Abstract

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.

Siblings have the longest-lasting familial relationship (Cicirelli, 1995). When a disability is present, siblings may fulfill unique roles related to their brother or sister with an intellectual or developmental disability (IDD), such as caregivers (Burke, Taylor, Urbano, & Hodapp, 2012; Orsmond & Seltzer, 2000) and advocates (Burke, Arnold, & Owen, 2015). As siblings transition to more caregiving roles, they may need to collaborate with professionals to navigate the adult disability service delivery system (Coyle, Kramer, & Mutchler, 2014).

Although adult siblings of individuals with IDD play important roles, siblings are often not involved in service coordination for their brothers and sisters (Chambers, Hughes, & Carter, 2004). Even family-centered approaches to service provision often only refer to parental involvement, leaving siblings without communication or information about services (Begun, 1996). The lack of sibling involvement may be due to the enormity of the adult service delivery system and lack of knowledge among siblings (Burke, Fish, & Lawton, 2015). In addition, some professionals discourage sibling involvement (Arnold, Heller, & Kramer, 2012). To date, most studies have focused on the perceptions of adult siblings (versus professionals) in navigating the service delivery system. Thus, it is unclear whether, as suggested by some siblings, professionals discourage sibling involvement or, alternatively, whether professionals do in fact encourage sibling involvement. Before the partnerships between professionals and siblings can be strengthened, it is important to understand how professionals perceive siblings. Specifically, the purpose of this study was to identify how professionals encourage sibling involvement, as well as positive experiences and challenges in working with siblings.

Unlike parents who are involved with professionals since the time their offspring received a diagnosis, siblings enter the service delivery system later in life. Indeed, siblings may be waiting for professionals to encourage their involvement in the daily lives of their brothers and sisters with IDD, especially in relation to services. Unfortunately, few examples of professionals encouraging adult sibling involvement exist. In one of the few studies to examine professional-sibling relationships, Bigby, Webber, and Bowers (2015) described the working relationships between siblings and staff at group homes for adults with IDD. Siblings and professionals reported that sibling involvement changed over time. Depending upon the time and the disposition of the sibling, the degree of involvement varied. Siblings mentioned staying involved with their brothers and sisters with IDD by monitoring the services and caregiving they received from the group homes, as well as frequent communication with professionals. This study was limited to a small convenience sample of involved siblings; presumably, such siblings would be involved with professionals regardless of whether professionals reached out. By examining how professionals encourage sibling involvement, we can begin to determine whether such strategies are effective in encouraging sibling involvement, especially among siblings who are not involved.

In addition, it is important to understand the characteristics of positive working relationships between siblings and professionals. Characteristics of positive sibling-professional relationships can be rolled into future interventions to improve such relationships. For example, when siblings are knowledgeable, involved, and are close with their brothers/sisters with IDD, professionals may develop strong relationships with siblings. Siblings may have unique knowledge about their brothers and sisters with IDD (Saxena & Adamsons, 2013), reap positive benefits (e.g., increased empathy) from their brothers and sisters (Hodapp, Urbano, & Burke, 2010), and enjoy spending time with their brothers and sisters with IDD (Burke, Fish, & Lawton, 2015). Regarding closeness, compared to siblings of individuals without IDD, adult siblings of individuals with IDD report closer sibling relationships (Burbidge & Minnes, 2014). Although the evidence above points to a growing understanding of positive sibling relationship qualities, more knowledge is needed about qualities that characterize positive professional-sibling relationships. This study extends the literature by emphasizing professional-sibling relationships; by examining the experiences of professionals, positive characteristics of professional-sibling relationships can be identified and capitalized on in future interventions about professional-sibling relationships.

Finally, it is important to identify challenges in relationships between professionals and adult siblings. By identifying challenges, interventions and supports can be developed to overcome such barriers. For example, some siblings may not want to be involved with their brothers and sisters with IDD. Lack of involvement may be due to resentment or negative experiences with their brothers and sisters (Guse & Harvey, 2010). Alternatively, siblings may not become involved with their brothers and sisters with IDD until their parents pass away (Holl & Morano, 2014). Insights of professionals about challenges with uninvolved siblings will be helpful so that, in the future, professionals can have guidance about how to work with such siblings.

