"Don't Promise Something You can't Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism.

Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.

Barriers to service and unmet need among autistic adolescents and young adults.

LAY ABSTRACT: Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

Service Use Among Transition-Age Youth with Autism Spectrum Disorder.

This study explored predictors of service use among 174 transition-age youth (age 16-30) with an Autism Spectrum Disorder using Andersen's (J Health Soc Behav 36(1):1-10, 1995) healthcare utilization model. Family caregivers were interviewed about past 6-month use of 15 services. On average, youth used 6.1 and needed 3.2 additional services. Greater service use was associated with two predisposing (caregiver college educated, caregiver not married/partnered), two enabling (youth has Medicaid waiver, youth in high school), and one need factor (lower adaptive functioning). Use of specific services was most strongly related to enabling (Medicaid waiver, in high school) and need factors (lower adaptive functioning, comorbid mental health diagnosis). Findings provide a snapshot of the "service cliff" faced by families and highlight the need for additional research.

Factors affecting mental health service utilization among Latino Americans with mental health issues.

BACKGROUND: In contrast to their white counterparts, Latino Americans are less likely to utilize mental health services. AIMS: Guided by the Behavioral Model of Health Service Utilization, this study examined factors affecting use of mental health services and dropouts from mental health services among Latino Americans with mental health issues. METHODS: This is a secondary analysis utilizing data from the National Latino and Asian American Study. Seven hundred 88 Latinos with mental health issues were included in this study. Logistic regression analyses were conducted. RESULTS: Being older, having health insurance, having self-perceived need for mental health services, having mental health service need perceived by others and a greater number of probable psychiatric disorders were associated with the use of mental health services among Latinos with mental health issues. Among 194 Latino mental health service users, being younger, not having health insurance, and having a lower level of family support were associated with dropouts from mental health services. CONCLUSIONS: The findings suggest that education is needed to help Latino Americans recognize the need for mental health services. In addition, policies are needed to address financial difficulties in accessing mental health services.

The mediating role of mattering to others in recovery and stigma.

OBJECTIVE: This study examines the role of mattering to others as an intrapersonal construct that may mediate the relationship between social support and 2 separate criterion variables: recovery and internalized stigma associated with living with a serious mental health condition. Adults living with serious mental health disorders, such as schizophrenia, face numerous social challenges that may leave them feeling isolated, stigmatized, and that they do not matter to others, thus thwarting the potential for recovery. Theorists and researchers conceptualize the sense of mattering to others as the perception that 1 is valued, recognized by others along with the feelings that others are concerned about our well-being. METHOD: Clubhouse members (N = 119) completed 1-hr, in-depth personal interviews assessing perceived social support, experiences of mental health recovery, and stigma associated with living with a mental health condition as well as a sense of mattering to others. RESULTS: Mediation analyses revealed the significant effects of mattering to others as explaining the relationship between social support and recovery as well as the relationship between social support and internalized stigma. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The findings illuminate our understanding as to how social support interventions can enhance recovery and reduce stigma associated with living with a psychiatric condition by attention to perceptions of whether one is valued and recognized by others. Mattering to others among consumers of social and health care interventions can serve to engage individuals who may withdraw from supports or internalize negative self-stereotypes based on internalized stigma. (PsycINFO Database Record

Family perspectives of how their relatives with mental illness benefit from Clubhouse participation: a qualitative inquiry.

BACKGROUND: Although researchers have demonstrated the benefits of psychosocial Clubhouse participation on a number of clinical and psychosocial outcomes, few studies have investigated the consumer's participation from the perspectives of others. AIM: This study aimed to investigate family members' perspectives of how Clubhouse programming has affected consumers' recovery. METHOD: Twenty-four relatives of Clubhouse members were interviewed using a semi-structured protocol. Relatives were nominated by their Clubhouse members as their family member who provided them with the most social support. All interviews were transcribed and underwent content analysis yielding multilevel coding. RESULTS: Four main dimensions emerged from family interviews about how Clubhouses affected their relatives. These dimensions aligned with areas of clinical recovery and personal growth. Family members observed and noted changes in: (1) positive affective changes, (2) improved goal directed and challenging behaviors, (3) positive attitude changes and (4) greater social interactions. CONCLUSION: As one of the first studies to document the perspectives of the relatives of Clubhouse members, this exploratory study indicates that family members recognize positive changes in their Clubhouse family members and these changes align with areas of functional recovery. Implications for practice and future studies are discussed.

The Effects of Organizational Culture on Mental Health Service Engagement of Transition Age Youth.

