{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T10:20:29Z","timestamp":1782987629758,"version":"3.54.5"},"reference-count":46,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","pediatricnursing.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Nursing"],"published-print":{"date-parts":[[2025,5]]},"DOI":"10.1016\/j.pedn.2025.02.015","type":"journal-article","created":{"date-parts":[[2025,3,5]],"date-time":"2025-03-05T12:22:00Z","timestamp":1741177320000},"page":"65-74","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"special_numbering":"C","title":["Exploring the experiences of parents of children with Duchenne muscular dystrophy in Turkey: A descriptive phenomenological study"],"prefix":"10.1016","volume":"82","author":[{"given":"Ebru","family":"Bakir","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sevilay Ergun","family":"Arslanli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"1\u20132","key":"10.1016\/j.pedn.2025.02.015_bb0005","first-page":"311","article-title":"Identifying challenges of children and families affected by rare disease: A scoping review","volume":"81","author":"Bendixen","year":"2017","journal-title":"Pediatric Research"},{"issue":"6","key":"10.1016\/j.pedn.2025.02.015_bb0010","doi-asserted-by":"crossref","first-page":"2460","DOI":"10.1007\/s12325-024-02867-0","article-title":"\u201cyou take this day by day, come what may\u201d: A qualitative study of the psychosocial impacts of living with Duchenne muscular dystrophy","volume":"41","author":"Bever","year":"2024","journal-title":"Advances in Therapy"},{"issue":"3","key":"10.1016\/j.pedn.2025.02.015_bb0015","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1016\/S1474-4422(18)30024-3","article-title":"Diagnosis and management of Duchenne muscular dystrophy, part 1: Diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management","volume":"17","author":"Birnkrant","year":"2018","journal-title":"The Lancet Neurology"},{"key":"10.1016\/j.pedn.2025.02.015_bb0020","doi-asserted-by":"crossref","first-page":"1780","DOI":"10.3389\/fpsyg.2019.01780","article-title":"The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions","volume":"10","author":"Cardinali","year":"2019","journal-title":"Frontiers in Psychology"},{"key":"10.1016\/j.pedn.2025.02.015_bb0025","series-title":"Five ways of doing qualitative analysis: Phenomenological psychology, grounded theory, discourse analysis, narrative research, and intuitive inquiry","first-page":"165","article-title":"A constructivist grounded theory analysis of losing and regaining a valued self","author":"Charmaz","year":"2011"},{"issue":"5","key":"10.1016\/j.pedn.2025.02.015_bb0030","first-page":"627","article-title":"Gender differences in caring for children with genetic or rare diseases: A mixed-methods study","volume":"9","author":"Chu","year":"2022","journal-title":"Children (Basel, Switzerland)"},{"key":"10.1016\/j.pedn.2025.02.015_bb0035","series-title":"Convention on the rights of the child","year":"1989"},{"key":"10.1016\/j.pedn.2025.02.015_bb0040","series-title":"Designing and conducting mixed method research","author":"Creswell","year":"2011"},{"issue":"19","key":"10.1016\/j.pedn.2025.02.015_bb0045","doi-asserted-by":"crossref","first-page":"5450","DOI":"10.1080\/09638288.2021.1936221","article-title":"Development of clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy","volume":"44","author":"Davidson","year":"2021","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"10.1016\/j.pedn.2025.02.015_bb0050","first-page":"265","article-title":"Parental experiences of managing the care of children with Duchenne muscular dystrophy: A systematic review and thematic synthesis","volume":"44","author":"Donnelly","year":"2022","journal-title":"Disability and Rehabilitation"},{"key":"10.1016\/j.pedn.2025.02.015_bb0055","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1038\/s41572-021-00248-3","article-title":"Duchenne muscular