Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton T6G 2G4, Canada.
Department of Pediatrics, University of Alberta, 11405 87 Ave, Edmonton T6G 1C9, Canada.
Res Dev Disabil. 2024 Apr;147:104697. doi: 10.1016/j.ridd.2024.104697. Epub 2024 Feb 19.
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.
Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.
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.
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.
大量研究探讨了养育有神经发育障碍的孩子如何影响父母的幸福感。然而,很少有研究关注养育多个有神经发育障碍的孩子的独特经历。我们探讨了养育多个有神经发育障碍的孩子的独特经历,重点是母亲的幸福感和社会参与度。
10 位养育多个有神经发育障碍的孩子的母亲参与了半结构化访谈。使用反思性主题分析方法对访谈进行了分析。
确定了三个主题:“知识就是力量”描述了每个经历残疾的孩子增强残疾知识和倡导的积极影响。“幸福感的转变”承认这些母亲的疲惫、自我保健时间减少和无形的工作,但也增强了对他人的赋权、目标感和同理心。“(失)与他人的联系和参与”反映了平衡责任、社会和社区参与以及孤立体验的困难。然而,母亲们也经历了增强的残疾社区和家庭联系,以及意义和目的感。
研究结果强调了养育多个有神经发育障碍的孩子的挑战和许多有益和独特的经历。鼓励卫生、教育和社会服务从业者承认父母的挑战,但也要庆祝并借鉴家庭的优势和知识。