exploration of the environment, verbal comprehension, expressive language structure and vocabulary, with norms for blind, severely visually impaired and sighted children aged up to 5 years. For older children, the Intelligence Test for Visually Impaired Children (Dekker, 1993) has four main factors: orientation, reasoning, spatial ability and verbal ability. Otherwise, assessors usually rely on a verbal scale of measures such as the WISC, although this may be of more use in understanding a profile of skills and difficulties rather than deducing absolute levels of ability. Some studies have suggested that blind children may be less good at tasks that involve making comparisons or relating different pieces of information, while having better than expected short-term memory (Lewis, 2003). Mediating Variables in the Child’s Environment Children’s developmental course is affected by their relationships, environment and experiences. In this section, we consider some of the mediating variables that affect outcome, with particular emphasis on parenting. Obviously, children’s educational environment, including the quality and frequency of support teaching, is important, but beyond the scope of this chapter. Early Parenting How do parents adapt to their child’s sensory impairment? Many studies have charted the impact of a child’s impairment on parents’ emotions and on levels of stress in the family (Jackson & Turnbull, 2004; Singer, 2006; Tröster, 2001), and how parents cope has been shown to be important for child outcomes (Kurtzer-White & Luterman, 2003). Parents of blind children have usually learned of their baby’s impairment early, SPECIFIC SENSORY IMPAIRMENTS 959 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 959

but with the advent of NHSP, concerns have been raised about the impact on parents of being told early that their child is deaf. Evidence so far suggests that, with appropriate intervention, mothers’ stress levels on average are low (Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002; Yoshinaga-Itano, 2001). Sighted parents are very likely to have no prior knowledge of blindness, and have to become particularly adept at “reading” the cues; the infant becomes still when listening and leans toward an object (rather than reaching). Parents need to adapt their communication habits; for example, giving emotional feedback through vocalizing when smiling, and by mirroring the infant’s movements (Fraiberg, 1977; Preisler, 1991). After the first 6 months, interest in objects means that sighted infants spend much less time in face-to-face interaction with their parents. The challenge for parents of blind infants is to judge their child’s focus of attention (Fraiberg, 1977; Preisler, 2001). Some research with sighted parents of blind children suggests that they may use language in less than optimal ways, giving children directions, asking what they want (when the children have few words) and labeling rather than talking about objects and experiences (Andersen, Dunlea, & Kekelis, 1993; Moore & McConachie, 1994; Preisler, 1997). A style of commenting on what the child does, involving objects in rhymes and routines, providing descriptions and joining with the emotional content of the child’s behavior seems to facilitate development (Dote-Kwan, Hughes & Taylor, 1997; Norgate, Collis, & Lewis, 1998; Pérez-Pereira & ContiRamsden, 1999; Preisler, 1997). Early successful interaction is vital for deaf infants and their parents. When establishing joint attention to an object, deaf parents seem well attuned and tend to wait until the infant has looked at an object of interest, and then to them, before signing its name or a comment about the object. Hearing parents who are learning signing may make more signing attempts than deaf parents do, but either these are not seen by the child or the child’s focus of attention may be interrupted by the parent (Lewis, 2003; Spencer, 2000). Luterman, Kurtzer-White, and Seewald (1999) refer to the impact of deafness on these early natural processes of interaction as causing “the system to crash” (p. 107) and cite the child’s inability to hear and respond to parents’ signals as a demotivating factor. Nevertheless, many hearing parents do adapt sensitively to their child’s needs, and this process will be aided by early identification of the infant’s impairment. The degree of emotional connectedness of mothers has been shown to be a significant predictor of deaf children’s early language gains (Moeller, 2000), even more so than for hearing children (Pressman, Pipp-Siegel, Yoshinaga-Itano, & Deas, 1999). At an early stage in language development, it may be appropriate for parents to be quite controlling in order to encourage communication from their child; but it is then important for parents not to continue with a “teaching” style but instead to have the sensitivity to hang back from asking questions and requesting clarification, so that children can take the initiative in conversation (Lewis, 2003; Luterman, Kurtzer-White, & Seewald, 1999; Power, Wood, Wood & MacDougall, 1990). In a detailed longitudinal study of 22 preschool children with cochlear implants, Preisler, Tvingstedt, and Ahlström (2002) found no clear relationship between their communicative, social and emotional development and cause of deafness, but did show the importance of a child-centered communication style by parents and teachers. There is considerable emphasis on problematic parenting in the older literature on young deaf children. For example, in an experimental study of problem-solving with 5-year-old children (Jamieson & Pedersen, 1993), it was notable that deaf children of deaf parents (and hearing children of hearing parents) succeeded in doing the puzzle alone after a joint attempt. Hearing parents tended to intervene even when their deaf child was succeeding, and the children requested help more often, as if they had learned to rely on others. Given the challenges to be faced by children with sensory impairments in becoming independent, parents’ style in building up their self-reliance is of great importance. Some studies (Gregory, 1976; Lederberg, 1993) have also suggested that parents respond quickly to children’s demands for attention because it may be difficult to explain the need to wait; children may then not learn how to take turns in social situations. For similar reasons of difficulties in communication, parents may be more ready to resort to physical punishment (Knutson, Johnson, & Sullivan, 2004; Schlesinger & Meadow, 1972). Thus, hearing parents of deaf children may need wide-ranging support in facilitating their child’s early development. Support and Training for Parents As soon as hearing loss is identified, parents need information and support to help them make informed choices about communication options, and this requires appropriately skilled and knowledgeable staff within effective early intervention programs. The Nebraska Diagnostic Early Intervention Program and the Colorado Home Intervention Program have had the most extensive evaluations (Moeller, 2000; Yoshinaga-Itano, 2003). Research has shown the importance of family-focused services in harnessing parents’ full involvement in early intervention programs, with level of involvement a strong predictor of outcomes for children at age 5 years (Moeller, 2000). Similarly for blind children, early programs help parents to stimulate the child’s capacity for vision, as well as to develop a mutually rewarding relationship. There is generally a lack of objective evaluation, although one program (Sonksen & Stiff, 1991) has demonstrated effectiveness through a partially randomized controlled trial (Sonksen, Petrie, & Drew, 1991). The UK government has published booklets for parents on visual impairment, on deafness and on multisensory impairment (Early Support, 2004). These are accompanied by Developmental Journals (2006), which allow parents and professionals to track developmental progress from birth to about 3 years of age, accompanied by Ideas and Activity suggestions, including sections on how to help the child who has “got stuck” in his or her development. There are many other website resources for both parents and professionals containing a wide range of materials (e.g., www.ed.arizona. 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edu/dvi; www.tsbvi.edu/bib/early.htm; www.babyhearing.org; www.deafnessatbirth.org.uk). Socioemotional Interventions for Children For both blind and deaf children, social interaction in school poses challenges. “Co-operative learning” is one approach to supporting social development that has been evaluated with both groups. Teachers are trained to set up learning activities in such a way that completion is impossible unless everyone participates. Co-operative learning strategies have been shown to promote self-esteem, socialization skills and positive interactions amongst children, including visually impaired 4-year-olds (D’Allura, 2002) and deaf 8-year-olds (Johnson & Johnson, 1986) with their peers. The PATHS (Promoting Alternative Thinking Strategies) Curriculum for deaf children (Greenberg, 2000; Greenberg & Kusché, 1998) is built on a model of social competence that emphasizes, from a foundation of good communication, the need for skills such as anticipation, reflection and imagination, as well as tolerance for ambiguity and for frustration. Thus, the program teaches children how to develop and maintain self-control, increase awareness of their feelings and ability to communicate about feelings, and improve problem-solving skills. Controlled evaluation of the program as implemented by teachers with 6- to 12-year-olds has indicated significant and sustained improvements in socioemotional adjustment, frustration tolerance and distractibility, with additional improvement in reading comprehension (Greenberg & Kusché, 1998). For blind children, the literature has a wealth of single case studies and small-scale descriptive interventions, which lack information about generalizability and maintenance of gains, but contain useful clinical suggestions. For example, JindalSnape (2005) described a behavioral program designed to improve social interaction of a blind child through selfevaluation of his facial orientation to others, and through feedback by peers. Peavey and Leff (2002) described an evaluation of “friendship groups” in school, designed to increase trust and open communication. Visually impaired students were able to talk about their difficulties and sighted students learned how to include the visually impaired student. Deaf Culture Within a predominantly hearing world, deafness is seen most commonly as an impairment or disability; in other words, within a “medical model.” A more general “social model” of disability, however, construes disability “as a consequence of society’s failure to make proper provisions for disabled people” (Gregory, 2002, p. 2). Members of the deaf community, who use a sign language as their preferred language, regard themselves as a linguistic minority group with a rich worldwide culture (Ladd, 2002), disabled only by a hearing-oriented society. The format “Deaf” rather than “deaf” is used in recognition of this status. Mental health professionals need to be aware of these differing models and sensitive to both the culture and the belief frameworks that exist around them and the issues raised as a consequence. For some young people there is a tension around their identity as Deaf or deaf (Skelton & Valentine, 2003). Adjustment and Vulnerability Having considered the effects of impairment of hearing or vision upon children’s development, and some mediating factors for development, we turn now to outcomes. For adolescents and young adults with sensory impairments do we expect to see a resolution of the different routes they may have taken through development, or is their healthy progress still at risk? The striking impression gained from studies of adolescents is of a generally good outcome. The one available population longitudinal study painted a picture of young adults with visual impairment having few friends, with less than half employed (Freeman, Goetz, Richards, & Groenveld, 1991). However, more recent cross-sectional surveys give some indication of how well blind children are able to achieve with early intervention to families, good support in inclusive school settings and legislation to combat disability discrimination. Large-scale surveys in the USA, Finland and the Netherlands have shown no significant differences from controls in self-esteem, locus of control, happiness, physical and psychological symptoms, relationships with parents and siblings, and self-reported empathy for others (Griffin-Shirley & Nes, 2005; Huurre & Aro, 1998; Kef, 2002). Visually impaired adolescents are less likely than controls to describe themselves as having many friends (Huurre & Aro, 1998; RNIB, 2001), but the smaller social networks of visually impaired adolescents seem to provide quality support (Kef, Hox, & Habekothé, 2000; Rosenblum, 2000) and act as a helpful buffer against feeling an outsider in school. Young people who are blind still report problems with access to some leisure activities, independent travel and attitudes of others (RNIB, 2001). For deaf adolescents, the issue of school placement may have more of a role in their social experience, maturity and self-esteem. For deaf students who sign and are at a specialist college, self-esteem is generally high (Crowe, 2003) and even higher for those who have at least one deaf parent who acts as a role model (Woolfe & Smith, 2001). However, the picture from older studies and those with mixed samples of children attending a variety of schools is more complex. Kluwin, Stinson, and Colarossi (2002) reviewed 33 studies published since 1980 and concluded that deaf students were generally less socially mature than hearing students, interacted with other deaf classmates more than with hearing ones and were only somewhat accepted by their hearing classmates. The effect of mainstream educational placement depended on the characteristics of the individual and on the support offered (Van Gurp, 2001). If children do not have adequate support to participate in the classroom then both academic achievement and social integration will suffer (Stinson & Antia, 1999). Several studies suggest that adolescents in mainstream settings have problems with loneliness, rejection and social isolation (Nunes, Pretzlik, & Olsson, 2001; Obrzut, Maddock, & Lee, 1999). SPECIFIC SENSORY IMPAIRMENTS 961 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 961

