How Does Having a Sibling With a Disability Impact Quality of Life?
August 2019 Issue
In January, the parenting website Fatherly published an article titled "Brother, Sister, Rival, Friend: How Siblings Shape One Another's Lives." The article quotes a variety of experts and studies to describe ways in which our sibling relationships can impact us positively or negatively. After pointing out the research demonstrates that "having siblings profoundly affects people" but that these effects are "often negligible from a statistical standpoint," the author makes this statement: "One quirk of the sibling bond is that it leads to a disproportionate amount of strong positive and strong negative relationships."1 Most of us who have a sibling would agree "there are…few influences more meaningful than a brother or sister."1
Could chronic health conditions and disability be one of the factors that complicates the relationship between siblings?
During many pediatric encounters I've observed family dynamics, wondered how healthy siblings are impacted by their sibling's disability, and thought about how to mitigate any negative consequences for these children. This article reviews several studies that address how healthy children are affected by having a sibling with a physical disability. While the focus of most research on this subject involves health conditions not directly related to O&P, we can gain insight into our patients' family dynamics by understanding how their illness or impairment affects their siblings.
In 2014, Christine Limbers, PhD, a psychologist at Baylor University, and Sarah Skipper, BS, published a systematic review of nine studies that investigated "the health-related quality of life (HRQOL) of siblings of children with physical chronic health conditions."2 The authors define chronic illness as "a condition that is long standing and is not curable or has enduring symptoms that restrict daily activities or demand accommodations."2 The studies included children with a variety of health conditions, including diabetes, but "focused on siblings of children with cancer, epilepsy, and cystic fibrosis."2 The nine studies in the review used one of two survey-based instruments for assessing quality of life, both of which require respondents to report on various aspects of health and quality of life during the previous month. The Pediatric Quality of Life Inventory (PedsQL) includes parent-proxy report and child self-report related to physical, emotional, social, and school functioning. The Child Health Questionnaire evaluates physical function, role/social limitation, emotional/behavioral, mental health, self-esteem, behavior, bodily pain/discomfort, family activities, parent impact on time, and parent emotional impact.2 In general, the review found that "sibling HRQOL was better than that of children with a physical chronic illness" but found "mixed results when examining whether sibling HRQOL was lower than healthy children without siblings with chronic illness."2
Limbers and Skipper report, not surprisingly, that "the HRQOL of siblings of children with a greater disease severity was more negatively impacted."2 Older siblings are more at risk for impaired functioning because "younger siblings may have less capacity to pick up on stressors within the family," older siblings may be expected to take on more responsibility and limit their socialization as a result of their sibling's disability, and the perceptions of older children may be impacted by remembering a time when their sibling was not disabled.2 However, children who had a sibling with a disability were not universally found to have a lower HRQOL than those who did not have a sibling with a chronic illness. Some studies actually reported a comparable or higher HRQOL among siblings of children with a chronic illness. One researcher noted that "it is possible that siblings of children with chronic illness have a more realistic and positive understanding of what it means to be healthy."2 The authors quote another systematic review that concluded "having a sibling with a chronic illness may have some positive effects on the development of sibling personality including a more caring, warm, and empathic personality."2 One interesting finding of this review was that "parents tended to rate healthy siblings' HRQOL better than siblings self-reported their own HRQOL."2 The authors note that "parents may inadvertently overlook the adjustment of the sibling or assume the sibling is functioning well because he or she does not have a chronic illness."2 The authors point out that parents within the general population also tend to make this same overestimation of the HRQOL of their children who do not have a chronic illness. These findings demonstrate the importance of assessing the perspectives of the parents and the healthy siblings themselves.
