{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T12:45:26Z","timestamp":1791895526743,"version":"4.3.4"},"update-to":[{"DOI":"10.12688\/f1000research.171949.1","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T00:00:00Z","timestamp":1783900800000}}],"reference-count":49,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T00:00:00Z","timestamp":1783900800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["f1000research.com"],"crossmark-restriction":false},"short-container-title":["F1000Res"],"abstract":"<ns3:p>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\u2014who frequently assume significant caregiving and advocacy responsibilities\u2014remain 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\u201325\u00a0years 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.<\/ns3:p>","DOI":"10.12688\/f1000research.171949.2","type":"journal-article","created":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T14:54:09Z","timestamp":1783954449000},"page":"77","update-policy":"https:\/\/doi.org\/10.12688\/f1000research.crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Unseen Care, Unequal Worlds: Photovoice Narratives of Siblings Supporting Deafblind Adolescents in Indonesia"],"prefix":"10.12688","volume":"15","author":[{"given":"Hastin","family":"Trustisari","sequence":"first","affiliation":[{"name":"Department of Social Welfare, Faculty of Social and Political Sciences Depok University of Indonesia"},{"name":"Department of Social Welfare, Faculty of Business and Social Science Jakarta Universitas Binawan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fentiny","family":"Nugroho","sequence":"additional","affiliation":[{"name":"Department of Social Welfare, Faculty of Social and Political Sciences Depok University of Indonesia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dini","family":"Widinarsih","sequence":"additional","affiliation":[{"name":"Department of Social Welfare, Faculty of Social and Political Sciences Depok University of Indonesia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5196-238X","authenticated-orcid":false,"given":"Muhammad Arsyad","family":"Subu","sequence":"additional","affiliation":[{"name":"Department of Nursing, College of Health Sciences Sharjah University of Sharjah"},{"name":"Faculty of Nursing and Midwifery Jakarta Universitas Binawan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"Mottershead","sequence":"additional","affiliation":[{"name":"SEHA Al Ain Sakina, Behavioural Science Institute"},{"name":"College of Nursing Baghdad University of Baghdad"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2560","published-online":{"date-parts":[[2026,7,13]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2024.1102206","article-title":"Psychological and social consequences of deafblindness for siblings: A systematic literature review.","volume":"15","author":"M Arcous","year":"2024","journal-title":"Frontiers in Psychology."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"219-234","DOI":"10.1177\/1468794112468475","article-title":"Now I see it, now I don\u2019t: Researcher\u2019s position and reflexivity in qualitative research.","volume":"15","author":"R Berger","year":"2015","journal-title":"Qualitative 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We have assimulated your suggestions and we believe that the article is now enhanced from making the corrections.&nbsp;  kindest regards&nbsp;  Dr. Richard Mottershead","URL":"https:\/\/f1000research.com\/articles\/15-77\/v2#referee-comment-16737","order":1,"name":"referee-comment-16737","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.5256\/f1000research.203922.r501103, Shirley Dumassais, University of Montreal, Montreal, Qu\u00e9bec, 26 Aug 2026, version 2, indexed","URL":"https:\/\/f1000research.com\/articles\/15-77\/v2#referee-response-501103","order":2,"name":"referee-response-501103","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.5256\/f1000research.203922.r501102, Gro Hege Saltnes Urdal, Western Norway University of Applied Sciences, Bergen,, 24 Sep 2026, version 2, indexed","URL":"https:\/\/f1000research.com\/articles\/15-77\/v2#referee-response-501102","order":3,"name":"referee-response-501102","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.5256\/f1000research.189620.r467878, Peter Simcock, Birmingham City University, Birmingham, 16 Apr 2026, version 1, 4 approved with reservations","URL":"https:\/\/f1000research.com\/articles\/15-77\/v1#referee-response-467878","order":4,"name":"referee-response-467878","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Dr. Richard Mottershead<\/b>; \n<i>Posted: 13 Jun 2026<\/i>; Response to Reviewer 4 \u2013 Dr. Peter Simcock  We sincerely thank Dr. Simcock for his thoughtful, detailed, and highly constructive review. We greatly appreciate his recognition of the importance of focusing on sibling experiences within deafblindness research and his positive assessment of the Photovoice methodology. We have carefully considered all recommendations and have substantially revised the manuscript to improve conceptual clarity, methodological transparency, analytical depth, and written expression.  \n<b>Written expression and manuscript structure<\/b> In response to the reviewer's comments, the manuscript has undergone comprehensive editing and proofreading. Numerous grammatical, syntactical, typographical, and stylistic issues have been corrected. Ambiguous sentences have been revised for clarity, repetitive content has been removed, paragraph structure has been strengthened, and terminology has been standardized throughout. Particular attention has been given to improving readability and ensuring accurate presentation of concepts within the deafblindness literature.  \n<b>Conceptual clarification of deafblindness and transition<\/b> The Introduction has been substantially expanded and revised. We now explicitly clarify that the study focuses on adolescents with \n<b>congenital deafblindness and additional intellectual and mental disabilities<\/b>, and this distinction has been strengthened throughout the manuscript, including the title, abstract, aims, methods, findings, and discussion. Additional discussion has been included regarding the heterogeneity of deafblindness, congenital and acquired forms, communication needs, co-occurring disabilities, and support requirements. Ambiguous terminology, including references to deafblindness as \u201caxiomatic,\u201d \u201cinvisible,\u201d or \u201cthe most vulnerable,\u201d has been clarified, revised, or removed. We have also strengthened discussion of transition by adopting more consistent terminology throughout the manuscript and clarifying that the study focuses on the post-school transition to adulthood within the Indonesian context.  \n<b>Photovoice methodology and participant focus<\/b> Following the reviewer's recommendation, Photovoice is now introduced and defined earlier in the manuscript, with expanded discussion of its purpose, strengths, and suitability for exploring hidden caregiving experiences. We have clarified that the focus of the study is on siblings and their experiences rather than on the deafblind adolescents themselves. Text that could imply participant siblings were positioned as parents or that the study primarily sought to represent the voices of deafblind adolescents has been revised accordingly.  \n<b>Methodological rigor, recruitment, and reflexivity<\/b> The Methodology section has been substantially strengthened through additional detail regarding participant recruitment, eligibility criteria, consent procedures, photographic ethics, and data collection. We have expanded discussion of qualitative rigor, including credibility, dependability, confirmability, and transferability. A dedicated section on researcher positionality and reflexivity has been added, and the Data Analysis section has been revised to align more closely with contemporary understandings of reflexive thematic analysis. We have also clarified that themes were actively developed through engagement with the data rather than passively emerging from it. Additional detail has been included regarding translation of participant quotations, collaborative interpretation processes, and the role of participant reflections in thematic development.  \n<b>Findings and analysis<\/b> The Findings section has been substantially revised and strengthened. The original thematic structure has been consolidated into four stronger themes to improve conceptual coherence and analytical depth. Greater explanation has been provided regarding invisible caregiving, communication brokerage, advocacy, stigma, resilience, and transition-related responsibilities. Ambiguous examples and quotations identified by the reviewer have been clarified or corrected, and inconsistencies in theme naming and interpretation have been addressed.  \n<b>Discussion, limitations, and implications<\/b> The Discussion has been reorganized and expanded to provide greater interpretation of findings and stronger engagement with contemporary deafblindness, disability, and family research literature. The revised manuscript now incorporates Family Systems Theory, Ecological Systems Theory, and Family Resilience Theory to strengthen interpretation of sibling experiences. We have also revised the Limitations and Implications sections to ensure consistency and avoid overstatement. In particular, claims regarding the study strengthening the voice of deafblind adolescents have been revised to more accurately reflect the focus on sibling perspectives. Statements regarding gender, socioeconomic status, cultural expectations, and geographical context have also been refined to ensure alignment with the scope of the findings.  We are extremely grateful for Dr. Simcock\u2019s 'expert' review. His comments have significantly strengthened the conceptual precision, methodological rigor, analytical depth, and overall quality of the manuscript. We apologize for the length of time to complete these changes, but the modifications were substantial to meet all four reviewers' suggestions.&nbsp;  kindest regards&nbsp; Dr. Richard Mottershead","URL":"https:\/\/f1000research.com\/articles\/15-77\/v2#referee-comment-16421","order":5,"name":"referee-comment-16421","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Dr. Richard Mottershead<\/b>; \n<i>Posted: 11 Oct 2026<\/i>; Dear Dr. Simcock,&nbsp;  On behalf of the research team, may I thank you for your insightful and guiding review. We have assimulated your comments and incorporated them into an updated version. We feel that the newest version is enhanced with your support and we thank you.&nbsp;  kindest regards&nbsp;  Dr. Richard Mottershead","URL":"https:\/\/f1000research.com\/articles\/15-77\/v2#referee-comment-17394","order":6,"name":"referee-comment-17394","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"The author(s) declared that no grants were involved in supporting this work","order":7,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}