Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Palliative Research Centre, Stockholm, Sweden.
The Department of Women's and Children's Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, 27106Karolinska Institute, Karolinska University Hospital, Stockholm, Sweden.
J Child Health Care. 2022 Sep;26(3):407-421. doi: 10.1177/13674935211015561. Epub 2021 May 17.
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. This study derives from two nationwide parental surveys in Sweden and Denmark, where content analysis was used to analyse one open-ended question about parents' advice to other parents. Ninety-five parents (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life) participated (response rate: 84%). Of these 95 parents, 81 gave written advice to other parents. Advice covered coping with everyday life with the ill child, existential issues of living with and losing a child with SMA and involvement in care of the child. Parents highlighted leading normal lives insofar as possible, for example, trying to see healthy aspects in their child, not only focusing on care and treatment. Shared advice can be related to resilience strategies to parents, which can help healthcare professionals and others to support parents in similar situations.
作为一名脊髓性肌萎缩症（SMA）患儿的家长，这种疾病会导致进行性肌肉无力，这涉及到一系列的挑战。本研究旨在探讨在缺乏有效治疗方法的情况下，患有严重 SMA 的儿童的家长希望向其他家长提供哪些建议。本研究源自瑞典和丹麦的两项全国性家长调查，采用内容分析法分析了一个关于家长向其他家长提供建议的开放式问题。95 名家长（其子女被诊断为 SMA 1 型或 2 型，在生命的第一年需要呼吸支持）参与了调查（应答率：84%）。在这 95 名家长中，有 81 人向其他家长提供了书面建议。建议内容涵盖了如何应对患病儿童的日常生活、与 SMA 患儿一起生活和失去患儿的存在问题以及如何参与照顾孩子。家长们强调尽可能地过正常生活，例如，尝试从孩子健康的方面看待问题，而不仅仅关注护理和治疗。这些共同的建议可以与父母的韧性策略相关联，这可以帮助医疗保健专业人员和其他人在类似情况下为父母提供支持。
