Futural anxiety and expectations of siblings of individuals with severe and multiple disabilities.
Adult siblings of people with severe disabilities are anxious, untrained, and unsupported caregivers who need immediate services.
01Research in Context
What this study did
Researchers talked to 12 adult brothers and sisters of people with severe and multiple disabilities.
They used long interviews to learn how these siblings feel about the future.
All siblings were between 25 and 65 years old and expected to keep caring for their brother or sister for life.
What they found
Every sibling felt deep worry about the future.
They feared who would care for their disabled brother or sister when parents die.
They also felt no one had trained them or offered mental-health help for this lifelong job.
How this fits with other research
Pavlopoulou et al. (2019) showed that teenage sisters of autistic kids already feel like lonely fighters. Eldeniz-Çetin et al. (2026) now shows the same feeling lasts into adulthood.
Lovell et al. (2016) counted more depressive symptoms in autism siblings. The new study explains why: the fear never goes away and no one teaches coping skills.
Siklos et al. (2007) found parents wait three years for an autism diagnosis. Eldeniz-Çetin et al. (2026) shows siblings wait decades for any support at all.
Together these papers map a clear path: childhood stress becomes adult anxiety when services ignore siblings.
Why it matters
If you serve adults with severe disabilities, ask about their siblings. Offer sibling training nights, respite vouchers, and a list of therapists who understand caregiver trauma. One hour of support now can prevent decades of silent stress.
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02At a glance
03Original abstract
INTRODUCTION: Adult siblings often assume vital, long-term roles in supporting individuals with Severe and Multiple Disabilities in areas such as education, healthcare, and daily care. These responsibilities, while significant, are accompanied by emotional challenges, including anxiety and stress, which necessitate a deeper understanding to develop effective support systems. OBJECTIVES: This study aimed to explore the emotional experiences, future expectations, and caregiving responsibilities of adult siblings of individuals with Severe and Multiple Disabilities, specifically investigating their anxieties, expectations, and the roles they assume. METHODS: A qualitative study using Interpretative Phenomenological Analysis was conducted. Twelve adult siblings of individuals with Severe and Multiple Disabilities participated in semi-structured interviews. Data were analysed to capture in-depth the lived experiences and personal meanings participants attribute to their roles. RESULTS: The analysis revealed three main themes: (1) Anxieties, with sub-themes of concerns related to education, independent living, care and health, and employment/leisure; (2) Expectations, with sub-themes of desires for systemic support in education, healthcare, independent living, and employment/leisure; and (3) Responsibilities, with sub-themes encompassing developmental support (e.g., educational help, care tasks) and the personal impact of these duties (e.g., internal conflict, social isolation, life choices). Participants reported that their involvement was essential but often led to emotional strain as they navigated balancing their own lives with their caregiving roles. CONCLUSION: The findings underscore that adult siblings are central yet vulnerable figures in the long-term care network for individuals with Severe and Multiple Disabilities. The study highlights a critical need for proactive, systemic support, including sibling-focused training, mental health resources, and inclusive policies, to mitigate anxieties, meet expectations, and sustainably empower siblings in their crucial roles. This contributes to a more nuanced understanding necessary for informing family-centered practices and policies. What this paper adds The findings underscore that adult siblings are central figures in the long-term care and support of individuals with severe disabilities. While their contributions are indispensable, insufficient institutional and emotional support can increase their stress and anxiety. Strengthening community and policy-based support mechanisms is critical to enhancing both sibling well-being and the quality of care provided to individuals with disabilities.
Research in developmental disabilities, 2026 · doi:10.1016/j.ridd.2025.105183