Healthy Siblings of Children Living With Chronic Diseases: A Systematic Review

Purpose: Approximately 26% of children in the United States live with a chronic disease or condition and this number is rising, especially among children experiencing social or economic disparities (Price, Khubchandani, McKinney, & Braun, 2013; Spencer, Blackburn, & Read, 2015). Unpleasant symptoms, lower quality of life, and missed school are a few of the experiences for children living with chronic diseases or conditions (Varni, Limbers, & Burwinkle, 2007). Most models of care delivery and research have centered on the health and welfare of the child with the chronic disease or condition. What is not clear, however, are the physical and psychosocial effects of healthy siblings who are in a family with a sibling who has a chronic disease or condition and what interventions are needed, if any, for this group. Few investigators have examined the healthy siblings in the family unit. To date, most of the research on healthy siblings has been about the perceptions and experiences around end of life and bereavement after a death (Gaab, Owens, & MacLeod, 2014; Wallin, Steineck, Nyberg, & Kreicbergs, 2016). The purpose of this systematic review, therefore, is to examine the scientific literature in regard to these physical and psychosocial effects on the healthy siblings.

Methods: Using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA, 2015)  guidelines, a literature search was performed in CINAHL, OVID Medline, and PsychInfo. Keywords used were: “sibling burden”, “healthy sibling”, “sibling survivor”, “sibling guilt”, “neurotypical sibling”, “surviving sibling”, and “chronic disease”. Limits for the search included: 1) peer-reviewed research reports, systematic review, or meta-analyses; 2) published within the past 10 years; and a 3) pediatric population. To date, a total of 137 abstracts were found. Two researchers are examining the abstracts for inclusion in the review. Interrater reliability will be obtained for level of agreement for inclusion abstracts. Associated articles will be retrieved and reviewed by the study authors. Articles that qualify for this systematic review will be analyzed for demographic information, type of chronic disease/condition of the affected sibling, and associated physical or psychosocial effects/consequences experienced by the healthy sibling(s) within the family unit.

Results: The review is currently in progress. We anticipate the review will be completed by April 2017.

Conclusion: Recommendations will be made for future research and, if applicable, clinical practice to promote healthy outcomes for siblings living with children who have chronic diseases or conditions.