MENTAL HEALTH AND OTHER SERVICE USE BY YOUNG CHILDREN WITH FETAL ALCOHOL SPECTRUM DISORDER Rosanne MT Mills1, John D McLennan2, Michelle M Caza1 1 Department of Community Health Sciences, University of Calgary, 2Departments of Community Health Sciences and Psychiatry, University of Calgary, Alberta ABSTRACT Background Children with fetal alcohol spectrum disorder (FASD) are at high risk for developing mental health problems. Early involvement of mental health providers may ameliorate mental health outcomes. Little is known of the extent to which young children with FASD access mental health or other services. Objective To determine the use of mental health providers and other services by young children with FASD and to compare these with children with attention-deficit/hyperactivity disorder (ADHD). Methods Self-report, anonymous questionnaires were mailed to all caregivers of children under the age of 7 years who had their first contact with one of two large speciality facilities for children with special needs in Edmonton, Canada between October 1, 2000 and October 1, 2002. Data on children reported as having FASD (n=14) and ADHD (n=15) were extracted from all the respondents. Questionnaire items included professionals consulted, services received, referral information, and concerns about services. Results Children with FASD had substantial variation in the types and combinations of providers and services and tended to see fewer mental health providers than children with ADHD. This may have been partly a function of less mental health referrals from family doctors and paediatricians. The complex referral and service utilization patterns of three children are depicted. Conclusions Children with FASD at risk for or demonstrating mental health problems may not be receiving adequate mental health services in a timely manner. Further research is needed to better understand the type and quality of mental health and other services received by this population. P revalence rates for fetal alcohol spectrum disorder (FASD) range from 0.331 to 1902 per 1,000, with an estimated rate of 9 per 1000 proposed for Canada.3 It is the leading known cause of mental retardation in both Canada and the United States.3,4 Although not all children with FASD have mental retardation, many whose IQ scores fall within the normal range may still exhibit deficits in learning, executive functioning and/or socialization.4-8 In addition, children with FASD often have one or more mental health problems or disorders.6 In a sample of North Dakota children under the age of four, 81% of children diagnosed with FASD and 68% of children diagnosed with partial FASD presented with at least one comorbid mental disorder.4 Children from five to nine years of age from this same population had comorbidity rates of 96% and 93% respectively. As children age, the prevalence of mental health problems may increase. In a longitudinal study of German children with FASD, Steinhausen, Willms and Spohr9 demonstrated that the prevalence of language disorders, sleep disorders, abnormal habits, and emotional disorders increased between the preschool years and middle childhood, while the prevalence of enuresis and eating disorders diminished. Mental health problem rates of over 90% have been reported in small samples of adults with FASD.10,11 JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 1 Mental health and other service use by young children with fetal alcohol spectrum disorder Attention-deficit hyperactivity disorder (ADHD) is reported to be the most common mental health problem among children with FASD.6 In Burd and colleagues’ North Dakota study4, the prevalence of ADHD was over 70% in all age groups. Other problems among preschool children with FASD may include attachment disorders, behavioural problems, difficulty with transitions and rules, feeding and sleeping problems, and mood disorders. Older children may have additional problems with depression, aggression, and self-image.4,6 Adolescents and adults with FASD may have elevated rates of alcohol or drug abuse and other mental health difficulties, including depression.10,11 While certain mental health problems, such as impairments in cognition and attention, may be linked directly with the underlying pathophysiology of FASD, others may be secondary as a result of exposure to psychosocial risk factors. In a group of 6 to 12 year olds with FASD, 61% had experienced physical abuse, sexual abuse, or domestic violence.12 Disruptions in home life are also common. Parents’ substance abuse often leads to the placement in one or more foster-care homes.13,14 In Saskatchewan, 72% of people with FASD had resided in foster care for part of their lives.15 Given the complexity of the medical problems and social environments faced by children with FASD, the attention of a multidisciplinary team is recommended for the assessment and care of their