Given the roles of siblings of individuals with IDD and their involvement with adult disability service providers, it is important to understand how professionals encourage sibling involvement and the positive characteristics and challenges in working with siblings. To date, most studies about siblings of individuals with IDD have relied on convenience samples often representing the perspectives of the most involved siblings (Hodapp, Glidden, & Kaiser, 2005). Of the extant research, it seems clear that siblings want information from professionals; siblings also report that professionals discourage sibling involvement. However, there are two sides to every story and, with respect to professional-sibling relationships, the story has been one-sided (so far). By understanding how professionals encourage sibling involvement as well as positive experiences and challenges in working with siblings, we can develop interventions and guidelines to help professionals and siblings collaborate. For this study, we conducted a national survey with 290 professionals who responded to three open-ended questions. This study contributes to the literature by examining ways to involve adult siblings in the service delivery system, and identifying facilitators and challenges to professional-sibling relationships. The research questions for this study were:

  • 1.

    How do professionals encourage sibling involvement?

  • 2.

    According to professionals, what have been the most positive experiences in working with siblings?

  • 3.

    From the perspective of professionals, what is the biggest challenge in working with siblings?

Method

Recruitment

Participants in this study were part of a larger study to examine adult siblings of individuals with IDD. The larger survey included different questions for: adult siblings of individuals with disabilities, parents of individuals with disabilities, adults with disabilities, and professionals who work with adults with IDD and their families. For this study, we focused on professionals who work with adults with IDD and their families.

To attain a diverse national sample, participants were recruited in multiple ways. First, e-mails and recruitment flyers were distributed to local, state, and national parent support groups throughout the United States. In addition, e-mails and recruitment flyers were distributed to Centers for Independent Living, state and local chapters of The Arc, University Centers for Excellence in Developmental Disabilities, and Protection and Advocacy Agencies, as well as to the Sibling Leadership Network and state sibling chapters. There was no financial incentive to participate in the survey.

Participants

A total of 290 professionals who work with adults with IDD participated in this study (see Table 1). Ranging in age from 20 to 71, the average respondent age was 43.96 (SD = 12.93). On average, participants were highly educated, with 85.17% (n = 247) having at least a college degree. The sample was primarily White, with 11.37% (n = 33) of participants from minority backgrounds. Regarding geographic diversity, professionals represented Washington, DC, and 45 of the 50 states, excluding Arkansas, Hawaii, Maine, Wyoming, and Vermont. All professionals indicated that they worked with adults with IDD and their families, including siblings. Participants worked in a variety of capacities, including direct service providers (e.g., respite worker), administrators (e.g., agency director), and supervisors (e.g., supports coordinator). Most participants worked as licensed professionals (i.e., had graduate degrees in a disability field); such participants included social workers, attorneys, and psychologists.

Table 1

Participant Demographics (N = 290)

Participant Demographics (N = 290)
Participant Demographics (N = 290)

Procedures

In collaboration with professionals and families of adults with disabilities, the survey was developed and revised. First, the authors (who were also siblings of individuals with disabilities) developed the survey based on the literature about adult siblings (e.g., Burke, Taylor, Urbano, & Hodapp, 2012; Heller & Arnold, 2010). The survey was then reviewed by professionals and family members of adults with disabilities. Before launching the survey, we piloted the survey with five professionals who worked with adults with IDD and their families. Upon reviewing their feedback and revising the survey, the study was submitted to and approved by a university institutional review board. The survey was then put onto a secure survey platform, Qualtrics. Responses were downloaded periodically to guard against computer malfunctions. The study was posted from January 2015 to April 2015. All of the surveys were completed electronically; however, participants could complete and return paper versions of the survey. The professional survey took 20–30 minutes to complete.

Measures

The survey included closed- and open-ended questions. The close-ended section was comprised of 33 questions. Of the close-ended questions, there were 22 demographic questions about the participant and the agency the participant worked for and two questions about paid caregiving. Nine questions were items about the perceptions of professionals about adult siblings of individuals with IDD. The items were created for this study based on extant literature (e.g., Arnold et al., 2012; Burke, Fish, et al., 2015). Unfortunately, the items did not comprise a scale (Cronbach's alpha < .5). For context, we provide the close-ended questions and the responses in Table 2. Responses showed that the majority of professionals had positive perceptions toward siblings.

Table 2

Perceptions Toward Siblings of Individuals With IDD

Perceptions Toward Siblings of Individuals With IDD
Perceptions Toward Siblings of Individuals With IDD

Note. IDD = intellectual and developmental disabilities.

*

This item would be reverse-coded.

