Service Use and Perceived Service Effectiveness for People with Intellectual Disability and Dual Diagnosis in Israel

Introduction: Studies regarding the use of support services for persons with a dual diagnosis of intellectual disability and psychopathology are scarce; even fewer have focused on children and young adults. The aim of the present study, conducted in Israel, was to compare the use of support services and their perceived effectiveness by families of children and young adults with intellectual disability (ID) and with dual diagnosis. Methods: Data were collected from 195 family (parental) caregivers of individuals with ID or dual diagnosis, aged 10–30. Using a structured questionnaire, family caregivers reported on the use of support services and on their perceived effectiveness. Results: Findings showed that in addition to the obvious mental health services, caregivers of individuals with ID and dual diagnosis report using a range of services and resources. Caregivers of persons diagnosed only with ID perceived some of the mental health services as being more effective than did caregivers of individuals with dual diagnosis. Conclusion: We advocate for enhanced training for professionals working with individuals with dual diagnosis within all services. Furthermore, parents need to be supported in their search for services for their child and in dealing with complex situations. In addition, more research is needed to identify why individuals with dual diagnosis may not benefit from current mental health services and, in line with this, develop more effective services. Finally, we advocate for the establishment of a one-stop shop that can provide for the comprehensive needs of these individuals within one center.     

Different dimensions of social support for the caregivers of patients with schizophrenia: main effect and stress-buffering models

The aims of this study were: (i) to assess the impact of caring for patients with schizophrenia on the mental health status of the caregivers; and (ii) to examine the direct and buffer effects of social support on the mental health status of these caregivers. A total of 61 key caregivers of patients with schizophrenia were administered the Chinese Health Questionnaire (CHQ) and the Measure of Support Function (MSF) self-report questionnaire to assess their mental health and social support status. The MSF questionnaire constitutes four subscales, including: (i) the perceived crisis support (PCS); (ii) the perceived routine support (PRS); (iii) the received crisis support (RCS); and (iv) the received routine support (RRS) subscale. The Positive and Negative Syndrome Scale (PANSS) was used to assess the psychopathology severity of the patients they cared for. Then the authors used the hierarchical multiple regression model to analyze the relationship between these variables. The psychopathology severity of the patients reflected by the PANSS scores correlated inversely with the caregivers' CHQ scores. Besides, the PCS subscale scores correlated positively with the caregivers' CHQ scores. Moreover, the interaction between the RCS subscale scores and the PANSS scores was significant. Significant positive correlation between the RCS and CHQ exists only in the higher PANSS subgroup, but not in the lower PANSS subgroup. The psychopathological severity of the patients has a negative impact on their caregivers' mental health. PCS has a direct effect, and RCS has a buffer effect on the mental health status of these caregivers.     

Mental health services and young people with intellectual disability: is it time to do better?

Background There is evidence that the mental health needs of children with disabilities are inadequate. The aim of the present study was to determine the extent of specialist health service use during adolescence by a group of individuals with intellectual disability (ID) and mental health problems. Method The study population consisted of 80 young people with ID, who were examined in childhood and adolescence for psychiatric and behaviour disorder. These young people were interviewed again in early adult life for the presence of psychiatric and behaviour disorder. Evaluation questionnaires were used during the follow‐up study to assess service use from adolescence. Results The key finding was that the great majority (64%) of subjects with persistent challenging behaviour from childhood into adult life and those with an established childhood psychiatric disorder received no specialist mental health care. Conclusions The development of mental health services for this vulnerable group with complex psychiatric and behaviour disorders has been poor for a number of reasons, including lack of recognition at the primary care level and insufficient numbers of trained professionals within specialist services.     