However, a recent Australian study of adolescents educated in fully inclusive settings found no difference between hearing and hearing-impaired students in self-reported loneliness and social participation (Punch & Hyde, 2005). Qualitative analysis revealed some difficulties such as self-consciousness and feelings of awkwardness, not related to level of impairment. New technology such as text-messaging has been shown to have benefits in terms of supporting social independence of deaf adolescents (Akamatsu, Mayer, & Farrelly, 2006). There are accumulating indications that very early intervention may have positive effects in terms of deaf children’s social outcomes. Five-year-olds identified by newborn screening have significantly higher levels of personal social skill development than later-identified children (Yoshinaga-Itano, 2003). Furthermore, children (mean age 10) using hearing aids or cochlear implants for several years have been found to have, on average, age-appropriate levels of communication and socialization skills on the Vineland Adaptive Behavior Scales (Bat-Chava, Martin & Kosciw, 2005). Such findings underline the importance of communication competence for positive adaptation. There are perhaps unexpected findings in relation to the severity of impairment. It has long been suggested, counterintuitively, that moderate hearing impairment is more problematic than deafness for psychosocial functioning (Myklebust, 1960). Recently, it has been shown that late identification has greater adverse implications for the personal social skills of children with mild hearing loss than for those with moderate to profound loss (Yoshinaga-Itano, 2003) and this may relate to the greater degrees of stress brought about by parent–child dysfunctional interactions found for parents of children with less severe degrees of loss (Pipp-Siegel, Sedey, & YoshinagaItano, 2002). Kurtzer-White and Luterman (2003) suggested one reason is that children with less severe loss respond inconsistently to sound, and have an ambiguous prognosis, thus increasing parents’ stress. A similar discussion can be found in literature on blind children. There is some evidence that for mothers of young children with severe visual impairment (i.e., with some form perception) stress is greater (Tröster, 2001), perhaps because they underestimate their children’s specific problems. Kef (2002) noted that adolescents with severe visual impairment had less positive adjustment than those who were blind. One specific educational issue was not being able to read print, yet not using Braille. Thus, problems may be greater for those who have more expectations put upon them to “fit in” or who try to “pass” as non-disabled (Freeman, Goetz, Richards et al., 1991). Mental Health Disorders For some children with sensory impairments, behavioral and emotional problems go beyond loneliness and frustration. However, a major difficulty in understanding the nature, degree and prevalence of mental health disorders is to disentangle what may arise from associated neurological damage rather than be attributable to sensory impairment (Carvill, 2001). Furthermore, there is evidence that young people with sensory impairments are at risk of emotional, physical and sexual abuse (Freeman, Goetz, Richards et al., 1991; Kvam, 2004; Sullivan, Brookhouser, & Scanlan, 2000). However, as the evidence largely comes from adults looking back, and special educational settings were noted to increase risk, protection may now be much greater. Prevalence of Emotional and Behavioral Problems Since 1994, there have been five studies giving estimates of the rate of mental health problems in deaf children (Hindley, Hill, McGuigan, & Kitson, 1994; Sinkkonen, 1994, cited in Hindley, 1997; Van Eldik, Treffers, Veerman, & Verhulst, 2004; Van Gent, 2003; Vostanis, Hayes, Du Feu, & Warren, 1997). Two included interviews with young people themselves, and elicited information about emotional disorders that had hitherto been underestimated. Hindley, Hill, McGuigan et al. (1994) used scales developed specifically for screening mental health problems in deaf children, the Parents’ Checklist (PCL) and Teachers’ Checklist, followed by interviews with a proportion of parents and children aged 11–16 years. The reported estimated prevalence of disorder was 43%. However, the study was not population-based, and Vostanis, Hayes, Du Feu et al. (1997) found that the PCL overestimated problems. Studies using the Achenbach Child Behaviour Checklist (CBCL) have suggested that 27–41% of deaf children have problems in the borderline or clinical range. The highest estimate was by Van Eldik, Treffers, Veerman et al. (2004), who compared the rates of total problems in children aged 4– 18 years with Dutch CBCL norms (17%); however, as threequarters of the children attended one regional educational institute, and total problems were related to parents’ report of poor communication with the family, the results may be subject to some confounding. Only one questionnaire study had a contemporary control (Sinkkonen, 1994); in contrast to the findings of the other four studies, teacher report of behavior problems showed no significant difference between deaf children and young people aged 6–21 years (19%) and controls (16%), although low communication ability was associated with raised scores on hyperactivity. The pattern of problems in deaf children that might present to a mental health service is similar to that in hearing children (Hindley, 2000), but some of the medical causes associated with deafness (such as extreme prematurity) may also be associated with raised rates of autism spectrum disorder and attention deficit/hyperactivity disorder (ADHD; Hindley, 2005). A practitioner review by Roberts and Hindley (1999) gives useful case examples of specific mental health disorders, and the management strategies adopted. Although most studies have demonstrated a higher rate of emotional and behavioral problems in deaf children and adolescents than in the hearing population, there remains some uncertainty about how much higher once factors such as additional impairments and validity of measures are taken into account. The evidence suggests that, where adequate CHAPTER 59 962 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 962

language development has been achieved, a high rate of problems may not be inevitable. In Wallis, Musselman, and MacKay’s (2004) longitudinal study of deaf adolescents’ mental health (using an adaptation of the Achenbach Youth Self-Report), the three groupings consisted of those who always used oral communication, those who had used sign from early childhood and a “sign mismatch” group who had learned to sign later or whose parent had not signed to them in early childhood. The oral group had the most positive self-report (only 20% in the borderline or clinical range), with the sign mismatch group the most problematic (63%). The total population study in Finland by Sinkkonen (1994) reported that all the mothers and almost all fathers had sign language skills. Thus, effective early communication, and community support, may underpin that study’s finding of a lack of difference in rate of behavioral problems. In this time of rapid change, only close follow-up of children given good support after NHSP will show what degree of emotional and behavioral problems are really a consequence of deafness itself. There appear to be no recent population-based studies in blind children or adolescents. Clinic-based studies suggest that some children are particularly vulnerable. Around onethird of 102 blind children from a clinic population, who had had apparently typical development in the first 16 months of life, showed developmental setback (plateauing or regression) in their second or third year (Cass, Sonksen, & McConachie, 1994). Only one child with severe visual impairment showed a similar developmental pattern. In addition to probable neurological involvement, 60% of the children with setback had adverse social or medical histories. In some of the children, the developmental pattern was of increasingly disordered social communication and they were likely to meet criteria for a diagnosis of autism. The only study to suggest an overall rate of disorders in blind and severely visually impaired preschool children without other disabilities is by Ophir-Cohen, Ashkenazy, Cohen, and Tirosh (2005). They considered 74 children who attended a specialist unit between 1975 and 1993, and recorded a disorder in 21%, defined when problems were still evident after 6 months in the early intervention program. How generalizable this finding might be is unclear as the authors comment that the children’s difficulties in insecurity, withdrawal, attachment problems, inattentiveness, impulsive or hyperactive oppositionaldefiant behavior, and temper tantrums could not easily be classified within DSM-IV (and a validated alternative such as Zero-to-Three, 1994, was not used). Sleep problems are common in blind children, at 40–50% (Stores & Ramchandani, 1999). Nevertheless, given the picture from surveys of adaptation in adolescents, it seems possible that the developmental and social difficulties encountered early on by blind children without neurological impairment may not progress to serious emotional and behavioral disorders at school age. Autism Population-based estimates for autism in blind and in deaf children are lacking. In a large series of hearing impaired children attending audiology clinics, Juré, Rapin, and Tuchman (1991) estimated a prevalence of autism of 5.3% and noted that, with co-occurrence, both late diagnosis and inappropriate educational management can ensue. For blind children there are no comparable large-scale studies, but the co-occurrence of autism is suggested to be much higher (Pring, 2005). Hobson, Lee, and Brown (1999) carefully matched sighted children with autism to nine blind children with autism, and found some differences in the patterning of clinical features. The blind children showed more abnormality in the use of objects and in motor stereotypies, but less abnormality in the degree of engagement with others and in pretend play. Hobson (2005) speculated that long-term follow-up of blind children with autism may indicate that they have a less severe primary social incapacity than sighted children with autism, and therefore may have a better overall outcome. Issues in Mental Health Assessment When assessing a child who has severe hearing or visual impairment, a number of factors will require consideration. The child will need to take time to get used to new people and the room; a blind child will be likely to ask questions about what is happening and why, and want to touch any assessment toys. For deaf children, effective communication is vital. Clinicians cannot expect to rely on writing, as deaf children are likely to have significant reading comprehension difficulties even if their word identification is good (Wauters, van Bon, & Tellings, 2006). Where the child’s preference is for sign, clinicians with no or limited signing skills will need to work with an interpreter, which introduces several new dimensions to the assessment. First, families like to have advance notice of who is interpreting as they may know the person already. Teachers and parents are not appropriate as interpreters, both because they may inhibit what the child wants to communicate, but also because they are not trained as interpreters and may miss out important information. It is important to explain that the interpreter will abide by rules of confidentiality. Second, there must be a rule in the session that only one person speaks at once, and it is important to look at the child rather than at the interpreter. Sufficient time must be allowed, including time for the interpreter to take breaks. Third, it is unlikely that the interpreter will have had any training in child mental health or in language development. Their training has been in adult use of sign, and they may not understand child development of sign and how children express themselves. It is vital to brief the interpreter about the purpose and techniques of the session; interpreters are trained to enhance meaning, but the clinician will want at times to know if communications are unusual or disordered. It is important to distinguish grammar differences for those who use sign language from language disorder, and from thought disorder (Hindley, 2005; Roberts & Hindley, 1999). In addition to previously mentioned socio-emotional measures validated for use with deaf children (e.g., PCL; Hindley), clinicians may use the Meadow–Kendall Social and Emotional Adjustment Inventory (Meadow, 1983) with 59 items completed SPECIFIC SENSORY IMPAIRMENTS 963 9781405145497_4_059.qxd 29/03/2008 02:57 PM Page 963

by school staff. Sullivan, Brookhouser, & Scanlan (2000) provide a protocol for interviewing deaf children about abuse (pp. 435–443) and include a recommendation that deaf children respond best to direct questions rather than free recall. For blind children, fewer adaptations are required for mental health assessment. It will be important for the clinician to translate into words information that might usually be conveyed non-verbally. It will also be important not to overinterpret elements of the child’s behavior such as posture, facial orientation or expression, as well as “autistic-like” behaviors. There appear to be no recent adaptations of mental health assessment tools for blind children; as for deaf children, many research studies utilize the Achenbach CBCL and the Vineland Adaptive Behavior Scales. For sleep disorders, it is certainly the case that difficulties in light perception may lead to alteration of sleep–wake cycles. However, problems in parental inconsistency, overprotectiveness, not setting limits and not establishing routines are more of a determinant, and require assessment through interview and parent diaries (Stores & Ramchandani, 1999). Interventions and Services for Children with Mental Health Disorders This chapter has indicated that deaf children have been at particular risk of developing mental health problems, yet they experience significant delays in access to services (NDCS, 2005). The UK National Deaf Children’s Society recommended, in addition to early programs of structured intervention for families of deaf children: local intervention programs in schools to promote positive mental health, and build self-confidence and problem-solving skills among deaf children; school antibullying policies and practice; a specialist child protection service; and primary mental health care workers specifically for deaf children and young people. A national specialist service in London uses outreach with other child and adolescent mental health services, and also video-link to consult with some young people who use sign. The above recommendations and developments build on the Department of Health best practice guidance for Mental Health and Deafness published in 2005, and the Deaf Mental Health Charter produced by the Mental Health Foundation and the National Society for Mental Health and Deafness (DoH, 2005; Sign, 2005). Similar strategies and standards are being pursued by generic and specialist mental health services for deaf children and young people in other developed countries (e.g., from the Boys Town National Research Hospital, and the Laurent Clerc National Deaf Education Center, Gallaudet University, USA; from the European Society for Mental Health and Deafness). Conclusions The development of children with sensory impairments does not allow easy generalizations. 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Approaches to Treatment v 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 969 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