The respondents were then asked a series of four open-ended questions. For this study, we analyzed responses to three open-ended questions: (1) How do you, as a professional, encourage adult sibling involvement?; (2) What have been your most positive experiences in working with adult siblings?; and (3) What is the biggest challenge in working with adult siblings? The other question related to adult siblings transitioning to parent caregiving roles, which, although important, was not the focus of this study. All 290 participants responded to the open-ended questions.

Analyses

The first and second author first read the responses to familiarize themselves with the data (Tesch, 1990). Then, constant comparative analysis (Glaser & Strauss, 1967) and emergent coding (Patton, 2002) were used to independently code the data. Each piece of data was compared with all other data (Creswell, 2003) to discern whether each piece of data represented a novel idea (i.e., new code) or aligned with a previously mentioned idea and should be part of an existing code. Most participant responses included multiple ideas within a given response; most of these ideas were provided in the form of phrases. Thus, the data were coded at the level of each phrase (i.e., piece of data) so as to not miss any novel ideas. After all of the data had been coded, the authors met to discuss the codes and come to consensus. Within this discussion, the authors reviewed each phrase and their suggested codes. If the authors agreed on the code, then they would establish that as a code. If there was not agreement, the authors discussed their rationales for their given codes until they came to a consensus. After reviewing and agreeing upon all of the codes, the authors returned to the data again for analysis. Using the established codes, the authors coded the data. Upon meeting again, the authors grouped the codes into categories and organized the categories into themes grounded in the data.

All themes were qualitatively evaluated for patterns with respect to race, gender, profession, and age; no patterns were identified. Additionally, the authors conducted frequency counts of the individual themes to indicate prevalence. For example, in response to challenges that professionals face in working with adult siblings, the first and second author independently read the open-ended responses and developed codes. Some codes related to caregiving, such as “caregiving burden,” “burden,” “stretched too thin,” “caregiving responsibilities,” and “too much responsibility.” Then, the authors met to debrief. The authors agreed to return to the responses and examine the data for codes related to “caregiving.” At the next meeting, the authors grouped the codes into categories (i.e., caregiving responsibilities and guilt) and then organized the categories into a theme—caregiving burden.

Similarly, when responding to ways to encourage sibling involvement, the first and second author independently read and coded the open-ended responses. Some codes related to inviting siblings to attend “therapy sessions,” “assessment procedures,” and “service meetings.” The authors met to debrief and agree on the codes. After returning to the data with the agreed-upon codes, the authors grouped the codes into the category “invite siblings to events with their brothers and sisters.” Then, with other categories (e.g., build relationships with siblings, address the uniqueness of each sibling experience), the authors grouped the categories into the theme person-level supports. This theme was chosen because all of the categories related to individual (i.e., person-level) supports for the siblings.

Validation

During the analysis, the first and second author separately coded the data, debriefed with one another, and then reanalyzed the data. In addition, they conducted negative case analysis to further refine the themes (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005). The negative case analysis occurred after the authors had identified the themes; the authors then carefully and independently reviewed the open-ended responses to determine whether there were any phrases that contrasted with the identified themes. No opposite themes were found. The full range of open-ended responses was included in this study to allow a range of findings to emerge (Erlandson, Harris, Skipper, & Allen, 1993). Member checking was conducted with two professionals who were not included in the sample. The professionals were sent the themes identified in the study; the professionals were asked whether the themes aligned with their own perceptions of siblings. The two professionals independently validated this study's findings. Finally, peer reviews were conducted when the data were shared at a conference for professionals in the IDD field. In this setting, samples of the open-ended responses were shared with professionals. The professionals discussed their interpretations of the data, which were similar to our findings.

Results

Overall, professionals had positive perceptions toward siblings. Specifically, more than 60% of the professionals reported that, frequently, siblings were a good source of information, siblings should understand the service delivery system, and sibling involvement should be welcomed. More generally, 86.2% of professionals reported that family involvement is frequently helpful in the context of individuals with disabilities (see Table 2). In this section, we present findings related to ways to encourage sibling involvement, positive experiences with siblings, and challenges in working with siblings.

Ways Professionals Can Encourage Sibling Involvement

Regarding ways to encourage sibling involvement, two themes were identified: person-level supports (70% and n = 154) and systems-level supports (41.8% and n = 92; see Table 3). The categories within each theme are described in this section.

Table 3

Frequencies of Themes

Frequencies of Themes
Frequencies of Themes

Note. IDD = intellectual and developmental disabilities.

