{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,20]],"date-time":"2026-09-20T23:55:30Z","timestamp":1789948530117,"version":"4.0.1"},"reference-count":30,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2013,6,10]],"date-time":"2013-06-10T00:00:00Z","timestamp":1370822400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Health Care"],"published-print":{"date-parts":[[2014,9]]},"abstract":"<jats:p>Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS ( n\u00a0=\u00a07) and Batten Disease ( n\u00a0=\u00a01) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother\u2019s or sister\u2019s condition and the emotional sequelae of disease progression. Exploration of siblings\u2019 experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.<\/jats:p>","DOI":"10.1177\/1367493513485825","type":"journal-article","created":{"date-parts":[[2013,6,11]],"date-time":"2013-06-11T00:19:12Z","timestamp":1370909952000},"page":"230-240","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":39,"title":["A relational understanding of sibling experiences of children with rare life-limiting conditions"],"prefix":"10.1177","volume":"18","author":[{"given":"Cari","family":"Malcolm","sequence":"first","affiliation":[{"name":"School of Nursing, Midwifery and Health, University of Stirling, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Faith","family":"Gibson","sequence":"additional","affiliation":[{"name":"Great Ormond Street Hospital and London South Bank University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sally","family":"Adams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gillian","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liz","family":"Forbat","sequence":"additional","affiliation":[{"name":"Cancer Care Research Centre (CCRC), School of Nursing, Midwifery and Health, University of Stirling, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2013,6,10]]},"reference":[{"key":"bibr1-1367493513485825","volume-title":"A Guide to the Development of Children\u2019s Palliative Care Services","author":"ACT\/RCPCH","year":"2009"},{"key":"bibr2-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1093\/hsw\/33.3.199"},{"key":"bibr3-1367493513485825","volume-title":"Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis","author":"Charmaz K","year":"2006"},{"key":"bibr4-1367493513485825","volume-title":"Research with Children: Perspectives and Practices","author":"Christensen P","year":"2000"},{"key":"bibr5-1367493513485825","first-page":"202","volume-title":"Youth Policy and Social Inclusion: Critical Debates with Young People","author":"Dearden C","year":"2005"},{"key":"bibr6-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1177\/070674370004500406"},{"key":"bibr7-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.316.7124.49"},{"key":"bibr8-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1207\/s15326888chc3301_5"},{"key":"bibr9-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1093\/hsw\/33.2.121"},{"key":"bibr10-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.1994.tb00393.x"},{"key":"bibr11-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1016\/S1364-9825(97)80512-3"},{"key":"bibr12-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2005.00459.x"},{"key":"bibr13-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01266.x"},{"key":"bibr14-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsh032"},{"key":"bibr15-1367493513485825","volume-title":"Researching Children\u2019s Perspectives","author":"Lewis A","year":"2000"},{"key":"bibr16-1367493513485825","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9604.2007.00365.x"},{"key":"bibr17-1367493513485825","unstructured":"Malcolm C, Adam S, Anderson G, et al. 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