971 The purpose of this chapter is to summarize the process by which one can conceive, design, implement, monitor, evaluate and sustain empirically based community-operated interventions and services. The focus is on the process, not the content, of such interventions and services. As such, the discussion accepts (and does not cover) the existing literature on the problem or target behaviors as well as on approaches to preventing or treating those behaviors as the starting point of the process. There is relatively little scholarly analysis and even less empirical validation of this process per se (see Fixsen, Naoom, Blase et al., 2005). Consequently, this chapter relies to a greater extent than is typical on the experience of the authors together with those of others and what scholarly work does exist. Scope and Definition The scope of this chapter can be further specified by considering the working definitions of certain key concepts. Community-based Community-based interventions and services are those that are implemented and operated by service professionals in the community. Often, but not always, such services are part of a demonstration and evaluation project investigating whether the intervention or service can be created, organized, implemented and produce benefits in participants. If successful, the same type of professionals will provide the service in the community on a routine basis. In contrast, innovative or experimental services conducted in a specialized environment (e.g., laboratory, school) by specialized practitioners (e.g., academic educators or social workers) do not fall in the chapter’s purview. Thus, community-based services represent the most ecologically valid version of the service and the last step in the basic–applied research continuum. Interventions and Services The services to be considered consist of organized supports and activities designed to promote the health, education and welfare of children, youth and families. They focus on target behaviors that tend to be public rather than strictly intrapsychic. As such, they consist of problem behaviors that come to public attention and that require public resources to prevent or treat (e.g., abuse and neglect; drug and alcohol problems; antisocial behavior and delinquency; poverty, unemployment and public assistance; poor parenting; and mental health prevention, detection, diagnosis and referral). While participants may receive services individually or in groups, the services of concern do not include traditional private or group psychotherapy (APA Presidential Task Force on Evidence-Based Practice, 2006; Weisz, Jensen-Doss, & Hawley, 2006). Instead, they are closer to services within the domains of community psychology and psychiatry, social work, public health and education. Prevention and Treatment/Remediation The services include both prevention and treatment/remediation, although the distinction between these categories often blurs. For example, individuals come to public attention and are referred to services because they have already displayed certain problematic behaviors or are substantially at risk of doing so; the services focus on treating/remediating the manifest behaviors, preventing additional or more extreme undesirable behaviors, and promoting more positive behavioral alternatives. Evidence-based Services that are evidence-based have some research supporting their potential or actual effectiveness. While some people reserve the phrase “evidence-based program” for a wellarticulated service program that has been empirically shown to be effective and could be replicated, we also use the term to refer to new programs based on principles or consisting of components that have theory and evidence that support their likely effectiveness. Unfortunately, no clear standard prescribes how much or what kind of evidence is required to substantiate the claim of “evidence-based” (see p. 975) so that use of the phrase has become commonplace and less meaningful in an era in which policy-makers and practitioners value and require evidence-based practices (Groark & McCall, 2005; McCall, submitted). Universal, Quasi-universal and Targeted Services Strictly speaking, universal services are available to everyone. For example, public education and some form of social security Community-Based Interventions and Services Christina J. Groark and Robert B. McCall 60 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 971 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

or public retirement benefits are universal in many countries. Universal programs tend to be most appropriate when everyone in society can benefit (e.g., public education, retirement benefits) or when the target group is broadly dispersed in the population (e.g., smokers, automobile drivers, obese children) or not readily identifiable and/or without clear predictive risk factors (e.g., abusive parents). They often have the advantages of reaching large numbers of people, some of whom otherwise would not be identifiable, and satisfying broad crucial social needs (e.g., education). However, only a few social needs merit the cost of very intense services (e.g., education); some are inefficient because many people are reached or served who do not need the service; and some programs benefit the educationally, financially and behaviorally advantaged members of society more than those of relative disadvantage, because such individuals are more likely to take advantage of the program and already have a head start on achieving its goals (Ceci & Papierno, 2005). Truly universal programs are not within the focus of this chapter. Instead, we will emphasize “quasi-universal” programs, which are ones that are available to all individuals within a geographical area (e.g., neighborhood, town) or institution (e.g., an entire school, orphanage), and such programs may or may not have additional eligibility criteria, such as income level (e.g., Head Start early childhood care and education programs in the USA). These programs tend to have broad goals (e.g., improvement of family functioning, parental psychological and economic self-sufficiency; improvement of child development, school readiness, and life success), but some have more specific aims (e.g., school readiness). Conversely, targeted programs (see chapter 61) are often restricted to participants having certain specific characteristics that may exist in relatively small percentages of the population (e.g., drug addiction, blindness, physical disabilities) and may require intense (e.g., detoxification) or extensive services (e.g., for children with severe disabilities). Quasi-universal programs tend to be most appropriate for conditions and services in between those for truly universal and highly targeted programs; for example, when the target group is concentrated in low-income neighborhoods and when the needed service is moderately intense or extensive and clearly needs to be targeted to some extent to be cost-efficient and to benefit those most in need (e.g., Sure Start in the UK, Head Start and offered to all in low-income neighborhoods in the USA). They have the advantage of having a large percentage of participants who need the service, but they may not serve all in society who need it (e.g., low-income families who live in unserved neighborhoods). Examples of Different Quasi-Universal Programs We describe several examples of quasi-universal programs that illustrate some of their commonalities and differences, many of which will be discussed more fully later. Nurse–Family Partnership (formerly Nurse Home Visitation Program) The Nurse–Family Partnership (NFP) program (Olds, Henderson, Kitzman et al., 1999) is aimed at first time, low-income, higher risk mothers to improve pregnancy outcomes by reducing health-related adverse behaviors (e.g., smoking, alcohol consumption, drug use); improve child health and development by teaching parents to provide more responsible and competent health and behavioral care; and promote the economic self-sufficiency of families by encouraging planned pregnancies (i.e., fewer and more widely spaced) and supporting education, secure employment and linkages with other health and human services within the community. The program is being implemented in nearly half of the states of the USA and some other countries. It is quasi-universal for high-risk first-birth women located in the geographical region in which it is offered. The program relies on nurses to visit the homes of participants, preferably during pregnancy and throughout the child’s first 2 years. The program is heavily centrally prescribed, with specific and concrete goals and activities, although some tailoring to the needs of individual families must occur. The focus on small concrete specific goals from visit to visit and throughout the program likely contributes to the ease of implementing the program and positive outcomes. The program was evaluated in three sequential studies in three USA cities (Olds, Henderson, Kitzman et al., 1999). Pregnant women who had not previously given birth and who had at least one additional risk factor (e.g., low-income, unmarried, low education, unemployment) were randomly assigned to a treatment group (nurse home visitors, transportation to periodic health visits and home visits until the child’s second birthday) versus a variety of control conditions that included fewer or shorter services. Samples ranged from 400 to 1139 with a predominance of either White, African-American or Hispanic women in different cities. Results showed benefits to mothers and children, but these were not pervasive and tended to occur under specific experimental and non-randomized circumstances: if nurses rather than paraprofessionals did the home visiting, if home visiting lasted until the child’s second birthday and especially if the mother was at higher risk (e.g., unmarried, smoker, very low income/education). For these groups, NFP mothers were more likely to be employed and have better life skills, fewer problem behaviors, better reproductive histories, improved parenting and less abuse; their children improved in health, socioemotional, language and cognitive development as children and with reduced criminal and behavioral problems, sexual activity and substance use as teenagers. A similar but more intensive and extensive home visiting program in New Zealand produced similar (but not identical) results (Fergusson, Grant, Horwood, & Ridder, 2005, 2006). Early Head Start Early Head Start (EHS) is an attempt by the US government to provide health care, child care, family support and parent education to primarily low-income families. EHS is quasiCHAPTER 60 972 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 972

universal in that its services are available to all low-income families with at least one child approximately from birth to 3 years of age in the geographical area in which the program is located. A small percentage of families who are not low income and others who have children with disabilities are also enrolled. The program is a combination of a centralized set of program requirements and standards for implementation with some local flexibility to create a program that matches the needs of local participants. For example, child development services are required, but they can be provided in centers, in the homes of participants through home visiting, or in a mixture of the two. Seventeen programs were selected from applicants to provide EHS services and to participate in a research and evaluation consortium. The total evaluation followed 3001 families who were randomly assigned to EHS or whatever other program parents chose. EHS was unusual in having local evaluation specialists at each site supervise data collection, consisting of core assessments common across the 17 sites plus additional assessments to answer specific research and evaluation questions pertinent to that site. The consortium met periodically to advise the cross-site evaluation team and participate in subsets of sites that had similar programs and similar research interests (e.g., the role of fathers). When EHS children were 3 years old, they performed better on measures of cognition, language and socioemotional functioning than control peers, and EHS parents were more supportive of children’s emotional, cognitive and language development and more likely to be in education or job training. However, the benefits of EHS varied with nonrandomized characteristics of participants and implementation. For example, benefits were greater for African-American families, families who enrolled during pregnancy versus after delivery, and families with a moderate rather than a substantial number of demographic risk factors. Further, programs with a mixed center and home visiting approach and those that more fully implemented the comprehensive performance standards had a wider range of larger benefits. Also, children who transitioned from EHS to formal early care and education programs between ages 3 and 5 had better early reading-related skills at age 5 (Administration for Children and Families, 2002; Love, Kisker, Ross et al., 2005; http://www.acf.hhs.gov/programs/ OPRE/EHS/EHS_resrch/index/htlm). Comprehensive Child Development Program The Comprehensive Child Development Program (CCDP) was a multisited demonstration project in 34 sites around the USA to provide comprehensive health, education, mental health and welfare services to low-income families with children from birth to 1 year of age at the beginning until the child reached approximately 5 years. Its purpose was to increase the financial and psychological self-sufficiency of those families and improve the children’s development. It was quasi-universal, allowing all community members to participate, but sites were targeted to low-income areas. The program was a combination of central prescription and local innovation. Services were required to be comprehensive, because high-risk families tend to have a variety of different needs, including obtaining basic necessities (shelter, food, medical care), preparation for employment (education, training), mental health services (e.g., drug and alcohol), child care and parenting education (for further information about parent-based programs in general see chapter 64). While specific services were to be tailored to the needs of each family and thus could vary between families and sites, certain procedures, such as the frequency of contact and devising individual family plans, were specified by the federal government. A central evaluator conducted an evaluation on 21 sites, which had randomly assigned either individuals or site locations within their area. An intent-to-treat strategy was employed. However, the government awarded separate contracts for the central evaluator and the management information system developer, and these two databases were never merged across sites so that the nature and extent of services as well as specific family goals could not be related to outcomes. Results indicated that twice as many mothers in CCDP treatment sites became employed and improved their financial status as comparison mothers, but there were few other benefits for parents or children (St. Pierre, Layzer, Goodson, & Bernstein, 1997a,b). However, sites varied substantially in the nature and extent of the services they provided, families in the comparison group obtained on their own behalf almost as many services as those in the CCDP groups, families differed in their individual goals and the services they used but the intent-to-treat strategy assessed each outcome on all participants, regardless of their individual goals, nature and extent of services, or length of participation in the program (Gilliam, Ripple, Zigler, & Leiter, 2000; McCall, Ryan, & Plemons, 2003). School Development Program Comer’s School Development Program (SDP) seeks to improve schools, primarily in low-income neighborhoods, and student academic performance and skills by mobilizing adults to support student learning and development (Comer, 1988; Comer, Haynes, Joyner, & Ben-Avie, 1996; Joyner, Comer, & Ben-Avie, 2004). It is quasi-universal because an entire school – administrators, teachers, students, parents and local organizations – and increasingly an entire school system may be involved. SDP is operating in hundreds of schools in dozens of USA states and other countries. The program is planned and implemented within each school or school system, rather than by some central body. The program consists of a structure and process, rather than a set of specified actions, services or directions. Three structures comprise the basic system on which the Comer process is built. The School Planning and Management Team is composed of administrators, teachers, support staff and parents. It is responsible for developing a comprehensive school plan; setting academic, social, and community relations goals; co-ordinating all school activities, including staff development programs; and monitoring the progress to identify needed changes. The Student and Staff Support Team consists of the principal and professionals in child development and mental health, such as COMMUNITY-BASED INTERVENTIONS AND SERVICES 973 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 973