conditions.6,16,17 Early intervention and effective management of existing mental health problems may improve long-term outcomes. Although the effectiveness of specific mental health interventions for children with FASD is unknown, at least some of the interventions for children’s mental health disorders may be helpful to children with FASD.8,14,17 For example, psychological testing may help educators and parents adopt expectations and learning strategies appropriate for the individual’s strengths and weaknesses.6,18 Cognitive-behavioural training and behavioural family therapy have been found to be successful in some children with mental retardation.14 In addition, medication may be helpful in reducing symptoms of ADHD.18,19 Despite the extensive mental health difficulties experienced by children with FASD, it 2 is hypothesized that these children are primarily managed in the traditional medical system with efforts more focussed on physical health and learning concerns.4 Little research has been conducted to discern the actual services received by these children. There have been a small number of reports of hospitalization which have found higher rates and longer periods of hospitalization for children with FASD.20,21 Although this data suggests that children with FASD are more often severely ill and/or injured than children without disabilities, it does not provide a good indicator of the use of the array of human services that children with FASD may receive. Several studies have reported on the use of special education among children with FASD.12,13,15,22 For example, educational aid use was reported by 42% and 67% of children in two different samples.12,13 The studies on this topic often include individuals from a broad range of ages, making it difficult to assess whether support through schools is being received in the early years. Although the existing studies are important contributions to a sparse field of research, few explore the mental health care or the combination of services received by children with FASD. An exception is a small study of foster and adoptive families of children with FASD in which seven out of fifteen families received behaviour management consultants for their child.23 In addition, some of these families received respite, family therapy, or individual counselling. The following preliminary inquiry identifies service utilization patterns of young children with FASD by considering a broad array of services including mental health. Such information is crucial for informing strategic efforts aimed at enhancing service delivery. The objectives of this study are: 1. to determine mental health and other professional consultation, service use, and referral patterns among children with FASD; and, 2. to compare these patterns with children with ADHD. METHODS Data from this study were extracted from a larger study investigating the integration of health and JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 Mental health and other service use by young children with fetal alcohol spectrum disorder social services for young children with special needs and their families. Details regarding the full study are available from http://www.offordcentre.com/integration. Setting Data for this paper were obtained from participants recruited from two specialty care centres in Edmonton, Alberta, Canada: The Preschool Assessment Service clinic at Glenrose Rehabilitation Hospital (GRH), a tertiary care rehabilitation center serving all ages, and the Infant and Preschool Program at Child and Adolescent Services Association (CASA), a community-based provider of children’s mental health services. Both GRH and CASA serve a catchment area that includes Edmonton and the area north of and including Red Deer, approximately half the province of Alberta. Sample and Procedures Staff at the participating clinics mailed the anonymous questionnaires to caregivers from their client databases who had children born after October 1, 1996, ,and had initial contact at the centres between October 1, 2000 and October 1, 2002 (N = 765). Questionnaires were distributed in a single mailing; 142 completed surveys were returned for a response rate of 18.5%. The research team had no access to patient identity or records, which restricted the ability to send out targeted second mailings to non-responders. Data on children reported as having FASD or ADHD were extracted from the respondents. Fourteen respondents indicated their child had been diagnosed with FASD (N=12) or alcoholrelated neurodevelopmental disorder (ARND) (N=2); this group is designated as CFASD (children with fetal alcohol spectrum disorder). Fifteen caregivers indicated their child had been diagnosed with attention-deficit/hyperactivity disorder (ADHD); this group is designated as CADHD (children with ADHD). In cases where children were identified as having both ADHD and FASD (n=3), they