Overview

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Siblings of People with IDD: A Look Across the Lifespan

Author(s)

Meghan Burke is an associate professor in special education at the University of Illinois at Urbana-Champaign. She may be reached at meghanbm@illinois.edu.

Chung eun Lee is a postdoctoral fellow in the Department of Pediatrics at the Vanderbilt University Medical Center, Nashville, Tennessee. She may be reached at chung.e.lee@vumc.org.

An elementary-school-age boy sitting on a bed and holding his toddler-aged younger brother with Down syndrome in his lap. The older brother is talking or singing to the younger brother.

The sibling relationship is typically the longest lasting familial relationship. When a disability is present, siblings may fill unique roles for their brothers/sisters with intellectual and developmental disabilities (IDD). Such roles may include advocates, supporters, and caregivers, to name a few. Sibling relationships and roles are shaped through a dynamic, lifelong, and reciprocal process, which includes the contributions of all family members (Cicirelli, 2013; McHale, Updegraff, & Whiteman, 2012). To have a holistic understanding of the lived experiences of siblings of individuals with IDD, it is important to examine the interaction between the life course and the experience of disability.

In this article, we will discuss the common experiences, roles, needs, and supports of siblings of individuals with IDD across the lifespan. We will also identify how experiences, roles, and needs may change over time, including the circumstances surrounding the change. Not all siblings have the same experiences as other siblings of individuals with IDD. Thus, we will try to identify certain conditions that may differentiate specific experiences. For clarity, we review the literature about siblings with respect to three life stages: childhood, adolescence, and adulthood (see Figure 1 for a synopsis of sibling needs for each life stage).

Figure 1. Sibling Support Needs Across the Lifespan

Figure 1 contains a drawing and statement of key support needs for siblings of people with IDD at each of three life stages: Childhood, Adolescence, and Adulthood. The Childhood drawing shows children jumping rope and playing with toys, and the need statement says, “More information and guidance about the disability and the support needs of brothers and sisters with IDD.” The drawing for Adolescence shows a group of four teens, one in a wheelchair, one sitting on the ground and reading, and two standing and talking. The statement of need says, “Building social support network (i.e., support group).” The drawing for Adulthood shows an adult woman standing outdoors and holding a book, and next to her is an illustration of five life domains with icons for housing, money, heart/relationships, medications, and legal planning. The need statement says, “Future planning. Understanding adult disability system. Being an advocate.”

Childhood

Experiences

In childhood, regardless of whether a disability is present, young siblings spend most of their time at home with one another. Perhaps because of such sibling closeness (both in terms of proximity and time), the bulk of research has examined young siblings of individuals with IDD rather than older ages. In a review of such literature, Rossiter & Sharpe (2001) found that any negative effect of having a brother/sister with IDD was negligible. Their analysis reflects the mixed research findings about the effects of individuals with IDD on their siblings. Specifically, some studies report positive adjustment, other studies report negative adjustment, and, still further, some studies report no differences between siblings of children with and without IDD (e.g., Fisman et al., 1996; Meadan et al., 2010; Petalas et al., 2009; Pilowsky et al., 2004). With respect to possible positive effects, some research has found that having a brother/sister with IDD enables siblings to learn patience, kindness and supportiveness; acceptance of differences; compassion and helpfulness; empathy for others; and insight into coping with challenges (Petalas et al., 2009, 2012).

On the other hand, some research has found negative effects including feelings of jealousy toward the attention their brother/sister receives; anger over a lack of attention the sibling receives; resentment of having to explain, support, and/or take care of their brother/sister; embarrassment about the behavior of their brother or sister; and guilt (Roeyers & Mycke, 1995).

Roles

In childhood, siblings may already be fulfilling or anticipating caregiving roles in relation to their brothers or sisters with IDD, which is often referred to as “parentification.” In a sample of 45 young siblings, 80% of siblings reported that they would be the person most responsible for taking care of their brother/sister with IDD in the future (Eisenberg et al. 1998). Other research has suggested that young siblings may serve as interventionists or teachers for their brothers/sisters with IDD (Shivers & Plavnick, 2015).

Needs and Supports

Many young siblings report receiving limited information and guidance about the disability and support needs of their brother/sister with IDD (Conway & Meyer, 2008). Thankfully, there is an internationally renowned program named “Sibshops” (Meyer & Vedasy, 2007). Sibshops use a group model wherein young siblings, ages 8 to 13, can share their feelings and experiences with other siblings of individuals with IDD. Although there is limited research about the effectiveness of the Sibshops model, it has been widely used throughout the world to support young siblings (Meyer & Vedasy, 2007).

A middle-school-aged brother and sister riding their bikes and smiling at each other.