school counselors, social workers, psychologists and nurses. It promotes the social conditions and relationships necessary to connect all of the school’s student services; it facilitates the sharing of information and advice; and it addresses individual student needs, obtains resources outside the school and develops prevention programs. The Parent Team is composed of parents. It selects representatives to serve on the School Planning and Management Team and develops activities for the parents to support the school’s social and academic programs. Central to the process are three school operations including development of a comprehensive school plan, provision of staff development opportunities, and assessment and modification. Evaluations conducted by SDP and independent professionals have shown that the program can improve school climate, student behavior and student achievement (e.g., Cook, Hunt, & Murphy, 1998; Haynes, 1995), but results have not been uniformly positive (Cook, Habib, Phillips et al., 2000; Neufield & LaBue, 1994). Success seems to depend on how extensively and vigorously the process is pursued and implemented. This result is concordant with research conducted years earlier (Maughan, Pickles, Rutter, & Ouston, 1990; Ouston, Maughan, & Rutter, 1991) revealing that non-experimental changes that produced better attendance and school performance in students rested heavily on the extent to which there was a clear vision of and process to guide change and a focus by all of its administrators, staff, students and parents on improving the entire school – precisely what SDP intends to guide. Sure Start Local Programmes Sure Start Local Programmes (SSLPs) is an attempt to reduce child poverty and social exclusion in the UK (the gap between rich and poor) with a quasi-universal program within certain geographical areas that are relatively disadvantaged (Rutter, 2006). It is aimed at infants or young children. Support for the program is widely available, and numerous sites have been continued, modified or created across the UK. Programs and services were largely locally created and unspecified. The central government required five core service themes: 1 Outreach and home visiting; 2 Support for families and parents; 3 High-quality play, learning and child care; 4 Primary and community health care, including advice about child and family health; and 5 Support for children and parents with special needs. Services within these domains were to be “evidence-based” but their nature and extent were up to local agencies. It was expected that existing services would be improved and coordinated, and that facilities for early childhood care and education would be expanded, remodeled and otherwise improved. The government’s rationale was that a minimally targeted program open to all in the area would minimize any stigma associated with using the program, and localities should have the opportunity to tailor services within the five areas to fit the needs of their local participants and existing services. An extensive national evaluation (National Evaluation of Sure Start Team, 2005a,b) was conducted, but with at least two constraints imposed by government: first, neither families nor sites could be randomly assigned to Sure Start or a comparison condition because Sure Start was expected to be successful, and random assignment would unnecessarily deny services to certain families, and, second, that the services would not be “manualized,” which meant that no site was required to specify, and no monitoring information would be gathered on, the nature and extent of services provided. These constraints meant that there was no uniform Sure Start program, sites were extremely heterogeneous in the nature and extent of services provided, it was nearly impossible to relate any characteristics of the nature and extent of services to outcomes, and the opportunities for a comparison group were limited. Nevertheless, the national evaluation was able to study 150 SSLP sites in which the program had been initiated for at least 3 years and 50 comparison sites that had not yet begun to implement SSLP. Extensive data were collected on participants, administrative and broad characteristics of the SSLP services, and parental report, observations and developmental assessments on a variety of family and child (9–36 months old) outcomes. The evaluation used an intent-to-treat strategy (see p. 984) in which all families eligible within an SSLP area with 9- to 36-month-old children were included in the sample regardless of the nature and extent of services received. Given the large number of possible outcomes for parents and children, SSLP was associated with consistent benefits for very few. For example, SSLP sites operated by health agencies and other local authority agencies did better than those led by voluntary agencies. In contrast to the NFP, there were some adverse effects the more disadvantaged the family (e.g., mothers who were teenagers, single parents, unemployed parents), including slightly lower scores of children on verbal ability, social competence and more behavioral problems. Similar to EHS, there were slight benefits for families who were not so disadvantaged, including fewer behavioral problems, more social competence and less negative parenting (Belsky, Melhuish, Barnes, Leyland, & Romaniuk, 2006; National Evaluation of Sure Start Team, 2005b). Summary While not intended to be representative of quasi-universal programs, these projects varied in how specifically and concretely the program was prescribed centrally versus the amount of local flexibility allowed and in how the programs were implemented and evaluated. The remainder of this chapter focuses on these aspects of program development, implementation and evaluation. The next section of the chapter considers various issues in bringing evidence to the creation of evidence-based programs in the community. Then, principles of collaboration are offered, because most community-based programs are or should be developed, implemented and evaluated by a collaborative team whose members are often unaccustomed to working with each other and whose values and roles may conflict. CHAPTER 60 974 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 974

We next consider program design, which may occur at the national, state/province or local level and be very specific and detailed or consist of broad principles or service domains. We consider how such programs may be implemented, followed by a discussion of certain issues in their monitoring and evaluation. Finally, we discuss sustainability, which includes maintaining program effectiveness year after year as well sustaining funding. Evidence and Evidence-Based Interventions and Services Policy-makers and funders in many countries demand that the services they initiate or support be “evidence-based,” that is, be rooted in empirically supported principles and preferably have already been demonstrated to produce benefits for participants (for an overview of treatment evaluation see chapter 18). The simplest and presumably most expeditious and effective strategy for creating and implementing service programs is to replicate “proven programs.” Indeed, for some policy-makers, this is the only definition of an “evidence-based program.” Requirements for Services Replication While the rationale for service replication is straightforward, it makes certain assumptions that must be met for this strategy to be effective, and such premises are often not fulfilled (Groark & McCall, 2005; McCall, submitted; McCall, Groark, & Nelkin, 2004). • One or more programs must have been demonstrated to have been effective. Obviously, there must be a service program that has been implemented, evaluated and found to be effective to be a candidate for replication. Such demonstrated programs exist for teenage problem behaviors including school failure, risky sexual activity, substance abuse, delinquency and violence (Weissberg & Kumpfer, 2003) and for lowering rates of abuse and improving parenting skills for high-risk mothers (Olds & Kitzman, 1993), but this is not the case for many areas needing services. For example, nearly 50 years of research on early childhood education indicates such programs are beneficial, but much less research exists on specific curricula that might be replicated. • The service must be packaged in detail. Relatively few service programs, even demonstration programs intended to be replicated if found successful, have a “manual” describing all of the elements of the program and its implementation that practice professionals elsewhere can use to replicate the program. • Local service providers must be willing to replicate the original service. A major tenet of good therapeutic practice is to match the treatment to the specific characteristics of the client, so it is not surprising that agencies often want to adapt a model program to fit their own specific type of clientele, local social and policy circumstances, and each individual client. Indeed, a major principle of family support programs is that each individual family specifies their strengths and needs and a program of referrals, services and supports is tailored to their individual profile. But, even for services that are comprehensively and specifically prescribed, the service program may differ substantially from one incarnation to another (Gilliam, Ripple, Zigler et al., 2000; McCall & Green, 2004), and often no research exists suggesting whether such modifications improve, harm or have no influence on program effectiveness. • Will a replicated program also replicate the benefits of the original demonstration? Even if the program is as faithfully replicated as possible, it is not clear that it will have the same benefits for participants in its replicated incarnation as it did in its original demonstration (Green, 2001). Demonstration projects are typically implemented by professionals who are highly energized, passionate and committed to the new program and who may have substantial expertise in creating relationships with clients and motivating them to participate and persist in the service regimen. However, the practitioners who volunteer or are assigned to replicate the program may not possess the same level of motivation, commitment and interpersonal expertise. Also, the intended participants may differ from those in the original demonstration, and some services are not equally effective with all types of participants. For example, physical punishment is often discouraged in parenting improvement programs but is very common among African-American families, and research suggests that it is not as deleterious to African-American as it is to middle- and upperclass Caucasian children (Baumrind, Larzelere, & Cowan, 2002). For these reasons, replicating proven programs may not produce replicated benefits; often the original demonstration is more effective than its replicates, which is why policy-makers and funders should evaluate replications and not assume that the program has already been shown to be effective and its replication does not need evaluation. Nature of the Evidence From a practical standpoint, a service program is never “proven”; rather, the evidence for its effectiveness will always be more or less “persuasive.” Further, not all research studies and demonstrations are equally persuasive; some designs and results are more compelling than others. From the perspective of a policy-maker or practitioner faced with a mounting behavioral or social problem, one picks the “best available service approach” almost regardless of the persuasiveness of evidence. Assessing the Evidence It would be ideal to have a simple scheme to assess the research literature on a service program, and such a scheme has been proposed (Chambless & Hollon, 1998; Mrazek & Haggerty, 1994) which literally provides a “grade” from 1 to 7 (1 is highest) for the persuasiveness of the evidence. But this particular approach seems too narrow, considers only a few types of research designs (e.g., randomized trials and replications), emphasizes internal over external validity and ignores a great deal of information (e.g., effect size, cost : benefit ratio) that COMMUNITY-BASED INTERVENTIONS AND SERVICES 975 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 975

