Unseen Care, Unequal Worlds: Photovoice Narratives of Siblings Supporting Deafblind Adolescents in Indonesia.

BACKGROUND

Congenital deafblindness is a rare and complex condition characterised by combined hearing and vision impairment, frequently accompanied by additional intellectual, developmental, and psychosocial disabilities. Adolescents with deafblindness often encounter substantial challenges during the transition from school to adulthood, particularly in low-resource settings where formal disability services are limited. While existing research has predominantly focused on parental experiences, the perspectives of siblings-who frequently assume significant caregiving and advocacy responsibilities-remain underrepresented, especially within family-centred contexts such as Indonesia.

AIM: To explore the lived experiences and caregiving roles of siblings supporting adolescents with congenital deafblindness and additional intellectual and mental disabilities during post-school transition in rural and urban Indonesia.

METHODS

A qualitative participatory Photovoice design was employed. Eight siblings aged 15-25 years were purposively recruited through special education schools in rural and urban Indonesia. Over a 12-week period, participants documented their caregiving experiences through photography, semi-structured interviews, and focus group discussions. Data were analysed using reflexive thematic analysis.

RESULTS

Four interconnected themes were identified: (1) invisible caregiving and role transformation; (2) emotional burden, resilience, and uncertain futures; (3) geography, stigma, and unequal support systems; and (4) siblings as communication brokers and hidden advocates. Across both rural and urban settings, siblings undertook extensive caregiving, advocacy, and emotional support responsibilities that were largely unrecognised within formal transition planning. Urban participants described tensions between education, employment, and caregiving demands, whereas rural participants reported stronger kinship support alongside limited access to specialist services and persistent disability stigma.

CONCLUSIONS

Siblings play a critical yet frequently overlooked role in supporting adolescents with congenital deafblindness during post-school transition. Caregiving experiences were shaped by the interaction of geographical context, cultural expectations, family structures, and service availability. The findings position siblings as critical yet frequently overlooked contributors to transition support and extend current understanding of deafblindness by foregrounding sibling perspectives within a low-resource, family-centred context. Greater recognition of sibling caregiving within disability policy, transition planning, and family-centred interventions is required. Future longitudinal and cross-cultural research is required to better understand how sibling roles evolve across the life-course and across diverse care contexts.