Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey

Aim To explore experiences of peer support among parents of children with congenital heart defects. Design A study analysing written responses to open‐ended questions about peer support, collected via an online survey distributed in Sweden. Methods Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open‐ended questions was distributed and responses were analysed with systematic text condensation. Results Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. Conclusion Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. Impact This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families. 摘要 目的 探讨先天性心脏病患儿家长同侪支持的经历。 设计 开展研究,对通过瑞典在线调查获得的同侪支持等开放式问题的书面答复进行分析。 方法 2018年,通过便利抽样、瑞典心脏缺陷儿童家庭基金会的广告以及两个封闭的脸书软件小组,在3个月内招募受访者。分发一份包含开放式问题的在线调查问卷,汇编系统文本,对相关答复进行分析。 结果 同侪支持应以家长的相互理解和情感支持为基础。聆听同辈的故事,可获得有益的见解,从而了解心脏缺陷儿童家长的生活。个人层面的奖励包括接受和提供同侪支持。同侪支持同样会带来不利影响,有时会造成家长心理困扰和退出同侪支持活动。 结论 对于先天性心脏病患儿的家长而言,同侪支持可帮助其释放情感,因此,他们感恩这种支持,认为这种支持的提供可以带来积极影响。尽管同侪支持活动会对个人带来较大益处,其同样可能导致部分人出现心理困扰。 影响 本研究旨在探讨先天性心脏病患儿家长间的同侪支持。主要调查结果说明了同侪支持对个体的潜在影响,呼吁人们注意与同侪支持活动相关的经验益处,此外,提供了部分有关潜在负面影响的见解。调查结果与护士、助产士和其他为这些家庭提供护理的专业卫生人员相关。