Nationwide, there is a growing concern in understanding mental health service engagement among transition age youth. The ecological perspective suggests that there are multiple barriers to service engagement which exist on varying levels of the ecosystem. Based on the socio-technical theory and organizational culture theory, this study examined the impact of organization-level characteristics on perceived service engagement and the moderating role of organizational culture on practitioner-level characteristics affecting youth service engagement. A cross-sectional survey research design was used to address the research questions. The data were collected from 279 practitioners from 27 mental health service organizations representing three major metropolitan areas in Ohio. Hierarchical linear modeling was used to address a nested structure. Findings revealed that location of organization, service setting, and organizational culture had significant effects on the continuation of services. In addition, the relationship between service coordination and resource knowledge and service engagement was moderated by organizational culture.

Predictors of loneliness of clubhouse members.

OBJECTIVE: Loneliness can impede subjective experiences of recovery. This study examines the relationship between clubhouse participation and loneliness using standardized instruments while controlling for age, gender, living status, and social network characteristics. METHOD: A random sample of 126 members from one clubhouse was recruited for this cross-sectional investigation. A hierarchical multiple regression analysis was performed to examine the association between participation and loneliness. RESULTS: A greater number of clubhouse visits, greater perceived availability of social support and higher levels of overall satisfaction with social network relationships were significantly related to a lower level of loneliness after controlling for covariates. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Service providers may want to pay more attention to those members experiencing loneliness and help them connect with others. Future studies using longitudinal analyses are needed to further assess the causal relationship between clubhouse participation and loneliness. Multiple aspects of participation should be examined.

Correlates of peer support in a clubhouse setting.

The purpose of this study was to examine the social support characteristics and correlates of peer networks for Clubhouse members. A random sample of 126 members from one Clubhouse was requested to nominate social network members and asked a series of questions about characteristics of supports provided by each network member. Respondents with both peers and non-peers in their network, three fifths of the sample, had more frequent contacts with peers than with non-peers and were more satisfied with peer relationships than with non-peer relationships. Those respondents also reported that peers were less critical than non-peers. Among all respondents, being Caucasian and having better quality of social life were correlated with having a peer network while higher degree of reliance on others and more Clubhouse visits were correlated with having a Clubhouse network. Longitudinal studies are needed to further investigate the relationship between quality and benefits of peer support.

Likelihood of asking for help in caregivers of women with substance use or co-occurring substance use and mental disorders.

Family members are important to the well-being of their relatives with substance use disorders or co-occurring substance use and mental disorders. Many caregivers experience high levels of burden, negatively impacting their capacity to provide support to their ill family member. The Andersen health care utilization model (Andersen & Newman, 1973, 2005) was used to identify the impact of predisposing, enabling and need factors hypothesized to predict caregivers' likelihood of asking for help and support with their caregiving role. The sample include 82 women recruited from outpatient or inpatient substance abuse treatment centers and 82 family caregivers nominated by these women. Findings showed that almost half of caregivers were unlikely to ask for help. Multiple regression analysis found that two need variables were statistically signficant predictors of caregivers' likelihood to ask for help. Caregivers who had higher subject burden (worry) and caregivers who provided more assistance with daily living were more likely to ask for help. It is suggested that case managers assess the amount of worried family caregivers' experience because their worries may provide the motivation to ask for help or to participate in help when it is offered to them.

Maladaptive Coping as a Mediator of Family Stress.

Family members of women substance users may be at risk for stress-related problems. Family coping responses may affect outcomes for both families and women in treatment. Eighty-two women in treatment for substance use disorders (56 with comorbid psychiatric conditions) and 82 family members were interviewed. Stressors related to women's disorders were significantly related to increased family member burden. Women's behavioral problems predicted greater family member Worry, Displeasure, and Impact. Extent of women's drug or alcohol use predicted greater family member Stigma and Impact. Family member maladaptive coping partially mediated relationships between family member stressors and family member Displeasure and Impact. Family member maladaptive coping also functioned as a moderator between the stressors and Impact.

A university-agency mental health research collaboration: a case example.

There is significant documentation in the literature of barriers that may prevent research results from being utilized by agencies to inform and impact practice and policy. Such barriers pertain to several factors as follows: (a) those related to the nature of the research enterprise itself (b) those related to differences between the producers and consumers of research, and (c) barriers arising from the differences in organizational contexts of researchers and case management and supported employment agency staff. This article discusses a collaborative relationship between university researchers and agency practitioners in the context of a research project studying the implementation of supported employment, an evidence-based practice. As a case example, it provides an exemplar of the problems and issues of conducting mental health research with community-based agencies and offers strategies and case examples that address these issues.

Predictors of Depressive Symptomatology in Family Caregivers of Women With Substance Use Disorders or Co-Occurring Substance Use and Mental Disorders.