Health professionals' attitudes and emotions towards working with adults with intellectual disability (ID) and mental ill health

Objectives Mainstream mental health services are providing more care for individuals with an intellectual disability (ID); this has implications for staff and service users. Attitudes of staff towards people with ID in mental health services may be negative and negative staff attitudes may have a detrimental impact on service provision. Design A cross‐sectional design was used. Methods A questionnaire designed to investigate the attitudes and emotions of staff towards delivering mental health care to adults with ID was completed by 84 staff from mainstream and specialist ID services. Results Staff in both services experienced more positive emotions when working with clients whom they are currently employed to work with. When the frequency of contact with adults with ID, the number of individuals worked with and the amount of formal ID training received were considered, there was no significant difference between the attitudes of staff in both services. Positive correlations were found between attitude scores and positive emotional experiences in both services. Conclusions The research suggests that numerous factors, including the role of emotional experience and a number of environmental aspects, need to be considered in the context of providing mental health services to adults with ID to ensure the highest quality. Research limitations and clinical implications of the study are also considered.     

Mental health need and access to mental health services by youths involved with child welfare: a national survey

OBJECTIVE:This study assessed the relationship between the need for and use of mental health services among a nationally representative sample of children who were investigated by child welfare agencies after reported maltreatment. METHOD: Data were collected at study entry into the National Survey of Child and Adolescent Well-Being and were weighted to provide population estimates. RESULTS: Nearly half (47.9%) of the youths aged 2 to 14 years (N = 3,803) with completed child welfare investigations had clinically significant emotional or behavioral problems. Youths with mental health need (defined by a clinical range score on the Child Behavior Checklist) were much more likely to receive mental health services than lower scoring youth; still, only one fourth of such youths received any specialty mental health care during the previous 12 months. Clinical need was related to receipt of mental health care across all age groups (odds ratio = 2.7-3.5). In addition, for young children (2-5 years), sexual abuse (versus neglect) increased access to mental health services. For latency-age youths, African-American race and living at home significantly reduced the likelihood of care. Adolescents living at home were also less likely to receive services, whereas having a parent with severe mental illness increased (odds ratio = 2.4) the likelihood of service use. CONCLUSIONS: Routine screening for mental health need and increasing access to mental health professionals for further evaluation and treatment should be a priority for children early in their contact with the child welfare system.     

Mental health problems in children with intellectual disability: use of the Strengths and Difficulties Questionnaire

Background The assessment of mental health problems in children with intellectual disability (ID) mostly occurs by filling out long questionnaires that are not always validated for children without ID. The aim of this study is to assess the differences in mental health problems between children with ID and without ID, using a short questionnaire, the Strengths and Difficulties Questionnaire (SDQ). Methods We studied 260 children (6–12 years) selected from special education schools for trainable children (response: 57%). Parents completed the extended Dutch version of the SDQ, questions on background characteristics and on the care provided. A non‐ID control group of 707 children (response: 87%) was included to compare mental health problems. Results In total, 60.9% of children with ID had an elevated score on the SDQ, compared with 9.8% of children without ID. Only 45% of the children with ID and an elevated SDQ score had visited a healthcare professional for these problems in the last 6 months. Discussion The SDQ or an adapted version could contribute to the early identification of mental health problems in children with ID. Further research is needed to confirm the validity of the SDQ when used in a sample of children with ID.     

Queensland psychiatrists' attitudes and perceptions of adults with intellectual disability

Background Quality mental health care for adults with an intellectual disability (ID) depends upon the availability of appropriately trained and experienced psychiatrists. There have been few surveys of psychiatrists working with this population. Method This Australian study obtained psychiatrists’ attitudes to and perceptions of the mental health needs of adults with an ID. Training needs were also sought. The survey instrument used was a purposely designed, 28‐item self‐administered questionnaire featuring multiple‐choice and open‐ended questions. Results The majority of psychiatrists expressed concerns about treatment of this group, describing unmet needs. A total of 75% considered that antipsychotics were overused to control aggression, and 34% of psychiatrists were reluctant to treat adults with an ID. In total, 85% agreed that mental health in ID should be offered as a training option for psychiatric registrars, and that specialized mental health services would provide a high standard of care for this population. Conclusion Broad concerns are raised regarding pathways to mental health care for adults with an ID in Australia. An Australia‐wide training strategy needs to be developed. Partnerships between mental health, disability and community services that serve the mental health needs of this population, should actively seek to engage psychiatrists.     