would be valuable in making policy and service program decisions (Groark & McCall, 2005; McCall & Green, 2004; McCall, Groark, & Nelkin, 2004). Table 60.1 presents an alternative scheme (McCall, submitted) based on a broader representation of the standards of program evaluation research methodology. It has the advantages of being substantially more comprehensive, but it has the apparent disadvantages of being much more complex and not providing a simple grade for the research literature as a whole (although such a numerical rating scheme could be developed). In practice, the disadvantages may not be important, because research literatures are typically uneven and contain gaps, and they are best evaluated by academic research specialists who are capable of weighing different kinds of evidence and making judgments regarding the persuasiveness of the corpus of research. Some groups, such as the Campbell Collaboration (C2; Co-oper, 1998) and the US Centers for Disease Control (2006), CHAPTER 60 976 Table 60.1 Elements of a scheme for assessing the research evidence in support of a service program. 1 Program effectiveness (internal validity) To what extent does the research demonstrate that the program per se produces its intended benefits in participants? (Generally a > b > c in persuasiveness). (a) Randomized experimental and quasi-randomized evidence Studies using random assignment of individuals or larger units to program versus comparison conditions plus experimenter-selected units that are arbitrarily assigned to treatment versus comparison conditions (b) Non-randomized quasi-experimental designs (Cook & Campbell, 1979; Rossi, Lipsey, & Freeman, 2004). Studies lacking random or experimenter-controlled assignment (i.e., participants self-select to conditions) with some comparison provision (e.g., comparison groups, propensity score comparison individuals, instrumental variable estimation) that supports the inference of causality. Also, interrupted time series with three or more time points before and after the program (c) Non-random single-group designs with a pre- and post-program assessment These studies are more persuasive if they provide some additional evidence consistent with causality (e.g., dose–response effect; relations between program elements hypothesized to be causal mediators, such as fidelity of implementation or success of program implementation in individuals, and outcome benefits) 2 Elements of persuasive research design To what extent is the literature within each of the three design categories characterized by the following (the more characteristics the better): (a) A theory or cause-and-effect conceptualization that is well-supported by a variety of other research? (b) Large numbers and limited dropout? (c) Preprogram as well as post-program assessments to demonstrate change within individuals? (d) Assessment of program implementation that demonstrates the program was faithfully and completely implemented in the program group and less so or not at all in the comparison group? (e) Monitoring and assessment of participant exposure to program elements (e.g., number of service hours experienced, number of participants completing the entire program) and immediate effects of program on participants (e.g., training produced learning gains; program experience improved participants’ self-esteem) which are hypothesized to produce immediate or long-term outcomes? (f) Various participant characteristics otherwise thought to influence outcome are assessed, covaried or examined as moderators in all groups? 3 Replication To what extent has the program been shown to be effective in each of the three design categories in two or more different studies (separate groups of participants), especially (in order of increasing persuasiveness) if they were: (a) Conducted by the same investigators and providers but on different participants? (b) Conducted by the same investigators but using different providers and participants? (c) Conducted by different investigators using different providers and participants? 4 Effect size To what extent in each of the three design categories are the effect sizes associated with the program, measured in terms of odds ratios (Scott, Mason, & Chapman, 1999) and cost : benefit ratios, sufficient to justify replication? 5 Generality To what extent has the program been shown to be effective within each of the three design categories using as many of the following: (a) Participants varying in gender, age, education, income, race and ethnicity, severity of risk or problem condition, and other characteristics thought to be related to outcome and program effectiveness? (b) Providers who vary in education, training and experience in general and specifically related to this program? (c) Program characteristics that vary, such as budgets, facilities and tangible and personnel resources and other aspects that may influence outcome (e.g., size of program, number of participants per provider, hours of service per participant)? 6 External validity specific to the replication circumstances To what extent has the program been shown to be effective within each of the three design categories using program characteristics as described in 5 above that are similar to those likely to characterize the replicated projects? 7 Feasibility of replication Are the program and its implementation process described comprehensively and packaged in a way that providers new to the program can faithfully replicate the program? Characteristics of successful programs Does the literature support one or more characteristics that may be important to producing beneficial outcomes, because they are common components of programs that were successful, especially if they are not common components of programs that were not successful (such characteristics may be participant, provider and program characteristics [see 5 above] or the characteristics listed in Table 60.2)? Is there a strong theory of change and evidence on how or why the program is effective? 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 976

provide reviews of evidence on services for a variety of physical and behavioral health programs, and governments and foundations often operate consensus groups that bring together academic authorities to review literature and make specific recommendations regarding treatment approaches and services. The scheme in Table 60.1 makes more explicit the types of evidence and to some extent the standards that might be used by such groups to evaluate the literature. When the Evidence is Not Sufficient Except for the most thoroughly researched service programs (e.g., NFP), the research literature is not likely to cover all of the elements necessary to decide what kind of service will be most effective and how it should be implemented and operated. There may be gaps, uncertainties and technical limitations; no specific program may have a persuasive research track record; and doubts may emerge about how a program will need to be modified to fit the local clientele, service staff and circumstances. An alternative to prescribing a specific service program is to provide guidelines for service creation and operation that are supported by research and that permit creativity and flexibility in matching the service to local circumstances. Sure Start was extreme in this regard, requiring only domains of services and the admonition that they be evidence-based. Fortunately, the general characteristics of successful service programs are remarkably similar across services aimed at preventing or treating a variety of different problems of children, youth and families. Table 60.2 (Groark & McCall, 2005) presents an integration across several lists of characteristics of successful programs in early childhood care and education (McCall, Larsen, & Ingram, 2003), family support (Layzer, Goodson, Bernstein, & Price, 2001; Schorr, 2003) and the prevention of adolescent problem behavior (Kumpfer & Alvarado, 2003; Nation, Crusto, Wandersman et al., 2003). This list represents the beginning of a set of general guidelines which could be supplemented with additional characteristics unique to a specific type of service and problem area. While such characteristics are useful as guidelines to local service professionals and funders, the characteristics themselves are rarely researched directly to assess their role in contributing to service effectiveness (but see Olds, Henderson, Kitzman et al., 1999). Instead, they tend to be common characteristics of programs that have been demonstrated to produce benefits in participants. Nevertheless, coupled with other characteristics supported by research and best practices of service professionals, COMMUNITY-BASED INTERVENTIONS AND SERVICES 977 Table 60.2 Characteristics of successful collaborations among diverse professionals. [Based upon Butterfoss, Goodman, & Wandersman, 1996; Grobe et al., 1993; Kegerise, 1999; Mattessich & Monsey, 1992; Wandersman & Goodman, 1993. Table originally published in Groark & McCall (2005), reproduced with permission of the publisher.] A common purpose A collaboration is beneficial and likely to succeed if it is created to accomplish a purpose that each of the participants needs or wants but that none of the participants alone or in smaller groups can attain. The common goal is necessary so that each participant focuses on a single set of criteria, and the mutual dependency keeps the coalition together and lays the ground work for mutual respect Clear, concrete, achievable, specific goals A collaboration must identify common, clear, achievable and specific goals, both short-term process goals and long-term outcomes, plus a plan with concrete and realistic steps and a time schedule for achieving them Selection of participants The collaboration should bring together at the outset all individuals and/or organizations that are necessary to accomplish the goals, even though the contribution of some may not be necessary until the final stage. Collaborations may be small, consisting of a scholar and a service agency (e.g., school, hospital, early childhood center) or much larger, involving several organizations of the same or different kinds (e.g., family support centers, early childhood centers, schools, public and private funders, elected officials, media representatives). Early and continuous involvement of key players (e.g., policy-makers) creates feelings of ownership and loyalty which may be needed later Team players Participants must be selected for the resources and influence they may bring as well as for several personal characteristics, including the ability to get along with diverse people and groups, attend every meeting, represent their organization and commit its resources to the project, listen and understand divergent points of view as well as communicate clearly and honestly their own perspective, and accept a group decision even if it conflicts with their own self-interest Diversity The diversity of participants that is needed can present challenges. Some participants may hold stereotypic attitudes towards others, but such beliefs do not always apply to the particular individuals and organizations represented in a collaboration. Ultimately, the members of each group need to learn the skills that each participant can contribute regardless of stereotypic roles Strong, balanced, sensitive leadership Although all of the participants of a collaboration are necessary and should share in the rights, responsibilities and credit for the collaboration’s activities and products, strong leadership is essential for any collaboration to function smoothly, efficiently and productively. The leader must be neither dictatorial nor a benign chairperson; instead, he or she must be strong enough to structure the process and activities of the collaboration, move the group in the appropriate direction, encourage participants to be appropriate to the group’s process and goals, be sensitive to the needs and characteristics of each member without unnecessary accommodation, recognize and respect the contributions of each participant, and deal in a balanced and fair manner with disagreements and even conflicts within the group. 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such guidelines can communicate what research and professional practice have learned and permit modifications to fit local needs. Consensus Groups To produce such guidelines, consensus groups need to be composed not only of relevant scholars to assess the available research literature, but also service professionals, policy-makers and representatives of the intended clientele, and they need to be able to fill in the gaps in the research literature and come out with an action plan based upon the best available evidence and practice. The Pathways Mapping Initiative (PMI) developed by Schorr (2003) represents a structured process by which such a group can create a “map” or set of recommended guidelines for the processes and characteristics that are effective in reaching the outcome under consideration. PMI recognizes that the traditional knowledge regarding a service program or a type of service is typically too limited, comes from a small number of interventions that have been adequately evaluated, and usually fails to identify all of the elements that actually make the service effective. The PMI process broadens the knowledge base by permitting reasonable judgments and plausible interpretations of a preponderance of evidence based on professional experience as well as program evaluations coupled with strong theory. The process also attempts to curb idiosyncratic opinion by insisting upon broad consensus among its diverse members. The product consists of a combination of actions needed to produce the desired outcome, the key ingredients that are likely to make those actions effective and the community contexts that will influence program effectiveness (for examples see www.PathwaysToOutcomes.org). Proven Program or Principles? In practice, the best solution may be somewhere between replicating a well-specified proven program (e.g., NFP) and a set of broad service domains (e.g., Sure Start), a structure and process (e.g., School Development Program) or principles of successful programs (Table 60.2). True replication of a highly specified program is likely a myth (Friesen & Koroloff, 1990; Green, Rodgers, & Johnson, 1999; McCall & Green, 2004) – it does not really take place – but vague or unspecified characteristics, such as in Sure Start, permit too much local variation and unsubstantiated program characteristics. A compromise of as much specification as research substantiates coupled with reasonable local flexibility is most desirable (and is likely to occur anyway). Limits on the Transfer of Research and Best Practices to Communities Whereas a set of guidelines reflecting the research literature and professional best practices may represent a necessary first step in creating and implementing effective service programs at a local level, it is not likely to be sufficient. First, simply communicating this information has not resulted in localities adopting the most effective program strategies (Ringwalt, Ennett, Vincus et al., 2002; Wandersman & Florin, 2003). For example, until recently, the DARE program to prevent drug abuse had been adopted in 80% of school districts in the USA despite a research literature that showed it to be relatively ineffective (Ennett, Tobler, Ringwalt, & Fewling, 1994; General Accounting Office, 2003). Research-to-Practice Gap This gap may occur for several reasons. 1 The research knowledge is generated and communicated unidirectionally from researchers to practitioners and thus may be less relevant to the policy and practice context than is necessary. 2 The research and practice knowledge may be inadequately and ineffectively communicated to local practitioners and policy-makers. 3 Factors other than research and best practice contribute to service selection and effectiveness, such as the availability of a packaged program, ease of implementation, unique characteristics of local clientele, and local personnel and financial resources. Chinman, Hannah, Wandersman et al. (2005) identified four broad factors that influence whether communities adopt, create and implement evidence-based services. 1 Implementing high-quality service programs is a complex process that requires considerably more knowledge and skill than is needed to simply follow a program manual. 2 Systems factors pertaining to co-ordination among different agencies and community readiness to adopt and maintain new strategies need to be considered. 3 Communities must have sufficient financial, technical and personnel resources. 4 Local clienteles and other circumstances may pose unique difficulties. Technology Transfer One approach to building such community capacity is technology transfer (Backer, David, & Soucy, 1995), which emphasizes training and technical assistance. However, these strategies alone have been only partly successful. Chinman, Hannah, Wandersman et al. (2005) reviewed a variety of training programs in substance abuse prevention, for example, and concluded that while such programs were helpful, their content was not always appropriate to the specific local context and there were often local barriers to incorporating the information into practice. Alternatively, having an intermediate set of professionals provide direct hands-on technical assistance similarly had limited effectiveness (Chinman, Hannah, Wandersman et al., 2005). Such technical assistance, even when provided without cost, was not always welcomed at the local level; some minimal level of community capacity was required to make full use of such assistance, and community organizations seemed better able to utilize some forms of assistance (e.g., planning, implementation, organizational maintenance) than others (e.g., evaluation procedures, data analysis). 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assistance in one area – substance abuse prevention – and their generality to other areas is unknown, many funders and service professionals believe that training and technical assistance as typically provided may be necessary but are not often sufficient to improve or create service programs. Toward Effective Community Processes The ability of local communities to adopt, create and implement effective services often requires a collaborative community process (Green, 2001), not simply technology transfer or a ready-made program to be replicated. Chinman, Hannah, Wandersman et al. (2005) suggest that this process must have genuine community involvement and commitment: the community must possess skills in a variety of domains; resources must be identified, acquired, and managed; and there must be a collective sense of community efficacy or power to manage the skills and resources and direct them toward successful outcomes. More specifically, such a community process requires: 1 Collaboration among a variety of stakeholders; 2 A strategy for designing services that fit local needs and circumstances; 3 Effective implementation and operational strategies; 4 Appropriate monitoring and evaluation; and 5 A plan to sustain the effectiveness and financing of services. We consider each of these elements below. Collaboration While a specific service may be adopted or created by a single agency, many contemporary services are multi-sited or comprehensive, requiring collaboration across agencies and involving policy-makers, funders, academics, evaluators, the media and members of the intended clientele in their planning, implementation and operation. Such diverse collaborations have the potential benefit of converging the complementary expertise of such individuals to produce a better and more comprehensive service and to create involvement (i.e., “buy in”) of major participants and groups that are necessary for the successful funding, roll-out, operation and sustainability of the service. Conversely, collaborations may take more time, require skilled leadership and sometimes involve individuals who obstruct progress for a variety of personal and professional reasons. Membership The members of a collaboration are typically stakeholders in the service to be created, that is, individuals who have an interest in the project, something to gain or lose as a function of its success or failure, and can contribute in some manner to its creation, implementation, operation and sustainability. Ideally, every member of the collaboration should be necessary to its success, and no smaller subset of the collaborators would be sufficient to carry out the project. Even collaborators whose contribution occurs late in the process should nevertheless be present from the beginning so they are knowledgeable about and involved in the project. Members of a community planning and implementation collaboration could include: • Relevant service professionals representing key agencies to be involved in the future service; • Policy-makers and funders, who have administrative responsibility for the type of proposed service, who will or could help to fund it, and who will be necessary to overcome local political barriers the service may face; • Academics with the research and professional knowledge behind the guidelines, who can be used to steer the creation of the service; • Evaluators, who will work with service providers to monitor and evaluate the implementation, service delivery process and outcomes for participants; • Potential participants in the service, who can provide the perspective of the client in designing a user-friendly service; and • Others who may be necessary for success (e.g., the media if public awareness is needed, celebrities if a public spokesperson would be helpful, business leaders if the service is to be integrated with or benefit private enterprise, and community leaders if the service will influence the wider community or will need community support to operate). Members should be selected for their ability to fulfill their specific roles in the project and for their personal ability to function in a collaborative group. Collaborations often leave individual members with less control over the process and product than they are accustomed to exercising and require them to make compromises with cherished values and principles (e.g., evaluators not having random assignment). They should be committed to attend every meeting, represent their organization, bring its resources to the project, listen and understand divergent points of view, communicate their perspective honestly and accept a group decision even if it conflicts with their own self-interest. Models of University–Community Relations In the past, academics and program evaluators, generally from a local college or university, have often not been part of this process, but in the era of evidence-based practices and increased emphasis on evaluation, they have become more crucial to the planning and implementation processes. While each member of the collaboration is likely to have his or her own professional values and attitudes, those of academics and program evaluators may be less similar to, even at odds with, the values and attitudes of other collaborators (Groark & McCall, 1993, 1996, 2005; Mattessich & Monsey, 1992; McCall, Green, Strauss, & Groark, 1997; Shonkoff, 2000). Historically, academics have worked with community professionals in different ways (Denner, Cooper, Lopez, & Dunbar, 1999). Often, academics simply serve as expert consultants. In this case, academics provide their knowledge in a rather unidirectional fashion. Sometimes, the community sets the agenda. In this case, the community tends to pick the problem, the methods and the services, selectively taking what information the academic provides that is useful to its purposes. The COMMUNITY-BASED INTERVENTIONS AND SERVICES 979 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 979