dystrophy","volume":"7","author":"Duan","year":"2021","journal-title":"Nature Reviews Disease Primers"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0060","first-page":"208","article-title":"Duchenne Musk\u00fcler Distrofili \u00c7ocuklar\u0131n Bak\u0131m\u0131nda Ailelerin Ya\u015fad\u0131klar\u0131 Sorunlar\u0131n De\u011ferlendirilmesi: Bir Nitel \u00c7al\u0131\u015fma","volume":"25","author":"Gencer","year":"2022","journal-title":"Journal of Nursology"},{"key":"10.1016\/j.pedn.2025.02.015_bb0065","doi-asserted-by":"crossref","DOI":"10.1016\/j.socscimed.2021.114523","article-title":"Sample sizes for saturation in qualitative research: A systematic review of empirical tests","volume":"292","author":"Hennink","year":"2022","journal-title":"Social Science & Medicine (1982)"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0070","doi-asserted-by":"crossref","first-page":"483","DOI":"10.1177\/1359105309355491","article-title":"Social comparison within self-help groups: Views of parents of children with Duchenne muscular dystrophy","volume":"15","author":"Hodges","year":"2010","journal-title":"Journal of Health Psychology"},{"issue":"10","key":"10.1016\/j.pedn.2025.02.015_bb0075","doi-asserted-by":"crossref","first-page":"987","DOI":"10.1111\/dmcn.13934","article-title":"Duchenne muscular dystrophy and caregiver burden: A systematic review","volume":"60","author":"Landfeldt","year":"2018","journal-title":"Developmental Medicine and Child Neurology"},{"issue":"5","key":"10.1016\/j.pedn.2025.02.015_bb0080","doi-asserted-by":"crossref","first-page":"906","DOI":"10.1007\/s00415-016-8080-9","article-title":"Quantifying the burden of caregiving in Duchenne muscular dystrophy","volume":"263","author":"Landfeldt","year":"2016","journal-title":"Journal of Neurology"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0085","first-page":"340","article-title":"Dealing with uncertainty in Duchenne muscular dystrophy: parents\u2019 decisions about their child\u2019s care","volume":"32","author":"Lindsay","year":"2017","journal-title":"Journal of Child Neurology"},{"issue":"10","key":"10.1016\/j.pedn.2025.02.015_bb0090","doi-asserted-by":"crossref","first-page":"3081","DOI":"10.1590\/1413-812320152110.20302016","article-title":"Fatherhood: Experiences of fathers of boys diagnosed with Duchenne muscular dystrophy","volume":"21","author":"Lucca","year":"2016","journal-title":"Ci\u00eancia & Sa\u00fade Coletiva"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0095","doi-asserted-by":"crossref","first-page":"481","DOI":"10.1177\/21676968241242154","article-title":"Young adults and parents\u2019 coping with Duchenne\/Becker muscular dystrophy: A focus group study","volume":"12","author":"Makhoul Khoury","year":"2024","journal-title":"Emerging Adulthood"},{"issue":"10124","key":"10.1016\/j.pedn.2025.02.015_bb0100","doi-asserted-by":"crossref","first-page":"451","DOI":"10.1016\/S0140-6736(17)32160-8","article-title":"Long-term effects of glucocorticoids on function, quality of life, and survival in patients with Duchenne muscular dystrophy: A prospective cohort study","volume":"391","author":"McDonald","year":"2018","journal-title":"The Lancet"},{"issue":"2","key":"10.1016\/j.pedn.2025.02.015_bb0105","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1080\/10852352.2019.1624352","article-title":"Challenging gender perspective in the community to promote well-being and health","volume":"48","author":"Migliorini","year":"2020","journal-title":"Journal of Prevention & Intervention in the Community"},{"issue":"2","key":"10.1016\/j.pedn.2025.02.015_bb0110","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1038\/s41431-019-0508-0","article-title":"Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database","volume":"28","author":"Nguengang Wakap","year":"2020","journal-title":"European Journal of Human Genetics: EJHG"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0115","doi-asserted-by":"crossref","first-page":"709","DOI":"10.1007\/s00415-017-8406-2","article-title":"Predictors of health-related quality of life in boys with Duchenne muscular dystrophy from six European countries","volume":"264","author":"Otto","year":"2017","journal-title":"Journal of Neurology"},{"issue":"5","key":"10.1016\/j.pedn.2025.02.015_bb0120","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1007\/s10488-013-0528-y","article-title":"Purposeful sampling for qualitative data collection and analysis in mixed method implementation research","volume":"42","author":"Palinkas","year":"2015","journal-title":"Administration and Policy in Mental Health"},{"issue":"3","key":"10.1016\/j.pedn.2025.02.015_bb0125","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1016\/j.ejpn.2004.01.009","article-title":"Developmental progress in Duchenne muscular dystrophy: Lessons for earlier detection","volume":"8","author":"Parsons","year":"2004","journal-title":"European Journal of Paediatric Neurology"},{"key":"10.1016\/j.pedn.2025.02.015_bb0130","series-title":"Qualitative research and evaluation methods","author":"Patton","year":"2002"},{"issue":"4","key":"10.1016\/j.pedn.2025.02.015_bb0135","doi-asserted-by":"crossref","first-page":"475","DOI":"10.1016\/j.dhjo.2015.03.009","article-title":"The supportive care needs of parents with a child with a rare disease: A qualitative descriptive study","volume":"8","author":"Pelentsov","year":"2015","journal-title":"Disability and Health Journal"},{"issue":"3","key":"10.1016\/j.pedn.2025.02.015_bb0140","doi-asserted-by":"crossref","first-page":"e207","DOI":"10.1016\/j.pedn.2015.10.022","article-title":"The supportive care needs of parents with a child with a rare disease: A qualitative descriptive study","volume":"31","author":"Pelentsov","year":"2016","journal-title":"Journal of Pediatric Nursing"},{"issue":"1","key":"10.1016\/j.pedn.2025.02.015_bb0145","doi-asserted-by":"crossref","first-page":"P33","DOI":"10.1093\/geronb\/61.1.P33","article-title":"Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis","volume":"61","author":"Pinquart","year":"2006","journal-title":"The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences"},{"issue":"6","key":"10.1016\/j.pedn.2025.02.015_bb0150","first-page":"750","article-title":"Parents\u2019 involvement in their children\u2019s cancer care: Review of the evidence","volume":"19","author":"Plumridge","year":"2010","journal-title":"European Journal of Cancer Care"},{"issue":"2","key":"10.1016\/j.pedn.2025.02.015_bb0155","first-page":"198","article-title":"Experiences of parents of children with Duchenne muscular dystrophy in Norway: A qualitative study","volume":"23","author":"Saetrang","year":"2019","journal-title":"Journal of Child Health Care"},{"issue":"1","key":"10.1016\/j.pedn.2025.02.015_bb0160","first-page":"31","article-title":"Natural history of Duchenne muscular dystrophy. Quebec database of pediatric DMD","volume":"36","author":"Samson","year":"2009","journal-title":"The Canadian Journal of Neurological Sciences"},{"key":"10.1016\/j.pedn.2025.02.015_bb0165","series-title":"Nadir Hastal\u0131klar Raporu","author":"Satman","year":"2019"},{"issue":"1","key":"10.1016\/j.pedn.2025.02.015_bb0170","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s13023-014-0210-9","article-title":"Comparative cost of illness analysis and assessment of health care burden of Duchenne and Becker muscular dystrophies in Germany","volume":"9","author":"Schreiber-Katz","year":"2014","journal-title":"Orphanet Journal of Rare Diseases"},{"issue":"7","key":"10.1016\/j.pedn.2025.02.015_bb0175","doi-asserted-by":"crossref","first-page":"1968","DOI":"10.1111\/jan.15244","article-title":"Examining characteristics of descriptive phenomenological nursing studies: A scoping review","volume":"78","author":"Shorey","year":"2022","journal-title":"Journal of Advanced