were included in the CFASD group, as this would provide a more conservative approach for investigating the hypothesis that the FASD group would have lower rates of mental health services use. Measures Data were collected through a parent self-report service utilization questionnaire. Items covered utilization of key service providers, referral patterns, services and treatments received, and concerns about services received. These items were drawn from issues raised in qualitative interviews with key stakeholders, including parents, providers, and administrators, and also from variables covered in other utilization studies. Ten parents of children with special needs participated in a pilot of the survey questionnaire and provided feedback for further refinement of the instrument. Data Analysis Univariate and bivariate analysis (chi-square with Pearson’s continuity correction) are reported. In addition, service utilization maps were constructed to capture the service patterns of three children with FASD and provide a pictorial representation of service experiences of individual cases. Ethics Ethics approval was obtained from the joint ethics board of the Capital Health Region and the University of Alberta. The mailed survey was accompanied by a letter clearly describing it as part of a research study in which participation was voluntary and for which identifying information was not collected; return of the completed instrument constituted consent. RESULTS Child characteristics are presented in Table 1. CFASD were more likely to be residing with a foster parent (79%) than CADHD(13%) (χ2= 15.435, p < .001). Caregivers were asked to indicate whether their child had any of a list of eight difficulties (Table 1). Over half the children in each sample experienced behaviour, social, and sleeping problems, with a mean of 4.6 problems for CFASD (S.D. 1.2) and 4.3 problems for CADHD (S.D. 2.2). The majority of children with FASD also experienced developmental delays and feeding problems. JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 3 Mental health and other service use by young children with fetal alcohol spectrum disorder TABLE 1 Characteristics of respondents’ children Descriptor Children with FASD % (n) Children with ADHD % (n) Sex Male 50.0 (7) 66.7 (10) Age 0-48 months 21.4 (3) 0 (0) 49-60 months 14.3 (2) 20.0 (3) 61 months and older 64.3 (9) 73.3 (11) Parent 7.1 (1) 73.3 (11) Foster Parent 78.6 (11) 13.3 (2) Other 14.3 (2) 13.3 (2) CASA* 64.3 (9) 73.3 (11) GRH† 35.7 (5) 26.7 (4) Disruptive Behaviour 78.6 (11) 93.3 (14) Social Problems 78.6 (11) 80.0 (12) Developmental Delay 78.6 (11) 46.7 (7) Sleep Disturbance 64.3 (9) 53.3 (8) Feeding Problems 57.1 (8) 26.7 (4) Receptive Language Delay 50.0 (7) 26.7 (4) Expressive Language Delays 42.9 (6) 53.3 (8) Toileting Problems 14.3 (2) 26.7 (4) Relationship of Respondent with Child Location Problems Experienced *Child and Adolescent Services Association, Edmonton, Alberta †Glenrose Rehabilitation Hospital, Edmonton, Alberta JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 4 Mental health and other service use by young children with fetal alcohol spectrum disorder parents reported disruptive behaviours, 73% of CFASD and 93% of CADHD consulted mental health professionals. Among children with social problems, 82% and 92% respectively saw mental health professionals. All three CFASD with comorbid ADHD had received mental health services. On the whole, more CFASD saw paediatricians than did CADHD. Caregivers were asked to identify the professionals their child had seen as well as their respective sources of referral. Fewer CFASD accessed mental health professionals than did CADHD (Figure 1). Although the differences were not significant, in part due to the small sample size, this trend was seen in each type of mental health professional (psychiatrist, psychologist, mental health/behaviour therapists). Of children whose Family Doctor Speech and Occupational Pediatrician Psychiatrist Language Therapist Pathologist 8 6 .7 Mental Health or Behaviour Therapist 3 5 .7 4 6 .7 5 0 .0 6 0 .0 6 4 .3 8 0 .0 5 7 .1 4 6 .7 6 4 .3 7 1 .4 6 0 .0 7 8 .6 8 0 .0 100 90 80 70 60 50 40 30 20 10 0 7 8 .6 8 6 .7 P e rc e n t a g e o f c h i l d re n v i s i t e d (% ) FIG.1: Frequency distribution of the professionals seen by children with FASD and with ADHD Psychologist Any Mental Health Professional Professional seen Children with FASD (N=14) Referrals to mental health professionals originated from a variety of sources. In the ADHD group, 19 referrals to mental health specialists were made by paediatricians or family doctors, while only five such referrals were made by these professionals in Children with ADHD (N=15) the FASD group (Figure 2). Also of note is that four parent/guardian self referrals to mental health were made for CFASD, while none were made in the case of CADHD. JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 