result is highly relevant to the community and thereby ecologically valid, but it tends to marginalize the role of evidence, monitoring and evaluation, making it less scientifically valid and difficult to replicate. A better approach is the true collaboration among stakeholders, in which university and community members develop the project together, blending evidence and program evaluation with practitioner expertise and the resources and limits of the community. The interventions are developed in the community context with the community using its own resources, but research and evaluation priorities are selected collaboratively. In addition, consideration is given to broader policies and processes so that findings are relevant for general theory development. This model also requires the inclusion of various disciplines and diverse groups, thereby being more relevant to the ordinary lives of a wide variety of clientele. One example of this collaborative approach is practiced by the University of Pittsburgh Office of Child Development (OCD; Groark & McCall, 1993, 1996, 2005; McCall, Green, Strauss et al., 1997; McCall, Green, Groark et al., 1999; McCall, Groark, & Nelkin, 2004). OCD employs: 1 Academic specialists in various aspects of child development who can bring research knowledge to the process; 2 Service professionals who are experienced in creating, implementing and managing innovative service demonstrations in collaboration with community agencies; 3 Program evaluation specialists who train service providers in monitoring and evaluation and who conduct evaluations on community-based programs in a collaborative and participatory manner with the service agency; and 4 Specialists experienced in policy and governmental service administration who work with policy-makers to create better policies and administrative services for children and families. Some or all of these types of OCD staff may work on a specific project in collaboration with other academics, community service agencies and professionals, and administrators and policy-makers; each component of this team influences the others. The essential ingredient, however, is an attitude that emphasizes partnership – sharing of responsibility, power, control and credit among all stakeholders, who collaborate to achieve a common goal. Characteristics of Successful Collaborations Successful collaborations tend to have certain characteristics in common (Butterfoss, Goodman, & Wandersman, 1996; Grobe, Curnan, Melchior et al., 1993; Kegerise, 1999; Mattessich & Monsey, 1992; Wandersman & Goodman, 1993). First, they have a common purpose. Each participant must value the main common purpose of the collaboration, which focuses each participant on a single set of criteria, and the mutual dependency helps to keep the coalition together and produce mutual respect. The common purpose must be articulated early and clearly so that it becomes the touchstone that helps members focus on the reason for the collaboration during debates. Therefore, it is helpful to write down the common purpose in the manner of a vision or mission statement which can be reviewed periodically to keep members operating in the same direction and also to constitute criteria for deciding whether each major decision contributes to accomplishing the stated purpose. Further, the collaboration should establish common, clear, achievable and specific goals; a plan with concrete and realistic steps; and a timetable for achieving them. This plan becomes the roadmap for all future activities, and a monitoring method that helps institute controls on priorities for each partner by specifying who is responsible for which tasks and how they will be measured. Strong, balanced, sensitive leadership is required. Although all participants should share in the rights, responsibilities and credit for the collaboration’s activities and products, strong leadership is required to make the process work. The leader may be a local participant or an independent facilitator, but he or she needs to have or earn the respect and trust of all group members. The ideal leader needs to be sensitive and fair, hearing all sides of a debate, but at the same time be neither dictatorial nor benign. The leader must structure the process and move it along at an appropriate pace without restricting participation by each member and by encouraging participation by all. Further, the leader needs to deal in a balanced and fair manner with disagreements and conflicts within the group while respecting the diverse contribution of each participant. Few people have all these characteristics, yet such leadership is crucial to an effective collaboration (Groark & McCall, 2005; McCall, Green, Strauss et al., 1997). Program Development and Design Effective program development requires establishing and operating a successful collaboration, preparing and planning, and then conducting a logic model program development process. Many of the principles described in this section appear obvious or common sense, but in our experience they are not always followed. Operating Successful Collaborations Successful collaborations tend to operate in a specific way (Butterfoss, Goodman, & Wandersman, 1996; Groark & McCall, 2005; Grobe, Curnan, Melchior et al., 1993; Kegerise, 1999; Mattessich & Monsey, 1992; Wandersman & Goodman, 1993). They have regular meetings with required attendance, and they begin by identifying the values and perspectives of each participant and what they bring to the collaboration. The skills, resources, roles and responsibilities of each participant should be identified, as well as major resources and time commitments that will be needed. If the collaboration is large and complex, written policies or even bylaws and procedures should be considered. The group should decide how decisions will be made, whether votes will be taken and how ties will be resolved. Ultimately, the collaboration should develop a “business plan” that specifies potential resources and expenses as well as goals, procedures, responsibilities, and legislative, legal and administrative needs. Finally, the collaboration itself may need to be monitored and CHAPTER 60 980 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 980