Nursing"},{"issue":"3","key":"10.1016\/j.pedn.2025.02.015_bb0180","doi-asserted-by":"crossref","first-page":"733","DOI":"10.1002\/nop2.275","article-title":"Qualitative thematic analysis based on descriptive phenomenology","volume":"6","author":"Sundler","year":"2019","journal-title":"Nursing Open"},{"key":"10.1016\/j.pedn.2025.02.015_bb0185","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1186\/s13030-020-00201-y","article-title":"The psychosocial profile of family caregivers of children with chronic diseases: A cross-sectional study","volume":"14","author":"Toledano-Toledano","year":"2020","journal-title":"BioPsychoSocial Medicine"},{"issue":"6","key":"10.1016\/j.pedn.2025.02.015_bb0190","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"International Journal for Quality in Health Care"},{"key":"10.1016\/j.pedn.2025.02.015_bb0195","author":"U.S. Food and Drug Administration"},{"key":"10.1016\/j.pedn.2025.02.015_bb0205","series-title":"Duchenne muscular dystrophy","author":"Venugopal","year":"2023"},{"key":"10.1016\/j.pedn.2025.02.015_bb0210","first-page":"1","article-title":"A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management","author":"Walker","year":"2021","journal-title":"Disability and Rehabilitation"},{"issue":"1","key":"10.1016\/j.pedn.2025.02.015_bb0215","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1186\/s13023-024-03322-7","article-title":"Operational description of rare diseases: A reference to improve the recognition and visibility of rare diseases","volume":"19","author":"Wang","year":"2024","journal-title":"Orphanet Journal of Rare Diseases"},{"issue":"1","key":"10.1016\/j.pedn.2025.02.015_bb0220","doi-asserted-by":"crossref","first-page":"71","DOI":"10.1186\/s41687-021-00344-8","article-title":"A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy","volume":"5","author":"Williams","year":"2021","journal-title":"Journal of Patient-Reported Outcomes"},{"issue":"10","key":"10.1016\/j.pedn.2025.02.015_bb0225","doi-asserted-by":"crossref","first-page":"1294","DOI":"10.1038\/ejhg.2014.301","article-title":"A mixed methods study of age at diagnosis and diagnostic odyssey for Duchenne muscular dystrophy","volume":"23","author":"Wong","year":"2015","journal-title":"European Journal of Human Genetics"},{"issue":"7","key":"10.1016\/j.pedn.2025.02.015_bb0235","doi-asserted-by":"crossref","first-page":"746","DOI":"10.1080\/09638288.2017.1408148","article-title":"The experience of parents of adult sons with Duchenne muscular dystrophy regarding their prolonged roles as primary caregivers: A serial qualitative study","volume":"41","author":"Yamaguchi","year":"2019","journal-title":"Disability and Rehabilitation"},{"key":"10.1016\/j.pedn.2025.02.015_bb0240","series-title":"Husserl's phenomenology","author":"Zahavi","year":"2003"}],"container-title":["Journal of Pediatric Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0882596325000612?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0882596325000612?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,3,25]],"date-time":"2026-03-25T08:30:25Z","timestamp":1774427425000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0882596325000612"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5]]},"references-count":46,"alternative-id":["S0882596325000612"],"URL":"https:\/\/doi.org\/10.1016\/j.pedn.2025.02.015","relation":{},"ISSN":["0882-5963"],"issn-type":[{"value":"0882-5963","type":"print"}],"subject":[],"published":{"date-parts":[[2025,5]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Exploring the experiences of parents of children with Duchenne muscular dystrophy in Turkey: A descriptive phenomenological study","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric Nursing","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.pedn.2025.02.015","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2025 Elsevier Inc. All rights are reserved, including those for text and data mining, AI training, and similar technologies.","name":"copyright","label":"Copyright"}]}}