Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, Box 11189, 100 61 Stockholm, Sweden.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, Box 11189, 100 61 Stockholm, Sweden; The Department of Women's and Children's Health, Paediatric Oncology and Haematology, Karolinska Institutet, Karolinska University Hospital, Astrid Lindgren Children's Hospital, Childhood Cancer Research Unit, E-177 76 Stockholm, Sweden.
Eur J Paediatr Neurol. 2018 Jan;22(1):128-134. doi: 10.1016/j.ejpn.2017.10.008. Epub 2017 Nov 13.
To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).
This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.
More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.
Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.
探讨父母对治疗脊髓性肌萎缩症（SMA）患儿的医护人员的建议。
本研究源自瑞典全国性调查，采用内容分析法，对有关父母对治疗 SMA 患儿的医护人员建议的开放式问题的答案进行推断。在 2000 年至 2010 年间出生于瑞典、被诊断为 SMA 1 型或 2 型且在生命的第一年需要呼吸支持的合格患儿中，有 61 名患儿的父母参与了研究（应答率：87%）。其中，51 名父母回答了关于向治疗 SMA 患儿的医护人员提供建议的问题。
超过一半的父母建议与专业人员与家庭的关系有关。其次常见的建议涉及 SMA 知识的两个方面：希望医护人员具备知识，希望他们提供知识。父母还对日常生活中的支持提出了建议，包括对父母和患儿的支持。其他建议与护理的组织以及父母希望参与患儿护理有关。
父母建议医护人员增加对特定疾病的了解，将父母视为其孩子的专家，并尊重家庭，尤其是在利用患儿病情来提高医护人员能力的情况下。父母还建议医护人员在日常生活中提供更多实际支持，并配备一名病例协调员。
