{"title":"\"它让我成为一个更好的人养育多名神经发育障碍儿童的独特经历","authors":"Sandy Thompson-Hodgetts , Marcela Barahona Ortega , Claire Anthony , Hayley McComish , Emily Sharp","doi":"10.1016/j.ridd.2024.104697","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><p>Much research has explored how raising a child with a neurodevelopmental disability influences parents’ well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers’ well-being and social participation.</p></div><div><h3>Methods</h3><p>Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.</p></div><div><h3>Results</h3><p>Three themes were identified: ‘<em>Knowledge is power</em>’ described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. ‘<em>Shifts in wellbeing’</em> acknowledged these mothers’ exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. ‘<em>(Dis)Connection and engagement with others’</em> reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers’ also experienced enhanced disability community and family connections, and a sense of meaning and purpose.</p></div><div><h3>Conclusions and Implications</h3><p>Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent’s challenges, but also celebrate and draw on families’ strengths and knowledge.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.9000,"publicationDate":"2024-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"“It makes me a better person”: The unique experiences of parenting multiple children who experience neurodevelopmental disability\",\"authors\":\"Sandy Thompson-Hodgetts , Marcela Barahona Ortega , Claire Anthony , Hayley McComish , Emily Sharp\",\"doi\":\"10.1016/j.ridd.2024.104697\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><p>Much research has explored how raising a child with a neurodevelopmental disability influences parents’ well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers’ well-being and social participation.</p></div><div><h3>Methods</h3><p>Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.</p></div><div><h3>Results</h3><p>Three themes were identified: ‘<em>Knowledge is power</em>’ described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. ‘<em>Shifts in wellbeing’</em> acknowledged these mothers’ exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. ‘<em>(Dis)Connection and engagement with others’</em> reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers’ also experienced enhanced disability community and family connections, and a sense of meaning and purpose.</p></div><div><h3>Conclusions and Implications</h3><p>Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent’s challenges, but also celebrate and draw on families’ strengths and knowledge.</p></div>\",\"PeriodicalId\":51351,\"journal\":{\"name\":\"Research in Developmental Disabilities\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.9000,\"publicationDate\":\"2024-02-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Research in Developmental Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0891422224000295\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Research in Developmental Disabilities","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0891422224000295","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
“It makes me a better person”: The unique experiences of parenting multiple children who experience neurodevelopmental disability
Background
Much research has explored how raising a child with a neurodevelopmental disability influences parents’ well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers’ well-being and social participation.
Methods
Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.
Results
Three themes were identified: ‘Knowledge is power’ described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. ‘Shifts in wellbeing’ acknowledged these mothers’ exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. ‘(Dis)Connection and engagement with others’ reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers’ also experienced enhanced disability community and family connections, and a sense of meaning and purpose.
Conclusions and Implications
Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent’s challenges, but also celebrate and draw on families’ strengths and knowledge.
期刊介绍:
Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.