5 Mental health and other service use by young children with fetal alcohol spectrum disorder FIG. 2 Referrals to mental health care providers received by children with FASD and children with ADHD from different professionals and service providers. All CFASD who had received services from at least one mental health professional had also seen at least one other type of mental health professional, a phenomenon we designate as “service clumping,” that is, the tendency for children to receive either multiple services and/or consultations or no services and/or no consultations. In this case, a child either saw multiple mental health professionals, or no mental health professionals. As shown in Table 2, five CFASD (35.7%) and four CADHD (26.7%) saw at least one provider from each of the four following categories: primary care (family doctor 6 and/or paediatrician), mental health care, speech and language therapy, and social work. Several children saw providers from two or fewer of these categories (35.7% and 46.7% respectively) (Table 2). Caregivers were also asked about a series of specific treatments and services. More CADHD received medication than did CFASD, while more CFASD received psychological assessments than did CADHD (Table 3). Differences are not statistically significant. Of the three children with both FASD and ADHD, two had received medication (66.7%). JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 Mental health and other service use by young children with fetal alcohol spectrum disorder TABLE 2 Number of multidisciplinary team components accessed by CFASD and CADHD Numbe r of multidisciplinary team components accessed by child* CFASD % (n) CADHD % (n) One 7.1 (1) 0.0 (0) Two 28.6 (4) 46.7 (7) Three 28.6 (4) 26.7 (4) Four 35.7 (5) 26.7 (4) *Four multidisciplinary team components include: Primary Care Physician (paediatrician and/or family doctor), Mental Health Professional (psychiatrist, psychologist, behaviour therapist/mental health therapist), Speech and Language Therapist, and Social Worker. Figures 3, 4, and 5 are service utilization maps depicting the service experiences of three children with FASD. In Figure 3, the family doctor acts as a single entry point to the service system, making multiple referrals to diverse services in order to meet the child’s needs. The linkage of the child’s social worker to these providers is unknown. Figure 4 shows a different pattern, where multiple professionals made multiple referrals and there is no clear pathway to mental health or other care. Three separate entry ways into the system were reported: two paediatricians, a social worker, and the caregiver herself. The child in Figure 5 has TABLE 3 Assessments and treatments received by children with FASD and with ADHD Assessments Treatments Other Services accessed a variety of health professionals through two service entry points, but did not obtain any mental health services. The questionnaire also asked caregivers to identify difficulties they had experienced in receiving services for their child. Over half of caregivers for both groups of children indicated that “repetition of their child’s story” and “lack of information about available services” were problems in care. Seventy-one percent of caregivers of CFASD cited “navigating the health and social services systems” as a concern, while only 40% of caregivers of CADHD reported this problem. Children with FASD % (n) Children with ADHD % (n) Genetic 0.0 (0) 13.3 (2) Hearing 78.6 (11) 73.3 (11) Psychological 78.6 (11) 53.3 (8) Speech and Language Therapy 57.1 (8) 60.0 (9) Occupational Therapy 50.0 (7) 40.0 (6) Medications 50.0 (7) 73.3 (11) Daycare 35.7 (5) 33.3 (5) Respite 57.1 (8) 40.0 (6) JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 7 Mental health and other service use by young children with fetal alcohol spectrum disorder FIG.3 FIG. 4 Professional referral pattern for a 37 month old male with FASD Professional referrals for a 58 month old child with FASD, post-traumatic stress disorder, and reactive attachment disorder. JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 8 Mental health and other service use by young children with fetal alcohol spectrum disorder FIG. 5 Professional referrals for a 72 month old boy with FASD CONCLUSIONS The findings suggest that young children with FASD receive variable services. Some of these services include seeing a mental health professional. However, there appears to be no clear pathway to mental health providers. Furthermore, some children who may have benefited from these services had not received them. In our sample, children with FASD were less often referred to mental health professionals by primary care physicians when compared to children with ADHD. Without additional information, it is difficult to understand this pattern. Certainly paediatricians with their specialized knowledge of children, as