## Abstract

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.

Siblings of people with disabilities have been traditionally overlooked by parents, professionals, and researchers as a group with support needs and as potential advocates for their siblings with disabilities. Although the needs of people with developmental disabilities and their parents have been the focus of extensive research within the disability field, research on the needs of siblings is lacking (Hodapp, Glidden, & Kaiser, 2005). Much of the early research pathologized the experience of growing up with a brother or sister with a disability (Stoneman, 2005). More recent research on the sibling experience finds a mix of both positive and negative outcomes (Gallagher, Powell, & Rhodes, 2006). The support needs of adult siblings of people with developmental disabilities have received little attention by researchers up to this point. This study aimed to help fill this gap and give voice to the perspective of siblings so that their needs could be addressed by professionals and policymakers.

Siblings often become the next generation of caregivers when parents are no longer able to fill this role (Heller & Kramer, 2009). Sixty percent of people with developmental disabilities live with their families, and in 25% of these homes the primary caregiver is over the age of 60 (Braddock et al., 2011). As parents age and are less able to support their child with a disability, the involvement of siblings in the lives of their brothers and sisters with disabilities becomes more necessary. A review of the adult sibling literature found that most siblings anticipated taking on a greater supportive role in the future (Heller & Arnold, 2010).

The perspective of siblings of people with disabilities has not been looked at extensively in the research on families and disabilities, and the parent perspective is often incorporated, which is not always the same as siblings' self-reporting. However, a national survey of adult siblings by Hodapp, Urbano, and Burke (2010) showed siblings have service needs related to their struggle to balance care for their sibling with disabilities, their aging parents, and their own families. A study by Rawson (2009) interviewed siblings aged 17–23 years whose brothers and sisters with disabilities lived in a residential school for people with complex needs and found that siblings needed transition information, specifically on legal and financial planning, housing, and education. Siblings requested greater communication and wanted to be engaged in the decisions related to their brothers and sisters with disabilities. Also, Heller and Kramer (2009) surveyed adult siblings and found that the major support needs of siblings include the need for information, especially on planning for the future, as well as support groups both in person and online. The present study builds on the research done with siblings of people with disabilities and goes into greater depth with the perspective of siblings through a qualitative analysis.

Although support programs and services have been developed for individuals with developmental disabilities and their parents, supports for their siblings have been limited and mostly focused on children. There has been some intervention research that looks at the supports for siblings when they are children. Targeting nondisabled siblings for interventions to teach interaction skills and strategies was found to increase sibling play, communication, and successful interaction (Celiberti & Harris, 1993; Clark, Cunningham, & Cunningham, 1989; James & Egel, 1986). Sibling support groups for children were found to improve self-esteem, increase knowledge of their sibling's disability, and enhance interactions between siblings (Evans, Jones, & Mansell, 2001). Groups such as Sibshops provide “opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context” (Meyer & Vadasy, 1994, p. 1). An evaluation of Sibshops by Johnson and Sandall (2005) suggests that providing support to siblings during childhood can have an enduring positive effect throughout their lives.

As siblings become more involved in the care of their brother or sister with a disability, their own support needs may increase. By understanding the needs of nondisabled siblings, parents and professionals can better empower and encourage siblings in supporting their brothers and sisters with disabilities. This study investigates the support needs of siblings of people with a developmental disability so they can be addressed by parents, professionals, and policymakers.

## Method

The present study was part of a larger survey study of adult siblings of people with developmental disabilities (Heller & Kramer, 2009) that focused on the factors influencing involvement of siblings of individuals with disabilities in future planning. For the present study, selected items from the main survey were analyzed using two of the open-ended questions from the original survey, which allowed respondents to share their concerns and support needs.

### Sample

The sample included 139 adult siblings of people with developmental disabilities. Adult siblings of people with developmental disabilities aged 18 and older were recruited through two strategies: an online Yahoo! Group listserv called SibNet and a statewide sibling conference. First, information about the research study was posted on SibNet, a listserv for adult siblings of people with disabilities. At the time of dissemination, SibNet had 485 members with unique e-mail addresses, yet only 426 of those e-mail addresses were valid. One hundred sixteen SibNet members responded, and eight respondents were excluded who were under 18 years old and therefore below the age of consent. The total number of respondents from SibNet in this study is 108 siblings. Second, surveys were handed out at a statewide sibling conference to 57 people. The survey was completed by 31 siblings who attended the conference. Combining the respondents from SibNet and the sibling conference, the overall corrected sample consisted of 139 respondents out of 483 for a response rate of 31%.

### Limitations

Some limitations exist in this research. The study used a cross-sectional data set from only one point of time. Also, a convenience sample was used, capturing responses from siblings who were already connected to some sibling support, and the results may not be generalizable to siblings who are not connected to SibNet or sibling conferences. This may be a more involved group than is typical and may not represent siblings who are less involved in the lives of their siblings with disabilities and therefore not connected to any sibling support. The majority of the sample included women, yet this reflects the gendered nature of caregiving in the literature (Levine et al., 2010). Also, the sample of respondents was fairly educated, with few minorities. Additionally, the research was limited because it did not include the voice of people with disabilities and relied on self-reported information of siblings. However, this study is one of the first that really looked at the voice of siblings of people with developmental disabilities.

### Future Research

Although this research study helps fill a gap in the disability sibling literature, additional research is recommended that includes the siblings with and without disabilities and examines family dynamics beyond just the sibling dyad to see how whole families interact to support each other throughout their lifespans. The sibling experience of people with disabilities is especially important to capture to gain insight into the benefits of supporting people with disabilities. Also, intervention research should examine successful ways to negotiate the transition of caregiving roles from parents to nondisabled siblings to foster positive outcomes for the entire family. Additionally, further research should be done to capture the experiences of siblings who are not already connected to sibling support programs, such as reaching siblings through provider and parent networks, as well as getting the sibling experience in other countries.

## Conclusion

The results of this research provided descriptive information about the support needs of adult siblings of people with developmental disabilities. The study helped give voice to the sibling perspective. The hope is that this information will be used by parents, professionals, and policymakers to address these concerns and support needs. These findings have implications for future policy and research. More opportunities are needed for siblings of people with developmental disabilities to connect, network, and share information and resources. Family support services must include siblings so that they are supported to be involved in the care of their brother or sister with disabilities in whatever way they choose. Siblings are an important resource for the disability field as future caregivers and untapped constituents in the disability policy movement. Additional research on siblings is important to increase the understanding of the supports that benefit siblings and their entire families.

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## Author notes

Editor-in-Charge: Susan Havercamp

This research was supported by a grant from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (Grant H133B080009) to the Rehabilitation Research and Training Center on Aging and Developmental Disabilities: Lifespan Health and Function, University of Illinois at Chicago. The content does not necessarily represent the policy of the U.S. Department of Education, and endorsement by the federal government should not be assumed.

Catherine K. Arnold (e-mail: kkeiling@uic.edu), University of Illinois at Chicago, Department of Disability and Human Development, 1640 W. Roosevelt Road, Chicago, IL 60608-1336, USA; Tamar Heller, University of Illinois at Chicago; and John Kramer, University of Massachusetts, Boston.