Adolescence

Experiences

Overall, as siblings become adolescents there is often reduced positivity toward their brothers/sisters with IDD, time spent with each other, and mutual interest (Petalas et al., 2012). Further, adolescent siblings start to become aware of the social aspects of disability, which often makes adolescent siblings wary of the reactions of their peers towards their brothers/sisters with IDD. For example, adolescent siblings may be anxious about how they tell friends about their brothers/sisters with IDD (Petalas et al., 2012). In an interview study with 19 adolescent siblings, 89% of siblings reported that others do not accept their brothers/sisters with IDD (Opperman & Alant, 2003).

As with childhood, adolescence brings positive and negative sibling experiences. For example, due to their brothers/sisters with IDD, adolescent siblings report increased tolerance, understanding of disability, and diversity, and shared moments of fun and pleasure (Meyer & Holl, 2014). On the other hand, adolescent siblings of individuals with (versus without) IDD also report increased pity, anxiety, and guilt (Shivers & Dykens, 2017; Opperman & Alant, 2003).

Roles

Similar to childhood, adolescent siblings fulfill a variety of roles in relation to their brothers/sisters with IDD. Such roles may include:

  • Protectors of their brothers/sisters with IDD (Benderix & Sivberg, 2007; Petalas et al., 2012).
  • Providers of respite to their parents by taking care of their brothers/sisters with IDD at home (Petalas et al., 2009).
  • Advocates in family-school partnerships for their brothers/sisters with IDD (Hagiwara et al., 2018).

Needs and Supports

Adolescent siblings report needing to understand the nature and consequences of the disability of their brothers and sisters (Opperman & Alant, 2003). In addition, adolescent siblings report feeling lonely and isolated as their peers may not understand their experiences as siblings of individuals with IDD (Opperman & Alant, 2003). To address these needs, adolescent siblings may benefit from broadening their social support network. By providing a support group with similarly aged adolescent siblings, siblings may provide peer support to each other.

Two adult sisters cooking together.

Adulthood

Experiences

Compared with childhood and adolescence, adult siblings report more involvement in the lives of their brothers/sisters with IDD, especially as their parents age. Simultaneously, adult siblings experience their own life events (e.g., attending college, getting married, having children). Consequently, siblings may struggle with juggling multiple responsibilities. Adult siblings are often referred to as the “club sandwich generation” as they may not only care for their brothers/sisters with IDD, but also for their aging parents and, potentially, their own offspring (Hodapp, Sanderson, Meskis, & Casale, 2017).

With respect to relationships, most adult siblings report positive sibling relationships (Rossetti & Hall, 2015). When siblings live far away from one another, however, they may have less close relationships (Rossetti & Hall, 2015). As a result, adult siblings may report feelings of guilt for not spending time together (Rossetti & Hall, 2015). In a national survey completed by 1,021 adult siblings, more than 50% of siblings reported feeling guilt (Shivers, 2019).

Roles

The most commonly discussed role of adult siblings is that of caregiver. Caregiving may include securing residential arrangements, conducting financial arrangements, having legal guardianship, interacting with the service delivery system, and providing companionship (Burke et al., 2012). From a national survey, almost 87% of siblings planned to engage in some caregiving for their brothers/sisters with IDD (Lee, in press). Notably, not all siblings become caregivers. For example, Avieli and colleagues (2019) found that some siblings are estranged from their brothers/sisters with IDD. Other adult sibling roles may include friend, advocate, legal representative, sibling, leisure planner, informal service coordinator (Hall & Rossetti, 2018).

Needs and Supports

From a national survey conducted by the Sibling Leadership Network in 2015, siblings were asked about the types of support they need and the types of support they receive (see Figure 2). Although siblings reported a variety of needed supports, there was a big gap between their needs and actual supports received. For example, only 25% of adult siblings received supports regarding the adult service disability system despite 80% of adult siblings reporting needing this support (Lee, Burke & Arnold, under review).

Figure 2. Needed and Received Supports Among Adult Siblings of Individuals with IDD

The bar graph compares percent of support received and support needed for siblings in eight life areas: Future planning, navigating adult service system, mentor, person-centered planning, in-person support group, materials about caregiving, internet support group, and policy making. In each of these areas the level of support needed approaches or exceeds twice the level of support received.

Source: Data from Lee, Burke & Arnold (under review)

Above all, given their greater involvement in caregiving, most adult siblings desire to participate in future planning with their families (Lee et al., 2019). Future planning is critical for siblings to become advocates before a crisis occurs. To address the needs of siblings, researchers have developed and tested future planning trainings. For example, Lee and Burke (2019) developed a future planning training that targeted adult siblings of individuals with IDD. Participants in the training demonstrated significantly greater knowledge about adult disability services, problem-solving skills, and future planning activities.

Conclusion

Overall, there is limited information about the experiences and needs of siblings of individuals with IDD across the lifespan. Longitudinal research could identify variables and procure essential information to develop supports for siblings (Hastings, 2007). Indeed, given the important roles of siblings, more research needs to explore the lived experiences of siblings of individuals with IDD. 

References

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