Person-level supports: Invite siblings to events with their brothers and sisters

Of the professionals, 30% (n = 66) reported that professionals should personally invite siblings to events for their brothers and sisters. To encourage sibling involvement, professionals reported that they could provide siblings with options and suggestions for involvement. Specifically, professionals reported that siblings could be invited to attend service meetings, therapy sessions, assessment procedures, events, and recreational activities.

Person-level supports: Build relationships with siblings

For 25.5% (n = 56) of professionals, building a relationship with siblings was identified as a strategy to encourage sibling involvement. Building relationships with siblings included creating a welcoming environment, listening to siblings, being empathetic, and advocating for siblings. For example, a 67-year-old retired social worker reported that she developed relationships with siblings, “By talking with them, valuing their viewpoints. By asking their opinion. By allowing them to express their emotions, and validating them.”

Person-level supports: Address the uniqueness of each sibling experience

Of the professionals, 14.5% (n = 32) reported that it was important to recognize that each sibling is different. Specifically, professionals reported that each sibling experience is different depending on age, type of disability, and family dynamics. Put simply by a 37-year-old female support coordinator, “there is no cookie cutter approach” to encouraging sibling involvement.

Systems-level supports: Education and resources

Nearly 32% (n = 71) of professionals reported that siblings needed education and resources related to understanding the disability of their brothers/sisters, planning for the future, navigating adult disability services, and advocating for services. Professionals reported that they should educate siblings about services, advocacy, and the needs of the brother/sister with a disability, as well as make recommendations for services and caregiving to further educate siblings. By providing education and resources, professionals reported that they could encourage sibling involvement.

Systems-level supports: Sibling-specific supports

Professionals (9.5% or n = 21) reported that they could encourage sibling involvement by offering support groups, mentoring opportunities, and events for siblings. Specifically, sibling-specific events (e.g., sibling support programs) may facilitate sibling involvement.

Positive Experience in Working With Siblings

With respect to positive experiences in working with siblings, two themes were identified: benefits to the individual with IDD (71.9% and n = 166) and family relationships (39.4% and n = 91).

Benefits to the individual with IDD: Sibling involvement

Of the professionals, 42.9% (n = 99) reported enjoying seeing the benefits of sibling involvement for the individual with IDD; specifically, professionals reported that sibling involvement enabled their brothers and sisters with IDD to have more independent lives. Siblings were often involved by attending events for their brothers/sisters such as “annual meetings,” “doctor appointments,” “social skills programs,” “Special Olympics,” and “therapy sessions.” Professionals reported that siblings motivated and encouraged their brother and sisters to make their own decisions. By being involved in events, siblings benefitted their brothers/sisters with IDD and professionals enjoyed working with siblings.

Benefits to person with IDD: Sibling knowledge

Almost 20% (19.9%; n = 46) of professionals reported enjoying seeing how siblings' “wealth of knowledge” benefitted their brothers/sisters. Professionals reported that siblings had knowledge about their brothers and sisters regarding: communication needs, services, and legal rights. Using their knowledge, professionals reported that siblings advocated for their brothers and sisters. Some professionals reported that sibling advocacy enabled their brothers and sisters to secure employment and access to leisure events. By having knowledge and advocating, siblings provided benefits to their brothers/sisters, which contributed to positive experiences with professionals.

Benefits to person with IDD: Caregiving

Among professionals, 9.1% (n = 21) reported that siblings benefitted their brothers and sisters by being caregivers; seeing siblings provide caregiving was a positive experience perceived by professionals. Even among siblings whose parents were still alive, professionals reported that some siblings were preparing to transition to caregiving roles. A 31-year-old female supervisor at a residential services agency reported, “It is great when you have a sibling that is heavily involved and agrees to assist with care when the parents are gone.”

Family relationship: Close siblings

Many professionals (26.4% or n = 61) reported having positive experiences when siblings had close relationships with their brothers/sisters with IDD. Close sibling relationships were described as “protective,” “loving,” “supportive,” “respectful,” “proud,” “bonding,” “caring,” and “responsible.”

Family relationship: Close families

Of the professionals, 7.4% (n = 17) reported that family relationships, including working with close-knit families, were positive experiences. In describing positive experiences working with close families, a 61-year-old psychologist reported, “A family where the sibling's needs were made as important as the disabled sibling's needs. The sibling felt as much love and willingness to take responsibility for the [disabled] sibling as humanly possible.”

