{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T23:36:48Z","timestamp":1781825808235,"version":"3.54.5"},"reference-count":36,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2024,9,16]],"date-time":"2024-09-16T00:00:00Z","timestamp":1726444800000},"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":["Qual Health Res"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:p>Parent-carers of children with rare diseases, including osteogenesis imperfecta (OI), represent a vulnerable and largely invisible population. Despite existing research on familial OI caregiving, the unique experiences, perspectives, and feelings of parent-carers remain poorly understood, prompting this study to delve into these aspects through the subjective lens of voices. The aim of this study was to explore the voices of parent-carers in navigating the complexities of pediatric OI care. Employing a narrative design informed by social constructionism, 15 parent-carers of pediatric OI patients were purposively sampled from a tertiary hospital in Shandong Province, China, between May and August 2021. Individual face-to-face interviews were conducted, and data were analyzed using the voice-centered relational approach followed by thematic analysis. Parent-carers\u2019 narratives revealed two overarching themes. The first theme, \u201cthe all-encompassing caregiver role,\u201d highlighted the profound internal transformation parent-carers underwent, with three key aspects of experiences: \u201cthe centrality of care,\u201d \u201clife on hold,\u201d and \u201cguarded silence.\u201d The second theme, \u201cnavigating ambivalence,\u201d captured the complex psycho-emotional journey of parent-carers as they balanced denial and acceptance, experienced the burden and responsibility of caregiving, navigated uncertainty with hope, and sought to normalize the care recipients\u2019 experiences while acknowledging their unique needs. Our findings suggest the need for developing tailored support strategies that address not only practical challenges but also the psychosocial dimensions of caregiving, to effectively assist and empower this marginalized carer population.<\/jats:p>","DOI":"10.1177\/10497323241272020","type":"journal-article","created":{"date-parts":[[2024,9,17]],"date-time":"2024-09-17T07:31:51Z","timestamp":1726558311000},"page":"640-649","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Voices of Parent-Carers Navigating the Care for Children With Osteogenesis Imperfecta"],"prefix":"10.1177","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1372-7669","authenticated-orcid":false,"given":"Yaping","family":"Zhong","sequence":"first","affiliation":[{"name":"School of Nursing and Midwifery, Monash University, Clayton, VIC, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Huan","family":"Zhao","sequence":"additional","affiliation":[{"name":"College of Public Health, Medical &amp; Veterinary Sciences, James Cook University, Townsville, QLD, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xinyi","family":"Wang","sequence":"additional","affiliation":[{"name":"School of Nursing, Shandong First Medical University and Shandong Academy of Medical Sciences, Jinan, Shandong, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Min","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Paediatric Orthopaedics, Shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, Shandong, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lili","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Nursing, Shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, Shandong, China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8033-8145","authenticated-orcid":false,"given":"Ji","family":"Ji","sequence":"additional","affiliation":[{"name":"Department of Nursing, Shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, Shandong, China"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,9,16]]},"reference":[{"issue":"7","key":"e_1_3_5_2_1","first-page":"764","article-title":"Difficulties experienced by caregivers of patients diagnosed with osteogenesisimperfecta (OI): Example of a hospital","volume":"65","author":"Arabaci L. 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