periodically reviewed. Occasionally, procedures need to be modified, and sometimes even the leadership needs to change. Planning and Preparation An initial step in preparing to develop a new service program is to understand the current situation; namely, the nature of the intended participant group and its cultural and social values, political opportunities and constraints, and the history of the problem and previous attempts to remediate it (for service planning in general see chapter 71). For example, in the case of an intervention project to improve caregiving in the orphanages of St. Petersburg, Russian Federation Groark, Muhamedrahimov, Palmov, Nikiforova, & McCall, 2005; Muhamedrahimov, Palmov, Nikiforova, Groark, & McCall, 2004), this meant understanding the following: 1 How caregiving was currently provided, the rules and regulations governing the orphanage; 2 Why various practices exist (e.g., caregivers do not get socioemotionally close to children to avoid the pain of separation later); 3 That caregivers work 24-h shifts to minimize transportation expenses and to have 3 days off to be with their own children or work in other jobs; and 4 There is a long tradition of adult-directed teaching. Next, learn what has been tried before, both locally and nationally. This step includes a review of the service literature, which may focus on the guidelines offered by a consensus group or brief reviews provided by local scholars plus knowledge of what has been tried specifically in the target locale. In the case of the orphanage project, there were few precedents, but there was a literature on early socioemotional development (e.g., attachment) and on the components of early childhood care and education programs that correlate with children’s development. A needs assessment, conducted community-wide or specific to a particular location, agency, or program is very useful. Community needs assessments can be conducted by an independent organization with the assistance of a diverse committee of practice professionals, funders, policy-makers, scholars and service participants, or it could be the collaborative community group conducting this program development process. The needs assessment consists of reviewing the scholarly literature on the issue (e.g., after-school programming, adolescent crime prevention, comprehensive family services); determining the frequency and severity of the problems to be prevented or remediated in the target area; and specifying the short- and long-term consequences to individuals and costs to society if nothing is done or current services were continued, the nature and extent of existing services, the geographic distribution of problems versus services, available personnel and their training and preparation, and resources available or needed. Creating the Planning Document The program planning process should produce a written planning document. This is sometimes a grant proposal in which a government or private funder has issued a request for proposals that specifies the target population, goals and services it wants to fund. Alternatively, the diverse community-collaborative group may plan the services with or without a set of guidelines or request for proposals. Several structured formats are available to facilitate program development. For example, the Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis (Kearns, 1992) provides an organized approach for general strategic planning, perhaps for an entire service agency. More specific to program development is the logic model. While research on the effectiveness of the logic model approach is limited, those who use it recommend it and it is widely advocated. For example, the Kellogg Foundation (1998, 2000) provided a detailed guide for conducting a generic logic model that could be applied to any service need. Benson (1997) presented an asset-based needs assessment pertaining to adolescents, and Catalano and Hawkins (1996) described risk and protective factors and suggestions for program development for preventing adolescent antisocial behavior. More recently, the logic model concept has been packaged into the Getting to Outcomes (GTO) process (Wandersman, Imm, Chinman, & Kaftarian, 1999, 2000), which is available in several formats pertinent to particular problems (Chinman, Imm, & Wandersman, 2004; Fisher, Imm, Chinman, & Wandersman, 2006; http://www.RAND.org/ publications/TR/TR101). The GTO approach will soon be available in an interactive web-based technology system, iGTO. Logic Model Approach The logic model approach consists of a series of questions that provide a structure and logic to the program planning process. The logic model process is common sense, but not commonly conducted. It forces the collaborative to think clearly, specifically and realistically about needs, goals, participants, services, rationale, measures of process and outcome, and resources, and to make sure these components are aligned. Proponents of the logic model approach argue that it produces a clear integrated logical program that is more likely to be effective plus an evaluation that is more likely to be relevant and to contribute to program improvement and understanding how the program works (Armstrong & Barsion, 2006; Axford, Berry, & Little, 2006; W. K. Kellogg Foundation, 1998, 2000). Whereas the specific questions vary from one approach to another, generally logic models address the following questions (Groark & McCall, 2005). What is the Ultimate Goal of the Services? Specifically, what is the problem or need and what should be the situation if the new intervention or services were completely successful? This is the “blue sky question” – in the ideal case, what should the intervention or services accomplish? In the case of the orphanage project, the ultimate goal was that children should develop at typical levels in all domains. What Measures Would Indicate that this Long-term Goal has been Achieved? Often, the goal stated is phrased in very general terms (e.g., COMMUNITY-BASED INTERVENTIONS AND SERVICES 981 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 981

children develop typically) so in this step that goal must be specified in measurable terms. For example, the measurable long-term goal for the orphanage children was for them to reach heights, weights, and developmental scores (across personal, social, communication and cognition dimensions) comparable to non-orphanage parent-reared children. Care must be taken to ensure that the indices of success indeed reflect the long-term goal and are reasonable and potentially attainable. Some policy-makers and funders prefer aggressive goals, such as “cutting the teenage pregnancy rate by 50%.” The goal is worthwhile, but likely not attainable; should a program that cuts the rate by 25% be deemed a failure relative to such a lofty goal? Instead, determine both the minimum level of improvement that would be considered “success” as well as the maximum level likely to be attained. Thus, a goal of reducing the rate by 20–40% might be appropriate (no one will be upset if the program achieves a 45% reduction). The goal should also be well-specified – a reduction of 20–40% relative to what (e.g., current levels, a comparison group), in what length of time (e.g., 2 years, 5 years), for what ages of adolescents? Measuring instruments should also be specified when different assessment tools, reflecting different emphases, are available. Who are the Targeted Participants? Who do you want to help, how will they be identified, what are their characteristics and how many are there? In the orphanage project the participants were all caregivers and children in three orphanages, but in the case of Sure Start the services would be located in low-income neighborhoods and serve anyone living there. Should outreach efforts be made to recruit families, who should be employed to do this and how should it be done? For instance, should workers be hired from the neighborhood to recruit families because target families can relate to them, or would that cross the line of privacy? What Services Can be Provided that will Produce the Long-term Goal? First, determine a promising theory of change (Chen & Rossi, 1983, 1987), then identify services that follow from the theory that have been tried by others and found to be successful. This is the step in which theory, research evidence and best practice guidelines enter the process. What are the elements and characteristics of successful services, and what modifications need to be made to fit the local clientele and social and political circumstances? This step should have at least two major characteristics: first, there needs to be a clear rationale for why the proposed services should produce the intended outcome (i.e., theory of change), and, second, there should be some level of evidence (e.g., Table 60.1) to justify the potential effectiveness of the services, service components and characteristics. What frequency and intensity of services are sufficient to produce the intended benefits? Do the services match the risk level of participants? In the orphanage project, attachment theory provided a theoretical rationale for reducing the number of caregivers, making them more consistent in the lives of children and having them behave in a warm, caring, sensitive and responsive manner. Also, there was an empirical rationale for smaller group size, better caregiver : child ratios, age and disability integration, and child-directed caregiver–child interactions. Together, these changes should promote all aspects of children’s development. How Will You Know that the Intended Services are Actually Delivered and Match the Plan in Character and Intensity? This step requires a plan to monitor the delivery of services, not just how many participants receive which services but whether the nature and extent of the services are consistent with the plan (i.e., “program fidelity”). Perhaps a management information system (MIS) needs to be developed. In the case of the CCDP, did the case manager work with the family to identify their strengths, did the family identify their needs and put them into a priority sequence, did the case manager develop a relationship of trust and support with the family and did the family participate in services relevant to the family’s goals? What are the Short-term Goals and Measures? What should be the first beneficial outcomes of such services, and is there evidence that achieving the short-term outcomes predicts achieving the long-term outcomes? In the orphanage project, did HOME Inventory scores of caregivers’ behavior on the wards increase, because there is evidence that higher scores are related to better developmental outcomes for children? Short-term goals should be laddered from goals that are obvious and easily attained to goals that are more difficult to achieve, so that the project will have some success. What is an Appropriate Timeline Both to Deliver Services and to Expect Outcomes? It is important to be realistic in planning the timeline for both implementation and when short- and long-term outcomes are likely to be achieved. Sometimes, a neighborhood is not ready for a needed service, and this should be anticipated. For example, a funder may suggest establishing a family support center in a particular low-income community. To do so, there must be community “will” for such a center, a recognized and respected leader, an agency willing to administer the program and other resources. If not, program developers may need a year or more to hold town meetings to assess the community’s true interest and capacity and provide recreational services to gain trust. What is a Reasonable Budget to Deliver These Services and Measure Their Implementation and Effectiveness? This step begins with assigning costs to all of the elements in the previous steps, determining if the total budget is feasible and, if not, revisiting each of the above steps and making modifications to meet a specified budget. Ultimately, the group needs to decide whether a program that is likely to be effective can be operated for the amount of money available. This is CHAPTER 60 982 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 982

also one of several reasons why it is helpful to have policymakers and funders at the table during this planning process. Implementation Implementation is as crucial a process to successful services as program development, but it is often forgotten and rarely studied. Further, implementing new services in new communities may require months or even years to build trust among potential participants, and several cohorts of participants and much trial and error may transpire before even experienced teams of providers refine procedures sufficiently to produce benefits in participants (Fixsen, Naoom, Blase et al., 2005). Community Collaborative The same community collaborative that designs the program may also be used to oversee its implementation. Such a committee should have the characteristics of, and operate according to the principles for, collaborations described above, and implementation should strive to have the characteristics of successful programs given in Table 60.2. Characteristics of Good Implementation Crucial to good implementation is to have a strong leader who relates to the diverse organizing committee plus a welleducated, trained and experienced staff who are supervised in a supportive and encouraging manner on a regular basis. Studies show that training alone is relatively ineffective unless it is accompanied by such supervision (Morrow, Townsend, & Pickering, 1991). Management needs to involve the staff in understanding the purpose of the services, their roles and the intended outcomes, perhaps by involving some of them in the logic model process described above or reviewing that process so that they can contribute modifications in the design of the services. If staff collect data, they need to understand why it is necessary and how they can use the data to guide and improve their services. Staff also need structural supports, including reasonable work loads and the availability of resources such as technology, consultants and training necessary to do their jobs. Studies also show that teacher education and training tend not to be related to positive outcomes for children in early care and education settings, for example, unless group size and teacher : child ratios are small enough so that teachers can exercise the best practices of their training (Love, Schochet, & Meckstroth, 1996). A management information system may be needed for large and multi-sited projects that systematizes in a uniform manner participant information, services delivered, and short- and longterm outcome measures. Directors and supervisors need to monitor such information to determine that the services are being delivered according to plan, including whether the participants are those who were originally targeted; whether services are delivered in a timely and consistent way and at an intensity or frequency sufficient to produce benefits; and whether shortterm goals are being achieved. Mid-course corrections may be necessary. For example, one program aimed at providing services and support to drug and alcohol abusing adolescent mothers found after 2 years of operation that the average age of the mothers was 26 years, not the adolescents the program was designed to target. Staff reported that drug and alcohol abusing adolescents did not perceive that they had a problem, because drug and alcohol use and abuse were rampant in their peer group; it seemed to take nearly 10 years for such mothers to recognize that they had a problem and to seek help. The project could change its target group to older mothers who were motivated to use the services and/or it could make greater efforts to recruit adolescents. It was decided to do both, using the older mothers to convince the adolescents that they needed help and enroll them in the service. Evaluation Most large comprehensive multi-sited services have a required monitoring and evaluation program. The funder may contract with a central and independent evaluation team, which may prescribe and conduct monitoring and evaluation for all sites, such as in Sure Start and CCDP. Smaller programs should also have a monitoring and evaluation plan, and select appropriate indices of participants, services and outcomes during the logic model process. Program evaluation is a specialized skill, and relatively few service professionals have the appropriate training. Furthermore, simply providing local service professionals with technical assistance in evaluation does not work very well (Chinman, Hannah, Wandersman et al., 2005). Consequently, large-scale and multi-sited service projects often have a central team of independent evaluators who should be part of the diverse community planning and implementation group and contribute to the program guidelines as well as collaboratively design the monitoring and evaluation plan, specify measurements, conduct the assessments, analyze the data, and report on the process and outcome effectiveness of the project. Alternatively, some communities have local evaluation teams that work with local agencies to design and conduct local evaluations, even the evaluation of the local site of a multi-sited national intervention, such as in Early Head Start (McCall, Green, Strauss et al., 1997; McCall, Green, Groark et al., 1999). Modern service programs, especially services that are tailored to client needs and characteristics at both the site and individual participant levels, pose several issues for traditional methods of evaluation. We consider a few such issues below. Independent Versus Participant/Collaborative Evaluation Historically, innovative services were often created by a university scholar who both implemented the intervention and evaluated its effectiveness. Conversely, funders feel it is a conflict of interest for the people who create and implement a service to evaluate it, so they prefer an independent evaluation team. In the past, independent evaluators have sometimes been distant from the program and the services staff, have “done the evaluation to the project,” and sometimes issued reports that policy-makers and practitioners regarded as having missed the COMMUNITY-BASED INTERVENTIONS AND SERVICES 983 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 983