Experiences of mental health services by people with intellectual disabilities from different ethnic groups: a Delphi consultation

Background Patient experience of those accessing mental health services has been found to be different between ethnic groups. Although the needs of people with intellectual disabilities (ID) from different ethnic communities are being increasingly recognised, little has been published about their experiences of mental health services. The aim of this study was to establish whether there are any differences in the experiences of people with ID and mental health problems from two ethnic communities in South London. Method A two‐round Delphi process was utilised. White British and Black or Black British service users from a specialist community‐based mental health service for adults with ID completed a specially compiled questionnaire. Statements on participants' experiences, including satisfaction with care, staff members' attitudes, cultural awareness and level of support, were rated using a Likert scale. Results Twenty‐four out of 32 participants (75%) completed both rounds of the Delphi consultation. Consensus (≥80% agreement with the group median) was reached for 20 items in the White group and five items in the Black group. All responses that reached consensus were positive about the services that were being received. The Black group were less positive about a range of their experiences, including the use of medication. Conclusions People with ID from two ethnic groups were able to successfully complete a Delphi consultation regarding their experiences of mental health services. Broad consensus on positive experiences of services was reached in the White group but not for the Black participants.     

Ethnic variation in service utilisation among children with intellectual disability

Background   This study examined whether service utilisation among children with intellectual disability (ID) varied by ethnic cultural group.
Method   Survey carried out in four special schools in London. Information was provided by school teachers using case files, and 242 children aged 7 to 17 years with mild and moderate ID were identified. Ethnic categories were derived from self-reported main categories. Service utilisation categorised as use of: child and adolescent mental health services (CAMHS), social services, physical health and education services.
Results   Child and adolescent mental health services uptake was lower for South Asians than for White British ( P  = 0.0487). There were statistically significant differences among ethnic groups for community-based social services uptake (being the highest for the Black groups and the lowest for South Asians, P  = 0.015) and respite care uptake (being the highest for the Black and White European groups and the lowest for South Asians, P  = 0.009). In regression analysis family structure predicted CAMHS service utilisation and social service community support. Ethnicity predicted use of respite care.
Conclusions   Significant ethnic differences in service utilisation among children with ID were found for both CAMHS and social service contact. There was particularly low service use for the South Asian group. These differences might arise because of differences in family organisation, as more South Asian children lived in two-parent families, which may have been better able to provide care than single-parent families. Other factors such as variation in parental belief systems and variation in psychopathology may be relevant. Implications are discussed.     

Mental health services for children of substance abusing parents: voices from the community

This qualitative study explores how to improve services for children of parents with Substance Use Disorders (SUD) with unmet mental health needs. Focus groups were conducted with parents and caregivers to identify perceived barriers to services, including: (1) attitudes and beliefs about mental health care, (2) inadequacies in mental health services, (3) children’s ambivalence about treatment, and (4) parental disagreement and lack of involvement. Peer support, afterschool activities, and family counseling were identified as potential improvements. This information can serve as a foundation and guide to develop services for the underserved population of children and adolescents of substance abusing parents.     

Engaging and Supporting Young Children and their Families in Early Childhood Mental Health Services: The Role of the Family Partner

This study explores the role of family partners, peer professionals with lived experiences of raising a child with behavioral health needs, and their value in primary and community-care based mental health services for young children aged 0–8 years. Interviews and focus groups were conducted with staff, leadership, and caregiver participants (n?=?38) from two early childhood mental health programs and analyzed using thematic analysis. Five interdependent themes emerged: (1) the centrality of lived experience to the family partner role; (2) the importance of the family partner in family engagement and relationship building; (3) the value added by the family partner in navigating systems; (4) the ability of the family partner to build skills and empower caregivers; (5) the role of the family partner in alleviating caregiver stress and other mental health concerns. Adapting and expanding the role of family partners will improve effective mental health care for children and their caregivers.