Family relationship: Siblings versus parents

Of the professionals, 5.6% (n = 13) reported that, compared to parents, siblings were easier to work with. Professionals reported that siblings (versus parents) were more “open,” “objective,” “patient,” and “accepting.” A 50-year-old clinician reported, “One sibling got her sister to be involved in social events which the 90 year old mom was not willing to do.” Thus, compared to parents, professionals reported enjoying working with siblings.

Challenges in Working With Siblings

With respect to challenges in working with siblings, three themes were identified: lack of sibling involvement (86.4% and n = 190), systems barriers (12.3% and n = 27), and caregiving burden (8.6% and n = 19).

Lack of sibling involvement: Difficult to access siblings

As reported by 51.8% of professionals (n = 114), the primary challenge in working with siblings was that they struggled to find siblings. Reasons for limited access to siblings included “time,” “age,” “communication,” and “family dynamics.” Professionals reported that some siblings could only be accessed during crises (e.g., a behavioral crisis for the individual with a disability, a health crisis for a parent). Family dynamics could involve the parents and siblings or just the siblings. For example, siblings may be difficult to access when there are multiple siblings who cannot agree on their roles and responsibilities for the brother/sister with IDD. In addition, professionals reported that some siblings were difficult to access because they did not understand the importance of their involvement in the service system.

Lack of sibling involvement: Poor sibling attitude

Another challenge in working with siblings was poor sibling attitude. Some professionals (34.5% and n = 76) reported that siblings were “unwilling” and “disinterested” in being involved with professionals. Specifically, some siblings did not have close relationships with their brothers and sisters; as such, they were unwilling to be involved with professionals. Perhaps conversely, some professionals reported that siblings were “over protective” of their brothers/sisters. For example, some siblings may want to control the lives of their brothers and sisters with IDD because they (the siblings) feel their brothers/sisters cannot be independent.

Systems barriers

Systems barriers were reported as challenges in working with siblings by 12.3% of professionals (n = 27); such barriers included lack of resources, insufficient insurance and funding, and the absence of support programs. Professionals reported that few national organizations and federal programs acknowledge siblings and the importance of their roles. Although professionals recognized the importance of sibling support, professionals reported that siblings were “missing” from the formal support system. Subsequently, siblings struggled to find services for their brothers and sisters.

Caregiving burden

Some professionals (8.6% or n = 19) reported challenges with siblings who were caregivers. Professionals reported that some siblings experienced “burden” and felt “stretched” into being a caregiver. Siblings struggled to manage their caregiving responsibilities and their own lives. A 48-year-old female administrator reported, “They [siblings] can be expected to take on too much responsibility in helping raise their sibling—working a full-time job and providing full-time assistance to a sibling with a disability can be incredibly taxing on an individual.” Other professionals reported that siblings experienced guilt because they could not commit to long-term support. Specifically, professionals reported that parents may encourage their children without disabilities to pursue caregiving roles; when siblings cannot be caregivers, they may experience guilt.

Discussion

In this study, the perceptions of professionals toward siblings were examined with respect to ways to encourage sibling involvement, positive experiences with siblings, and challenges to working with siblings. This study had five main findings.

First, professionals identified two ways to encourage sibling involvement: person-level and systems-level strategies. Findings indicated that a multipronged approach to encourage sibling involvement may be needed (i.e., focusing only on person- or system-level supports may be insufficient). Although some sibling literature indicates that siblings feel professionals are unresponsive and disinterested in serving siblings (Arnold, Heller, & Kramer, 2012), this study indicates that professionals not only seem to support sibling involvement but also use various strategies to encourage it.

Second, professionals reported that positive experiences with siblings included seeing the benefits siblings provided to their brothers and sisters with IDD and their close sibling relationships. Previous studies have demonstrated the positive benefits a sibling derives from a brother/sister with IDD (Burbidge & Minnes, 2014; Hodapp et al., 2010). Such positive benefits are not entirely related to the caregiving role that siblings may provide. In addition to caregiving roles, professionals reported on the impact of sibling involvement and knowledge on the individual with IDD. Thus, this study extends the literature by identifying yet another benefit of strong sibling relationships—positive experiences between professionals and siblings.

Third, professionals reported challenges in working with siblings, including lack of sibling involvement. Specifically, professionals reported lacking access to siblings. For example, professionals reported struggling to access siblings unless there was a crisis. Indeed, siblings may not become involved until their parents pass away (Holl & Morano, 2014). As professionals noted in this study, it is important for siblings to become involved before a crisis occurs. This study indicates that parents need to connect siblings with professionals before there is an emergency (e.g., a parent dies or is unable to caregive).

