{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T02:51:37Z","timestamp":1789613497377,"version":"build-2803163510"},"reference-count":42,"publisher":"SAGE Publications","issue":"6","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JND"],"published-print":{"date-parts":[[2021,11,2]]},"abstract":"<jats:p>Background: The impacts of genetic muscle disorders on quality of life in affected children are well-documented. However, few studies have investigated children\u2019s coping strategies and relationships between coping and quality of life. Objectives: To determine coping strategy use, efficacy, and associations with quality of life in children with a genetic muscle disorder. Methods: Forty-eight children (6\u201315 years, 58% male) with a genetic muscle disorder were identified as part of a national prevalence study. Children completed the Kidcope in response to a specific stressor (doctors visits) and the Pediatric Quality of Life Inventory Neuromuscular Module. Results: \u2018Wishful thinking\u2019 (75%, 36\/48) and \u2018cognitive restructuring\u2019 (71%, 34\/48) were the most frequently used coping strategies. \u2018Self-criticism\u2019 (12%, 6\/48), and \u2018blaming others\u2019 and \u2018resignation\u2019 (both 19%, 9\/48) were the least used strategies. Coping strategy use did not differ across age and sex groups (p\u2019s from 0.08 to 1.00). Positive coping strategies tended to be more effective (medians ranged from 2.00 to 2.75) than negative strategies (medians ranged from 1.38 to 2.50). Using a greater number of different types of positive (F(4, 46)\u200a=\u200a5.79, p\u200a=\u200a0.001) and\/or negative (F(4, 44)\u200a=\u200a5.64, p\u200a0.001) coping strategies was linked to poorer health-related quality of life. Conclusion: We conclude that children with genetic muscle disorders use a wide range of positive and\/or negative coping strategies in response to stressors associated with a doctor visit and may benefit from greater support to improve health-related quality of life. Findings support the value of routine screening of children\u2019s coping to identify those who would benefit from support.<\/jats:p>","DOI":"10.3233\/jnd-200564","type":"journal-article","created":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T10:43:36Z","timestamp":1623408216000},"page":"1069-1078","source":"Crossref","is-referenced-by-count":3,"title":["Coping in Children and Adolescents with a Genetic Muscle Disorder \u2013Findings from a Population-Based Study"],"prefix":"10.1177","volume":"8","author":[{"given":"Kelly M.","family":"Jones","sequence":"first","affiliation":[{"name":"National Institute for Stroke and Applied Neurosciences, School of Clinical Sciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"on behalf of the MD-PREV study group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aaron","family":"Anand","sequence":"additional","affiliation":[{"name":"National Institute for Stroke and Applied Neurosciences, School of Clinical Sciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charmaine","family":"Bright","sequence":"additional","affiliation":[{"name":"School of Clinical Sciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gina","family":"O\u2019Grady","sequence":"additional","affiliation":[{"name":"Paediatric Neurology, Starship Children\u2019s Health, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miriam J.","family":"Rodrigues","sequence":"additional","affiliation":[{"name":"Neurology Department, Auckland City Hospital, Auckland, New Zealand"},{"name":"Muscular Dystrophy Association of New Zealand, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemare","family":"Ranta","sequence":"additional","affiliation":[{"name":"Department of Neurology, Wellington Regional Hospital, University of Otago, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard H.","family":"Roxburgh","sequence":"additional","affiliation":[{"name":"Neurology Department, Auckland City Hospital, Auckland, New Zealand"},{"name":"Centre for Brain Research, University of Auckland, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice","family":"Theadom","sequence":"additional","affiliation":[{"name":"National Institute for Stroke and Applied Neurosciences, School of Clinical Sciences, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"key":"10.3233\/JND-200564_ref1","doi-asserted-by":"crossref","first-page":"341","DOI":"10.3233\/JND-170287","article-title":"Impacts for children living with genetic muscle disorders and their parents - 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