well as certain family doctors, may address some of the children’s mental health needs without needing to access a mental health specialist. There may also be concerns that primary care doctors may miss some mental health problems. Several studies have noted the low detection rate of mental health problems in primary care practice.24-26 Although some children with FASD are accessing an array of professionals and services from different disciplines, it is unknown to what degree these different professionals were working together as a multi-disciplinary team, as per several recommendations.6,16,17 In addition, a number of children failed to receive involvement from a range of disciplines. Given the lack of clinical data available to this study, it is unknown whether this reflects an appropriate response to different JFAS Int 2006;4:e1 - Feb. 2006 © The Hospital for Sick Children 2006 9 Mental health and other service use by young children with fetal alcohol spectrum disorder needs within the population of CFASD, including some whose management may appropriately be handled by a single health care professional. The complex referral patterns seen among these children may be a concern. There does not appear to be any clear standardized pathways for accessing services. Multiple entry points in a system may have certain advantages, such as a greater flexibility in gaining entry to some services. For example, some mental health services do not require physician referral; hence the failure to recognize a mental health problem by the primary care doctor may not be a barrier if caregivers can refer their own child. However, this then requires the caregiver to identify the mental health problem and to know how to selfrefer to such services. Multiple entry points can also be confusing to the caregiver attempting to obtain services. Some children may fall through the proverbial cracks, causing delays in interventions, which could cause a significant difference in their health outcomes. It is unknown to what degree the relatively new centralized intake system for child mental health services in Edmonton, Canada is assisting children with FASD and their caregivers. There are several limitations to this pilot inquiry. First, the sample size is small, resulting in unstable estimates and inadequate power for some assessments of differences between groups and correlates between variables. Second, given the overall low response rate, it is unknown whether these children represent the population evaluated at specialty centres. Third, as the children were all recruited from specialty centres, they are by definition connected to at least one service/provider. Children not attending specialty centres are likely to receive less total services, including mental health care, than the children in this study. Fourth, there is a reliance on caregiver self-report. As surveys were anonymous, consent for the consultation of medical records could not be attained. There is limited knowledge on the accuracy of recall of service receipt by caregivers, and in particular, foster parents. However, it is often foster parents, in conjunction with social services, who seek diagnostic services for children with FASD. By studying young children with a limited service history, caregiver recall problems may be reduced. Fifth, more detailed service information was not available, such as the presence and extent of teamwork between providers or the number of visits made by a child to each of the professionals. Despite these limitations, this preliminary analysis suggests many avenues for further inquiry. There is a pressing need for the systematic collection of service utilization information on children with FASD and other high risk children in order to adequately understand our present state of service delivery and to provide empirical data to guide system reform. Particular attention should be given to the access to and use of mental health services among children with FASD, given the high rates of mental health problems. In addition, concomitant collection of clinical and functional information on these children over time is essential for the assessment of the impact of the present array of services offered these children and their families. Such information is crucial for service providers, service and policy decision-makers, caregivers, families, and advocates of children with FASD. Corresponding Author: [email protected] REFERENCES 1. 2. 3. 4. 5. 6. 7. Abel EL, Sokol RJ: A revised conservative estimate of the incidence of FAS and its economic impact. Alcohol Clin Exp Res 1991;15(3): 514-24. Robinson GC, Conry JL, Conry RF: Clinical profile and prevalence of fetal alcohol syndrome in an isolated community in British Columbia. CMAJ 1987;137(3): 203-7. FASD; Health Canada. Fetal alcohol spectrum disorder: A framework for action. 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