This study utilized a stress-process model to examine the impact of having a female family member with substance use or co-occurring substance use and mental disorders on family caregivers' depressive symptomatology. Participants were 82 women receiving substance abuse treatment and the family member providing the most social support for each woman. Greater caregiver depressive symptomatology was predicted by greater care recipient emotional problems, less care recipient social support, and poor caregiver health. Implications of findings for treatment and future research are discussed.

Predictors of referral to Supported Employment among consumers with co-occurring mental and substance use disorders.

Clinical trials demonstrate that Supported Employment is effective in assisting persons with severe mental illness in obtaining competitive employment. However, little is known about the factors related to consumers' decisions to pursue employment, especially for consumers with co-occurring substance and mental disorders. This study examines the demographic, socioeconomic and illness characteristics of consumers referred for Supported Employment services. Consumers were drawn from Integrated Dual Diagnosis Treatment programs in four community mental health agencies. Study participants included 113 consumers referred for Supported Employment services and 78 randomly selected non-referred consumers as the comparison group. Results suggest that consumers who have past work experience are more likely to be referred to Supported Employment, while consumers who perceive themselves as disabled or who are diagnosed as substance dependent are less likely to be referred to Supported Employment. Implications for agency practice and future research are discussed.

Older case management clients with younger family members in need of care: interdependencies and well-being.

This exploratory study investigated caregiving and interdependencies in families of frail older case management clients who coreside with younger individuals in need of care. Analyses were based on interviews with 78 older adults recruited from a large urban case management program. To be eligible for the study, the older adult had to coreside with an individual under age 60 who had disabilities or chronic health problems and/or with minors. Results indicated that the majority of older adults were primary caregivers for at least one younger individual In a substantial number of families, the older adult depended on a younger adult with disabilities for primary care. Older adults who lived with both younger adults with disabilities and minors experienced more negative affect than those who lived with only one of these two kinds of younger individuals. Positive affect among elders living with younger adults with disabilities was positively related to the number of formal services received by the younger adults. The implications of these findings for service delivery to families with complex needs for care are discussed.

Predictors of psychiatric hospitalization for adults with co-occurring substance and mental disorders as compared to adults with mental illness only.

Predictors of psychiatric hospitalization, predisposing, enabling and need, of adults with co-occurring mental and substance disorders were compared to predictors for adults with a mental illness only. Research participants were 1613 users of crisis intervention services. Findings using Cox regression show that dually-diagnosed individuals were more likely to be hospitalized. Enabling and need factors were important predictors for both groups. Disruptive behavior was a predictor for dually-diagnosed clients but not for clients with mental illness only. Findings suggest that outpatient mental health services are less well equipped to address a psychiatric crisis when it was accompanied by substance use issues.

Facilitators and barriers to support group participation for family caregivers of adults with mental illness.

OBJECTIVE: Few low-income and minority caregivers of persons with serious mental illness participate in support groups. This study examined the facilitators and barriers to participation in support groups for families of persons with serious mental illness among lower socioeconomic African-American and Caucasian family caregivers. Three hypotheses were tested in a multivariate model which included need, enabling and predisposing variables utilizing a revised version of the Andersen model. Support group membership was hypothesized to be predicted by a higher perceived cost-benefit ratio (benefits minus costs) of group participation, fewer numbers of access barriers and higher levels of service use. METHODS: A non-experimental cross-sectional design was used. Subjects were 145 lower socioeconomic status African-American and Caucasian family caregivers, 65 of whom were current support group members and 80 of whom had never participated in support groups. RESULTS: Findings confirmed that support group members reported a more favorable cost-benefit ratio and fewer access barriers than did non-support group members, controlling for other variables. Level of non-support group service use was not significantly different for support and non-support group members. CONCLUSIONS: Non-members' assessments of support group participation may be based on inaccurate perceptions and/or incomplete knowledge. Educational campaigns, sponsored by support groups and mental health authorities focusing on both perceptions about support groups as well as structural impediments to participation, such as access barriers, should be undertaken.

Empowering African American women informal caregivers: a literature synthesis and practice strategies.

Through a synthesis of literature on caregiving, empowerment, social inequalities, and racial disparities in health and income, the authors built an argument for African American women caregivers' vulnerability to powerlessness and the applicability of an empowerment approach to social work practice with these caregivers. The article discusses two realities of African American women caregivers' experiences (strong coping and vulnerability) and two relevant theoretical frameworks (stress and coping and empowerment frameworks) for framing these experiences. Drawing on empowerment and other relevant literature, the authors recommend three practice strategies with these caregivers.