Research in developmental disabilities · 2026
"A positive experience over a negative one": Stress, coping, and the experiences of adult siblings of intellectually and/or developmentally disabled individuals.
СтатьяНазвание и аннотация: Перевод в очереди
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Abney Miles C, Patney Rhea, Boles Jessika C
Аннотация
BACKGROUND: Millions of children worldwide are living with intellectual and developmental disabilities, with the many family members who love and care for them also impacted by their unique strengths, challenges, and needs. However, little is known about this experience from the vantage point of siblings.
AIM: To explore the stress and coping experiences of adult siblings of intellectually and/or developmentally disabled individuals, while identifying opportunities for enhancing family-centered care.
METHODS AND PROCEDURES: This explanatory, sequential mixed-methods study was conducted in two phases: first, electronic administration of the Coping Resources Inventory, the Brief Coping Orientation to Problems Experienced Inventory, and the Perceived Stress Scale; and second, completion of an optional 1-hour semi-structured interview.
OUTCOMES AND RESULTS: 27 adult siblings of intellectually and/or developmentally disabled people completed Phase 1 data collection, and 13 participants additionally completed Phase 2. Participants most frequently reported use of Self-Blame, Instrumental Support, and Acceptance coping styles, and, overall, emotional and social coping resource types were most frequently endorsed. Interview responses produced four themes: 1) caretaking across the lifespan, 2) negotiating normalcy in and outside the household, 3) parental transparency about sibling diagnosis and 4) reframing the sibling experience.
CONCLUSIONS: Taken together, the results of this study suggest that providers, clinicians, and caregivers can better support siblings of intellectually and/or developmentally disabled individuals by recognizing their unique stressors and experiences, helping them to negotiate a sense of normalcy, and meeting their coping preferences and needs.
AIM: To explore the stress and coping experiences of adult siblings of intellectually and/or developmentally disabled individuals, while identifying opportunities for enhancing family-centered care.
METHODS AND PROCEDURES: This explanatory, sequential mixed-methods study was conducted in two phases: first, electronic administration of the Coping Resources Inventory, the Brief Coping Orientation to Problems Experienced Inventory, and the Perceived Stress Scale; and second, completion of an optional 1-hour semi-structured interview.
OUTCOMES AND RESULTS: 27 adult siblings of intellectually and/or developmentally disabled people completed Phase 1 data collection, and 13 participants additionally completed Phase 2. Participants most frequently reported use of Self-Blame, Instrumental Support, and Acceptance coping styles, and, overall, emotional and social coping resource types were most frequently endorsed. Interview responses produced four themes: 1) caretaking across the lifespan, 2) negotiating normalcy in and outside the household, 3) parental transparency about sibling diagnosis and 4) reframing the sibling experience.
CONCLUSIONS: Taken together, the results of this study suggest that providers, clinicians, and caregivers can better support siblings of intellectually and/or developmentally disabled individuals by recognizing their unique stressors and experiences, helping them to negotiate a sense of normalcy, and meeting their coping preferences and needs.