Fourth, the other primary challenge in working with siblings is lack of involvement due to feelings of resentment toward their brothers and sisters. Although most research indicates that siblings have positive relationships with their brothers and sisters, some siblings report negative experiences (Guse & Harvey, 2010). Given that most of the extant literature reflects the perspectives of involved siblings, we know very little about uninvolved siblings and how professionals can effectively involve them in the service delivery process. This study indicates that poor sibling attitude and, relatedly, lack of sibling involvement, is a crucial issue that needs to be addressed by future research and practitioners.

Fifth, to a lesser extent than the previous two challenges, professionals also reported challenges in working with siblings who experienced caregiving burden. Siblings may experience greater caregiving burden due to caring for their own children, aging parents, and their brothers and sisters with IDD. Parents of individuals with (versus without) IDD report that caregiving burden leads to worse psychological health (Bourke-Taylor, Howie, Law, & Pallant, 2012) and increased stress (Song & Singer, 2006). When parents experience caregiving burden, their caregiving abilities worsen (McCann, Hebert, Bienias, Morris, & Evans, 2004), which can lead to the individual with IDD needing more services (McConkey, 2005) and becoming at-risk for institutional placements (McCann et al., 2004). If siblings, like their parents, experience caregiving burden, there may be negative effects on sibling well-being as well as outcomes for the brother or sister with IDD. Thus, the challenge of professionals working with siblings who experience burden not only impacts professionals, but also siblings and their brothers and sisters with IDD.

Directions For Future Research

Future research needs to include more diverse samples of siblings of individuals with IDD. To date, with some exceptions (e.g., studies that use the Wisconsin Longitudinal Study, Orsmond & Seltzer, 2000), most sibling studies are based on convenience samples (Hodapp et al., 2005). Such studies are primarily comprised of very involved siblings—usually older sisters (e.g., Heller & Kramer, 2009; Hodapp et al., 2010). The present study indicates that some siblings have negative experiences, may not want to become involved, and are inaccessible. Thus, research needs to be conducted with siblings with varied experiences with their brothers and sisters to develop customized supports for siblings.

Additionally, research needs to be conducted to examine caregiving burden among adult siblings of individuals with IDD. Among parents of individuals with IDD, caregiving burden leads to worse well-being (Bourke-Taylor et al., 2012; Song & Singer, 2006). Siblings who fulfill caregiving roles may experience caregiving burden, and such burden may be exacerbated by a lack of systemic supports. Future research needs to examine caregiving burden among siblings of individuals with (versus without) IDD, as well as identify ways professionals can address caregiving burden among siblings.

Implications for Practice

This study has implications for practitioners with respect to ways to involve siblings. Many of the strategies for sibling involvement reported by professionals were inexpensive or free. For example, professionals could invite siblings to events and take time to build relationships with siblings. Alternatively, professionals could seek information about working with siblings of individuals with IDD. One such resource could be the Sibling Leadership Network (SLN). A national nonprofit organization, the SLN provides siblings of individuals with disabilities information, support, and tools to advocate with their brothers and sisters. The SLN website offers research-based tipsheets, position statements, and white papers about siblings of individuals with disabilities. Other resources could include the Sibling Support Project which offers books, online groups, and workshops for siblings of individuals with disabilities. Additionally, The Arc offers a sibling e-mail list about policy and advocacy efforts. Thus, professionals may want to refer siblings to such resources for education, resources, and training.

Although this study provides a foundation for understanding the perceptions of professionals toward siblings, there were a few limitations. First, this study is based on a convenience sample of professionals. Also, because of the recruitment methods (i.e., primarily using web-based recruitment) and nature of the survey (i.e., web-based survey), we may have been unable to reach participants without internet access. Second, because open-ended responses were used, member-checking or follow-up probes with participants could not be conducted. To mitigate this weakness, the data and our findings were checked by professionals. Finally, the response rate to the survey is unknown.

Even withstanding these limitations, this study offers important insights about professionals regarding sibling involvement and positive characteristics and challenges in working with siblings. As siblings fulfill greater supportive and, sometimes, caregiving roles, it is important to understand how professionals can better collaborate with siblings. This study highlighted characteristics of positive experiences of professionals working with siblings, as well as challenges in working with siblings. By understanding both the strengths and challenges in working with siblings, professionals can better support them in the future.

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Author notes

Support for this project was received by the Pennsylvania Developmental Disabilities Council and the North Carolina Developmental Disabilities Council. However, the manuscript solely reflects the opinions of the authors and not the funding agencies.