A 2015 literature review by Knecht, Helmers, and Metzing reported on studies related to "siblings' perspectives within the familial experiences of childhood chronic illness."3 The authors' original intent was to include only studies that focused exclusively on the "experiences of growing up in a family with childhood chronic illness" from the perspective of the healthy children.3 When only one article met this criteria, the authors modified the review to include nine publications that addressed sibling experiences in some fashion to identify themes "relating to the experiences of healthy siblings."3 The authors identified the following themes in the reviewed articles: "emotional experiences, somatic complaints as bodily experiences, developmental experiences, family life experiences, everyday life experiences, and experiences in the context of siblings' illness."3 Regarding the emotional experiences of siblings, Knecht, et al. report that "siblings handle these emotions in two different ways—internalizing and externalizing."3 "Siblings are often withdrawn into themselves, fall silent, and stay in the shadows."3 Healthy siblings may receive less attention, and may be "affected by experiences of loss through lack of parental availability and time, as well as separation anxiety…they feel lonely, unimportant, displaced, neglected, and experience feelings of rejection" and may even feel "responsible for their sibling's illness."3 (See Figure 1.) Some studies found evidence of extroverted behavior, including feelings of injustice, jealousy, and envy as a consequence of "unequal distribution of parental attention, unequal application of rules, and overindulgence."3 Even when siblings can understand why this is the case they are often "unable to suppress their feelings or to avoid such thoughts."3 Other common emotional responses include anger, impatience, restlessness, overactivity, and irritability, and in some cases siblings may externalize their behavior in aggressive ways such as fighting or delinquency.3 There were inconsistent findings about the personal and social development of healthy siblings, and "the development of self-concept and self-esteem of siblings was linked partly to the type of illness of the affected" sibling.3
Related to family life experiences, Knecht et al. report increasing rivalry and loss of companionship between siblings. "Children growing up with a brother or sister affected by a chronic illness miss out on a lot of opportunities, which would be usual in a normal siblings' relationship, for example they would be able to play with their brother or sister…."3 This review also found that the effects on healthy children were not all negative. Some researchers found evidence of "personal growth, independence, and maturity" in the healthy children.3 Some healthy siblings "assume responsibility for their ill sibling" and may function as a "quasi-parent."3 The reviewers report that "siblings develop feelings of responsibility and seem to be proud of themselves when they are able to assist the ill sibling" and quote another study that reported "self-control, self-efficacy, and self-focusing" as "relevant mechanisms to cope with the situation" of "role overload."3 While there are "family disruptions that are caused by the ‘loss of normalcy'…several researchers identified an enhanced sense of togetherness in families with an ill child."3 As a family moves closer together when dealing with a chronic illness, "the family unit appears more resilient and more resourceful due to the varied experiences. Family, in this sense, means reciprocal protection and security."3
It's Not Just About the Disability
Contemporary to publication of these two reviews, two researchers published the results of a study of Australian children designed to assess "the extent of differences in well-being between siblings of children with disabilities or long-term health conditions and siblings of ‘typically developing' children…."4 The second aim of these researchers was to determine whether socioeconomic disadvantage contributed to any differences in well-being. These researchers found that while the siblings of children with disabilities "had lower well-being than their peers on some…indicators of well-being…the effect sizes were small." They found that factors related to socioeconomic challenges did impact the wellness of healthy siblings. They report that "when attempting to better understand the experiences of families supporting a child with disabilities (and the well-being of children with disabilities themselves) it is critically important to take into account the role of potentially confounding differences (especially in relation to exposure to low socioeconomic position and associated adversities) between families who are and are not supporting a child with disabilities."4 Practitioners should understand that, just as in any family system, there are many different factors that influence the quality of life of healthy siblings of children with a disability. Assuming that all challenges a family or individual member are experiencing are related to the disability of one member may cause us to ignore other important contributors to quality of life. "Our findings did indicate that, compared to their counterparts, siblings of children with disabilities or long-term health conditions are more likely to live in the most disadvantaged neighborhoods and with families experiencing financial hardship, low maternal education, more stressful life events, maternal mental health problems, and less consistent parenting. Therefore, it is likely that these pathways of disadvantage and adversity, rather than disability per se, contribute to the development of well-being difficulties among siblings."4 Failure to consider these other factors "can inadvertently reinforce the assumption implicit in many studies that any differences between families who are and are not supporting a child with disabilities must be due to the presence (and impact) of child disability, an assumption derived from the common cultural representation of disability as a tragic burden."4 Families encounter a variety of significant challenges. While experiences beyond their medical condition may be of less immediate importance to us as clinicians, understanding those other challenges can help us maintain an accurate perspective on how the disability is impacting each patient and family in unique ways.
Implications for Clinical Practice
The research reviewed in this article reaches a conclusion similar to that of the Fatherly article about sibling relationships. Having a sibling with a chronic illness or disability impacts the quality of life and well-being of healthy siblings, but these effects are not universal or automatically negative. However, "if the experiences and the resulting questions of siblings remain unknown or vague, it is also difficult to respond adequately to them."3 Families are complex relational systems, and those that include a child with a disability encounter and respond to challenges caused by that disability in a variety of ways. Limbers and Skipper observe that "the manner in which a family copes with the diagnosis will impact the HRQOL of not only the ill child, but all family members, including siblings."2 Knecht et al. observe in relation to emotional experiences that "it is important to mention that such experiences do not necessarily have to lead to the result that siblings respond to it with difficulties."3
While our primary focus during any clinical encounter is appropriately on the needs of the child who requires our professional expertise, care of our patients may improve with a deeper understanding of the sibling and family dynamics. Understanding how healthy siblings may be affected can help practitioners anticipate difficulties during encounters, provide support, and encourage constructive coping behaviors. Finding appropriate ways to integrate healthy siblings into an encounter may facilitate the provision of care and the experience of our patients.
John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center. He has more than 20 years of experience treating a wide variety of patients.
2. Limbers, C. A., and S. Skipper. 2014. Health-related quality of life measurement in siblings of children with physical chronic illness: A systematic review. Families, Systems, & Health 32(4):408.
3. Knecht, C., C. Hellmers, and S. Metzing. 2015. The perspective of siblings of children with chronic illness: A literature review. Journal of Pediatric Nursing 30(1):102-16.
4. Emerson, E., and R. Giallo. 2014. The wellbeing of siblings of children with disabilities. Research in Developmental Disabilities 35(9):2085-92.