Castor Charlotte, Landgren Kajsa, Hansson Helena, Kristensson Hallström Inger
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
Paediatrics and Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.
Health Soc Care Community. 2018 Mar;26(2):224-231. doi: 10.1111/hsc.12512. Epub 2017 Nov 2.
Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes: "Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.
家庭通常更倾向于居家护理而非住院护理，并且在全球范围内，针对患病儿童的居家护理服务正在增加，但对于家庭在治疗性和姑息性居家护理期间的需求了解有限。本研究的目的是阐明当患病儿童接受来自县级初级医疗服务机构的居家护理时，家庭成员的生活经历。本研究采用了描述性定性设计，于2015年12月至2017年1月期间，对瑞典南部的12个家庭进行了访谈，这些家庭包括接受居家护理的患病儿童及其母亲、父亲和兄弟姐妹。采用诠释现象学方法对转录后的访谈内容进行分析。家庭成员的生活经历被描述为三个基本主题：“加强家庭生活”涉及居家护理如何在生活紧张时期带来自由和便利，并支持家庭的日常生活。由于接受居家护理节省了时间和精力，日常社交活动和关系得以维持。“促进健康”涉及随着孩子病情迹象的缓解，家庭成员的疾病负担如何减轻，以及当孩子在家中接受护理时，整个家庭的幸福感如何增强。这为家庭成员的心理社会恢复提供了一个宁静的喘息机会。第三个主题“建立联盟”涉及建立信任联盟对于沟通护理参与的重要性。如果没有建立信任联盟，父母会感到责任重大，家庭成员也会变得焦虑。研究结果表明，家庭中的护理是住院护理的有益补充。居家护理应密切关注家庭成员的需求和状况，因为当期望和可能性未能成功共享时，居家护理的积极效果可能会受到损害。
