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Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16-30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access--but not quality--service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research.

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.

Studies commonly measure the challenges of caring for autistic adolescents and young adults, but scarcely explore the positive aspects of the caregiving experience. This study employed an equal-status concurrent mixed methods approach to quantitatively assess predictors of positive aspects of caregiving and qualitatively examine 174 caregivers' perceived rewards, or positive aspects, of caring for autistic adolescents and young adults (ages 16–30 years). Results from multiple regression analyses suggest that youth's helping behavior most strongly predicted positive aspects of caregiving, and youth receiving more services and caregivers' greater report of social support and use of religious, acceptance, and instrumental support coping also significantly predicted greater reported positive aspects of caregiving. Findings from a phenomenologically informed thematic analysis suggest that caregivers find reward in witnessing youths' progress and joyous qualities, in the caregiver–youth relationship, and in caregivers' own growth. Mixed methods findings highlight that positive aspects of caregiving likely extend caregivers' self-development and may be relationship-specific. Study findings offer a strengths-based framework that highlights the positive aspects of caring for autistic adolescents and young adults. We contribute to the research in defining factors related to positive aspects of caregiving, which may inform future work and contribute to caregiver well-being. We wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study's open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers' psychological well-being. [ABSTRACT FROM AUTHOR]

There are significant knowledge gaps concerning the experiences of families of persons with co-occurring substance and mental disorders and the impact of families on treatment of individuals with these disorders. This paper presents a conceptual framework for examining family involvement of adults in treatment for co-occurring substance and mental disorders. An overview of the characteristics, problems, and needs of these individuals and their family members is presented. The extant literature pertaining to our conceptual framework is reviewed with focus on predictors of family involvement with clients, predictors of family member involvement in clients' treatment, and consequences of family involvement for client treatment outcomes. Gaps in the research literature and implications for future research and practice are discussed.

This article reports on a research partnership between a community-based hospice and a graduate school of social work. The purpose of the collaboration was to design and test a tool for assessing caregiver strain and resources in families caring for older adults receiving hospice home care services. Eighteen hospice home care social workers interviewed 162 caregivers for the study and provided their own assessment of the tool's clinical utility. Both strengths and challenges of the collaboration are evaluated and implications are discussed for social work practice and research, particularly academic-community research partnerships. doi:10.1300/J083v50n01_02 KEYWORDS. End of life, hospice, family caregiving, academic-community partnership

Background and Objectives Quantitative and qualitative data from a statewide survey of family members of nursing home residents were analyzed to determine the predictors of, and motivations for, family involvement. Research Design and Methods We examined 3 types of involvement: visiting, providing personal care, and family–staff communication. Our mixed methods approach used (a) multilevel regression models to examine predictors of family involvement, including family member perceptions and resident, family member, and facility characteristics, and (b) a thematic analysis of qualitative data regarding the experiences of family members and their motivations for involvement. Results Families were more involved when a short-term stay (<3 months) was expected, and when residents were in poorer physical condition. Spouses and female family members were more involved than others, yet the effect of gender varied by relationship type. At the facility level, families of residents in rural facilities reported less family involvement. Aside from these commonalities, predictors of each type of involvement varied. Themes from the qualitative data identify unique motivations for each type of involvement—to enhance residents' identity, care, or quality of life. Discussion Families visit more and provide more hands-on assistance when they are not confident in the care being provided or the well-being and stability of their resident loved one. Receiving adequate information, perceiving staff as friendly, and residents as looking well cared for promote greater family–staff communication. Implications Findings can inform strategies to increase meaningful family involvement in nursing homes. [ABSTRACT FROM AUTHOR]

Purpose of Study This study focuses on the relationship between family involvement and family perceptions of nursing home residents' quality of life (QOL). Design and Methods Resident and family variables from the 2012 Ohio Family Satisfaction Survey were merged with facility information from the Certification and Survey Enhanced Reports (CASPER). Hierarchical linear modeling was used to examine the association between family involvement and other predictors with perceived resident QOL. Results Although most of the variability in family member perceptions of resident QOL was observed at the individual level (residents and families), characteristics of the facilities were also significantly associated with perceived resident QOL. Family involvement was a strong predictor of perceived resident QOL: Families who visited frequently and provided more help with personal care perceived lower resident QOL, while those who communicated frequently with facility staff had higher perceptions of resident QOL. Interestingly, the negative association between helping with more personal care and perceiving lower resident QOL was attenuated when family members communicated more regularly with facility staff. However, as family member age increased, the positive association between communication with facility staff and resident QOL diminished. Family members who are spouses, older, non-White, and highly educated perceived resident QOL as lower. Implications Meaningful family involvement is a modifiable factor that can potentially enhance resident QOL. Facilities can become more family-oriented through encouraging communication between staff and families, helping spouses and other family members fulfill their desired caregiving role, and discussing the family's motivations for providing personal care during visits. [ABSTRACT FROM AUTHOR]

A series of dialogues among service providers was held in greater Cleveland, Ohio, to increase understanding about gay and lesbian aging, identify issues in working with this population, and develop strategies for improving local services and opportunities for older gays and lesbians. Evaluation of the series suggested that it greatly increased awareness and sensitivity among those in attendance and more modestly changed the community and organizations represented. Follow-up activities by participants included targeted outreach, related conversations with supervisors and coworkers, policy review, and in-service training. Suggestions are made for replicating the series in other communities. [ABSTRACT FROM AUTHOR]

Using a transactional model of stress and coping, we examined the general (i.e., Problem-Focused, Emotion-Focused) and religious (i.e., Self-Directing, Collaborative, Deferring) coping strategies used by 64 caregivers to spouses with dementia to cope with their most significant, albeit uncontrollable, caregiving hassle over a two-month period. With respect to general coping, we hypothesized that caregivers who used Emotion-Focused coping would demonstrate fewer Depressive Symptoms at Month 2 after controlling for Depressive Symptoms at Month 1. With respect to religious coping, we hypothesized that caregivers who used Deferring Coping would also demonstrate fewer Depressive Symptoms. Results revealed interesting patterns between caregivers' use of general and religious coping strategies. Contrary to our hypotheses, caregivers who used Emotion-Focused and Collaborative coping reported greater Depressive Symptoms. Implications for the empirical study of stress and coping and directions for future research are discussed. [ABSTRACT FROM PUBLISHER]