     

Factors associated with high care burden of primary caregivers of children with medical complexity after completing a discharge-support program in a recovery center

IntroductionRecently, many seriously ill children requiring medical equipment are being recommended to transition from hospital to home care in Japan. Since 2011, our recovery center has provided a support program for the transfer process from hospital to home for ill children and their families. The purpose of this study was to evaluate the factors related to high care burden after completing the discharge-support program.MethodsA questionnaire-based cross-sectional study was conducted on all primary caregivers whose children received the program in our center and moved from hospital to home (30 children and 29 families) from May 2011 to May 2018. Fifteen children came from the neonatal intensive care unit. The questionnaire consisted of three parts: characteristics of children and families and life after the program; the Zarit Burden Interview (ZBI); and the Positive and Negative Affect Schedule (PANAS).ResultsTwenty-three primary caregivers responded (79% response rate). All children received tracheostomy and 71% received home mechanical ventilation. Primary caregivers were all mothers. High ZBI score was not related to the severity and type of medical equipment. There were relationships between high ZBI score and following factors: ‘unimproved relationship between patients and family members without primary caregivers’ and ‘additional medical equipment after discharge’. The result of PANAS showed that positive attitude was not different between those with high and low ZBI scores.ConclusionIt is crucial to reach out to family members without a primary caregiver. Additional medical care/equipment after the program is related to the care burden of primary caregivers.     

Perceptions of the process of care among caregivers and care recipients in dementia care networks

The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness.     

A pilot study of the reliability and validity of the Caregiver Activity Survey – Intellectual Disability (CAS-ID)

Background People with Down's syndrome (DS) are at increased risk of Alzheimer‐type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day‐to‐day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS‐ID), was developed and tested for use by professional caregivers in the present study. Methods The CAS‐ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS‐ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter‐rater reliability were investigated. Results The final version of the CAS‐ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care‐related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = ?0.770), the Test for Severe Impairment (TSI; r = ?0.881) and the Daily Living Skills Questionnaire (DLSQ; r = ?0.855). Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS‐ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.     

Healthcare needs of people with intellectual disability in institutions in Taiwan: outpatient care utilization and implications

Background The present study assessed the outpatient care use of people with intellectual disability (ID) in order to identify patterns of healthcare needs and the factors affecting this utilization. Methods The primary method used in this study was a cross‐sectional survey of 1390 subjects with ID in Taiwan. Data were obtained from questionnaires completed at 30 registered institutions caring for people with ID. Results The findings show that people with ID in Taiwan are likely to make more outpatient visits per year than members of the general population. The prevalence of illness in people with ID was 41%, with epilepsy being the most frequently reported disease. A total of 39.5% of individuals with ID took medicine regularly, and 38.9% had used alternative forms of medication besides Western medicine. In terms of the use of outpatient facilities by people with ID, paediatric clinics were the most frequently utilized. The average monthly number of outpatient visits per person with ID was 2.18 (around 26 visits per year). This study found that the need for outpatient care is determined by a variety of factors relating to: the age of people with ID, the type of handicap, the place of medical treatment, having a family physician, the accessibility of medical care, the time‐consuming nature of the medical visits, having an illness, ID accompanied with other disabilities, and finally, a need for rehabilitative care. Conclusions From the examination of the expressed needs of people with ID, it was found that these individuals have a heightened need for healthcare and the treatment of special diseases/disorders in comparison to members of the general population in Taiwan. Within the context of ordinary services, it is particularly important to have a precise view of the ways in which the health needs of people with ID are different from the general population as a whole. This will enable healthcare services to respond to these needs, either through support systems within generic care or, in some cases, through the delivery of specific healthcare through specialized services which are kept separate from generic care.     

Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments

Aim To compare the conceptual differences, internal consistency, and validity of the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL‐Child), the Child Health Questionnaire (CHQ), and a European generic health‐related quality of life (HRQOL) questionnaire (10‐domain version; KIDSCREEN‐10) for children with cerebral palsy (CP). Method Two hundred and four primary caregivers (185 females [91%], 19 males [9%]) of children with CP aged 4 to 12 years (mean 8y 4mo [SD 2.51]; 112 males [55%], 92 females [46%], Gross Motor Function Classification System level I=18%, II=28%, III=14%, IV=11%, V=28%) provided demographic data and completed the CP QOL‐Child, CHQ, and KIDSCREEN‐10. Fifty‐four children with CP aged 9 to 12 years completed the CP QOL‐Child and KIDSCREEN‐10. Results The KIDSCREEN‐10 and CP QOL‐Child were developed to measure general HRQOL and CP‐specific QOL respectively, whereas the CHQ was developed to measure functional health and well‐being. In terms of internal consistency, KIDSCREEN‐10 (Cronbach’s α=0.86) and CP QOL‐Child (0.74–0.91) outperformed the CHQ (0.18–0.96). In terms of validity, all instruments were moderately correlated. Floor and ceiling effects, although minimal or not evident for KIDSCREEN‐10 and CP QOL‐Child (1–4.9%), were apparent for CHQ (0.5–62.9%). Interpretation Conceptually and psychometrically, KIDSCREEN‐10 and CP QOL‐Child performed more strongly than the CHQ, for children with CP. The choice between these two instruments will depend on the questions posed and outcomes sought by the researcher or clinician.     

Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder

Autism spectrum disorder (ASD) affects individuals across all racial and ethnic groups, yet rates of diagnosis are disproportionately higher for Black and Hispanic children. Caregivers of children with ASD experience significant stressors, which have been associated with parental strain, inadequate utilization of mental health services and lower quality of life. The family peer advocate (FPA) model has been utilized across service delivery systems to provide family-to-family support, facilitate engagement, and increase access to care. This study used a randomized controlled design to examine the efficacy of FPAs in a racially and ethnically diverse sample. Results demonstrate significantly increased knowledge of ASD and reduced levels of stress for caregivers who received the FPA intervention as compared to treatment as usual.     

Unmet needs for services for older adults with mental illness: comparison of views of different stakeholder groups.

OBJECTIVE: The authors assessed the need for mental health services among older adults in San Diego County, California, by determining what needs were not being addressed by existing services, what services were necessary to address these needs, and how much consensus there was among different stakeholders with respect to the problems and solutions related to service delivery. METHODS: Semistructured interviews were conducted with 23 health care and social service providers and administrators, 16 services consumers and other older adults (55 years of age and older), and 19 caregivers/family members and patient/client advocates. This was followed by four focus groups comprised of 18 providers and administrators, six focus groups comprised of 50 consumers and other older adults, and five focus groups comprised of 39 caregivers (family members and advocates). RESULTS: The unmet needs fell into three categories: mental health services, physical health services, and social services. Two interrelated themes were identified by participants: 1) the need for age-appropriate and culturally appropriate services to overcome barriers to mental health services access, use, and quality; and 2) the interrelations between unmet needs that address prevention as well as treatment of mental illness, including socialization and social support, transportation, housing, and physical health care. Differences in stakeholder assessment of unmet needs were associated with respective roles in delivery and use of mental health services. CONCLUSION: Age-appropriate and culturally appropriate solutions that address both prevention and treatment may represent the best strategies for addressing the challenges of mental illness and are most likely to be endorsed by all three groups of stakeholders.     

Health, healthcare utilization and psychiatric disorder in people with intellectual disability in Taiwan

Objectives The aims of the present study were to examine health characteristics and healthcare utilization in relation to people with intellectual disability (ID) having psychiatric disorders in Taiwan. Methods A cross-sectional study was employed; study subjects were recruited from the National Disability Registration Database. Taiwan, stratified by administrative geographical area for the study. Statistical analysis of 1026 carers for people with ID was made to examine the health status and healthcare utilization of individuals with ID having psychiatric disorders. Results Approximately 12.1% of people with ID had psychiatric disorders. These individuals were more likely to be poorer in health condition and consuming more medical services (in the outpatient, inpatient and emergency care areas), than those individuals without psychiatric disorders. These individuals with psychiatric disorders were also taking medicines regularly at a far greater percentage than did those without psychiatric disorders. Conclusions Given the high prevalence of psychiatric disorders among individuals with ID, the healthcare system should take further steps to develop an appropriate health status monitoring system and community-based and easily accessible mental health services for them.