point of the service program. A modern and compromise strategy is participatory or empowerment evaluation (Fetterman, 1993; Fetterman, Kaftarian, & Wandersman, 1996; McCall, Green, Strauss et al., 1997; McCall, Green, Groark et al., 1999), in which evaluators and service professionals work together from the beginning of program development to monitor and evaluate the process and outcome of the service program. Participatory evaluation is more likely to produce useful results, because the measures and design are determined collaboratively with service professionals. Central Versus Decentralized Evaluations Large multi-sited service programs have often had a single evaluation team that designs and collects the data for all sites (e.g., Sure Start, CCDP). Such an approach has the benefit of a uniform evaluation of all sites, and it works best when the service program is prescribed in great detail and expected to be implemented in a uniform manner at each site. However, many modern service programs permit flexibility and modification to fit local circumstances, and even programs intended to be uniform across sites nevertheless are often implemented in different ways at different sites (Gilliam, Ripple, Zigler et al., 2000; McCall, Larsen, & Ingram, 2003). A compromise strategy was used by the Early Head Start Research Consortium, which had a common core of service themes and a central evaluator, but each site had local evaluators who conducted the core assessments plus measures more pertinent to their local program emphases (Administration for Children and Families, 2002; Love Kisker, Ross et al., 2005). The Rush to Evaluate Outcomes Understandably, funders and policy-makers are anxious to determine the effectiveness of programs they fund, and often there is an emphasis on assessing outcomes (i.e., benefits to participants) in the first cohort of participants. But the first “outcome” of any program should be that the services were implemented as planned for the targeted participants with the frequency and intensity that are likely to produce benefits. Until the services are delivered with such “fidelity,” it is unreasonable to expect outcome benefits to participants; and it may well take two or three cohorts of participants before the program operates smoothly and according to plan. This fact prompted Campbell (1987), a patriarch of program evaluation, to admonish: “Evaluate no program before it’s proud.” Overemphasis on Gold Standard Methodology Scholars, policy-makers, funders and practice professionals have come to value the randomized clinical trial as the gold standard of applied research and program evaluation, so much so that often entire literatures using other methodological approaches are completely dismissed (e.g., as in review articles that only include randomized trials). While in some fields (e.g., education) there has been an avoidance of randomized trials, and some scholars (Cook, 2002) have called for greater use of this gold standard, in other fields randomized trials are overemphasized (McCall & Green, 2004). While acknowledging the potential benefits of random assignment, McCall and Green (2004) argue that randomized trials work best in a double-blind design in which participants do not know which treatment they are being given and have relatively little influence over the success of the treatment (e.g., drug versus placebo studies). However, in behavioral interventions, participants are almost never blind to which treatment group they have been assigned, and participants’ values and perceptions of the treatment can have substantial influence on how effective the treatment is for them. As a result, some participants display “reactive disappointment” to being in the control group and acquire the treatment services for themselves, shrinking the difference between the “treatment” and the “control/comparison” groups. For example, in one evaluation of the SDP (Millsap, Chase, Obeidallah et al., 2000, reported by Datta, 2003) in which schools were assigned to treatment versus control conditions, several of the control schools implemented some or all of the Comer principles on their own. The result was that there was minimum difference between treatment and control schools in the amount of SDP “treatment” and in outcomes. However, the extent to which schools implemented the SDP principles within the control group was related to outcome. A gold standard purist would discount this finding because the beneficial outcomes were confounded with school motivation. Technically true, but a policy-maker or superintendent might be sufficiently persuaded to adopt the SDP strategy if it could be effectively implemented. Further, after a demonstration project is completed successfully and services are offered routinely, they are never randomly assigned. So “participant bias” will always be in effect; from a practical standpoint, the “biased” demonstration sample is the group from which generalizations to future clients should be made (of course, one wants to know if such people would improve without a service program). Also, such “bias” might be critical for program success. For example, if divorcing couples are randomly assigned to divorce mediation versus court-ordered settlements, it is possible that some couples cannot co-operate sufficiently for mediation to work whereas other couples would be dissatisfied with a divorce arrangement that was prescribed for them by a judge. The result of a strictly randomized trial might be no difference in parental satisfaction and adjustment of children between these two approaches. However, if couples were allowed to choose which approach they wanted, both strategies might be shown to be effective for those who choose them, more effective than for those who are randomly assigned to each approach. Notice that this is a case in which the randomized design produced a low effect size, contrary to those who sometimes claim that randomized designs provide a maximum effect size. Consequently, McCall and Green (2004) advocated a greater balance of and respect for different methodological approaches which provide different kinds of information about an intervention or service. Results from a comprehensive set of approaches are more likely to provide a more complete and better understanding of the effectiveness of that service. Different research CHAPTER 60 984 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 984

designs and statistical strategies are described elsewhere (McCall & Green, 2004; Rossi, Lipsey, & Freeman, 2004). Intent-to-Treat Analyses Another gold standard approach to program evaluation is to conduct intent-to-treat analyses in which the outcomes are assessed on all participants who were assigned to the treatment conditions regardless of whether they actually experienced them, such as in Sure Start. This approach preserves the random assignment feature; it “avoids” the problem of selective dropouts, which is common among the high-risk populations that many services target, by including the dropouts as if they were treated participants. This strategy works well when the treatment program is uniformly delivered to all participants and the number of actual dropouts is small. However, including dropouts inflates the error within the treatment but not the control condition; and as the number of dropouts and partially treated participants increases, detecting significant differences between treatment and comparison groups becomes less likely. Further, it is logically absurd to pretend that dropouts received the treatment when they did not. In this case, it seems reasonable to conduct both the intentto-treat analysis as well as an analysis that is restricted to fully treated subjects (perhaps limiting the control subjects to those who were similar to the fully treated participants through propensity score analysis; Rosenbaum & Rubin, 1983). The intent-to-treat strategy also seems limited if not inappropriate when the treatment itself is different from participant to participant. In the CCDP, families chose their goals, and only approximately 15% of the treatment families chose more education and 10% of the control families decided on their own to undertake more education. Yet the evaluation asked the percentage of all participants in both treatment and control groups who attained more education. Not surprisingly, few did (i.e., certainly less than 15–10%), and there was a very small and insignificant difference in the rates between the two groups (McCall, Ryan, & Plemons, 2003; St. Pierre, Layzer, Goodson, & Bernstein, 1994, 1997a,b). Clearly, evaluation analyses must consider different goals and services delivered within the treatment and control groups with designs and analyses that consider that modern services are often individualized (McCall & Green, 2004). Sustainability and Replication Sustainability refers to at least two outcomes: 1 Maintaining the quality of services and benefit to participants over time; and 2 Keeping the service funded after the initial demonstration grant expires. Replication refers to attempts to reproduce the program in new sites with similar populations with the intent of replicating the original benefits and outcomes. Sustaining Program Benefits It is not uncommon for there to be unusual passion, commitment and dedication among program directors and staff during the implementation of a new service program, and such commitment often wanes over subsequent years. Also, staff turnover and changes in the participant group may also lessen the effectiveness of the services over time. An MIS and a good plan for monitoring participants and services can provide feedback to directors regarding changes in the characteristics of participants and the manner and intensity with which services are being delivered. The director and supervisory staff need to provide continuous supervision and monitoring, even of highly experienced staff, to maintain standards and program effectiveness. Supervision must be formative and reflective (Johnson & Tittnich, 2004) so that continuing improvements are made in services with staff input and enthusiasm for the program is maintained. It also helps to design the original demonstration in such a way that the intervention can be maintained. Building intellectual and skill capacity in the community is essential in sustaining the quality of services. For example, the St. Petersburg (Russia) orphanage project (Groark, Muhamedrahimov, Palmov et al., 2005; Muhamedrahimov, Palmov, Nikiforova et al., 2004) used a train-the-trainer approach in which a written curriculum was produced and a specialist trained the professionals in each orphanage. Those professionals were available to train new caregivers who replaced those who left and thus keep the level of performance high in the orphanage over time. Sustaining Funding Many interventions and services are initiated with a demonstration project, which is often funded at relatively generous levels. However, once the demonstration is completed, it can be much more difficult to obtain funding to continue the program, even when the evaluation has clearly demonstrated program benefits to participants. Also, when governments assume funding after demonstration programs, it is often at substantially lower levels but with the same expectations for success – it is the government’s penchant to expect champagne benefits on a beer budget. Programs that must be trimmed to fit smaller budgets need to analyze and break down the program into its components, including personnel, participants, the types and extent of services provided, as well as the costs involved. The research literature on this type of service and characteristics of successful programs should be used as the criteria for determining which aspects of the service are likely to be crucial and which aspects appear less important and are likely candidates for trimming. Sometimes, the number of participants may need to be reduced to maintain program quality within the available budget. This is always a very difficult choice for service professionals, but it seems obvious that it is better to be effective with fewer participants than to be ineffective with many. One strategy in sustaining programs after their initial demonstration is to invite potential long-term funders (e.g., the director of children and youth services for the geographical area in which the service program resides) to be on the community collaborative committee that designs, implements and COMMUNITY-BASED INTERVENTIONS AND SERVICES 985 9781405145497_4_060.qxd 29/03/2008 02:57 PM Page 985

oversees the management of the demonstration program. By involving such funders at the beginning, they are more likely to be committed and to feel a sense of ownership of the program after the initial demonstration and therefore more likely to provide funds to sustain it. The results of a successful evaluation should be disseminated widely and specifically to potential funders. Further, results need to be packaged differently for different audiences, from detailed technical reports for scholarly journals to one-page summaries for policy-makers. It is also helpful to have cultivated one or more “champions,” who may be policy-makers, funders, influential citizens, celebrities or media professionals. They also should be part of the community collaborative that designs and oversees the project from the beginning, so they are fully informed and feel partial ownership of the service. Eventually, their job is to “sell” the program to policy-makers, funders and the general public. Sometimes, successful participants can be the most powerful advocates for sustaining a service. Consider a drug and alcohol abusing mother of two young children who is assisted by a family support program to become substance free, develop marketable skills, become employed, and whose children wind up in honors classes. If she is willing to tell her story publicly, she can do more to sell a program than all the carefully collected evaluation results. It is difficult for legislators to see such a success story and then vote against funds to offer the same opportunities to others. Replication Replicating a program in a new locale with new staff and clientele requires the same planning process and ingredients for successful implementation as for the original (i.e., leadership, committed staff, perceived need for change, program development with the logic model process). Does the new director have sufficient commitment, energy and confidence to “pull this off”? Is the staff capable and receptive to change? Are the local social, cultural and economic conditions conducive to change? If not, these elements need to be resolved before or during the program planning process. Conclusions There is no “silver bullet” or step-by-step manual that will guarantee that community-based interventions services will be successful. However, there are principles and strategies suggested by research that help to create highly effective programs. They start with a thorough process of planning that customizes the service and its delivery to the clientele and context. It includes developing a solid collaboration of diverse but relevant stakeholders who become knowledgeable loyal partners. Together these stakeholders develop a common purpose, goals, and clearly agreed-upon rules, and are led by a fair, balanced and respected leader. 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