Exploring the nature and correlates of caregiving among parents of adults with intellectual and developmental disabilities.

BACKGROUND: As adults with intellectual and developmental disabilities (IDD) have longer lives, parents may remain caregivers into old age. In addition, it is unknown who will fulfil caregiving roles after parents are no longer able to be caregivers. In the current study, we explored the nature (e.g. number of hours of caregiving) and correlates of parental caregiving for their adult offspring with intellectual and developmental disabilities and their future caregiving plans. METHOD: In the United States, data were collected from 334 parents of adults with intellectual and developmental disabilities via a national survey. RESULTS: Altogether, 55% of the sample spent more than 15 hr conducting caregiving per week. Individual characteristics (e.g. maladaptive behaviour and functional abilities) and parent characteristics (e.g. physical proximity of the adult with intellectual and developmental disabilities and caregiving ability) positively correlated with caregiving hours. Notably, 38.58% of participants were unsure who would fulfil caregiving roles. CONCLUSION: Implications for research about caregiving and practice are discussed.

Compound sibling caregivers of individuals with intellectual and developmental disabilities.

BACKGROUND: Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to compare the perspectives of compound, single and non-caregiving siblings of adults with IDD. METHOD: This study investigated 332 adult siblings of individuals with IDD in the United States via a national web-based survey. Participants included: 152 non-caregivers, 94 single caregivers (i.e., caregivers only for their brothers and sisters with IDD), and 86 compound caregivers (i.e., caregivers for their brothers and sisters with IDD and at least one other vulnerable individual). RESULTS: Single and compound sibling caregivers (versus non-caregivers) had more positive relationships and conducted greater advocacy and future planning activities. CONCLUSIONS: Given the potential for compound sibling caregiving, further investigation is warranted.

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities.

BACKGROUND: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. METHOD: This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. RESULTS: Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. CONCLUSIONS: The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving.

Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy.

BACKGROUND: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families. METHOD: Data were collected via a national survey in the United States with 189 parents of adults with IDD. RESULTS: Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers. CONCLUSION: The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs.

Exploring the preliminary outcomes of a sibling leadership program for adult siblings of individuals with intellectual and developmental disabilities.

Although adult siblings often fulfill caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD) and report needing support, little intervention research has been conducted with adult siblings of individuals with IDD. The purpose of this pilot study was to examine the preliminary outcomes of a leadership and support program for adult siblings of individuals with IDD. Pre, post and follow-up survey data indicated that the program correlated with increased sibling connectedness and empowerment. Additionally, the program met sibling expectations with respect to: connectedness, empowerment, and resources. Siblings were highly satisfied with the program. Also, siblings wanted to impact systemic change, especially with respect to the adult service delivery system. Implications for research and practice are discussed.

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities.

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities.

Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

Self-directed support: impact of hiring practices on adults with intellectual and developmental disabilities and families.

The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed waiver program who used personal assistance services. Results indicated that the caregiver's satisfaction with the personal support worker, self-efficacy in managing personal support workers, and mental health varied significantly based on type of personal support worker hired. Also, the physical health and daily choice making of the adults with disabilities differed significantly by type of personal support worker hired.

Support needs of siblings of people with developmental disabilities.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.