The Juliane Marie Centre for Women, Children and Reproduction, Copenhagen University Hospital, Blegdamsvej 9, Copenhagen, Denmark.
Eur J Cancer Care (Engl). 2012 Jan;21(1):59-66. doi: 10.1111/j.1365-2354.2011.01280.x. Epub 2011 Aug 18.
The study aims to describe the experiences of a hospital-based home care programme in the families of children with cancer. Fourteen parents, representing 10 families, were interviewed about their experiences of a hospital-based home care programme during a 4-month period in 2009 at a university hospital in Denmark. Five children participated in all or part of the interview. The interviews were transcribed verbatim and analysed using qualitative content analysis. The findings indicate that hospital-based home care enabled the families to remain intact throughout the course of treatment, as it decreased the strain on the family and the ill child, maintained normality and an ordinary everyday life and fulfilled the need for safety and security. According to family members of children with cancer, hospital-based home care support enhanced their quality of life during the child's cancer trajectory. Our study highlights the importance of providing hospital-based home care with consideration for the family members' need for the sense of security achieved by home care by experienced paediatric oncology nurses and regular contact with the doctor. In future studies, interviews with children and siblings could be an important source of information for planning and delivering care suited to the families' perceived needs.
本研究旨在描述一家儿童医院的家庭为基础的居家护理计划在癌症儿童家庭中的体验。2009 年，在丹麦一所大学医院，14 名家长（代表 10 个家庭）接受了关于其在 4 个月期间参与医院为基础的居家护理计划的体验的访谈。5 名儿童全程或部分参与了访谈。访谈内容逐字转录并进行了定性内容分析。研究结果表明，医院为基础的居家护理使家庭在整个治疗过程中保持完整，因为它减轻了家庭和患病儿童的压力，维持了常态和日常生活的正常，满足了对安全的需求。癌症儿童的家庭成员认为，医院为基础的居家护理支持提高了他们在儿童癌症轨迹期间的生活质量。我们的研究强调了为家庭提供医院为基础的居家护理的重要性，同时要考虑到经验丰富的儿科肿瘤护士提供的居家护理所带来的安全感以及与医生的定期联系，以满足家庭成员的需求。在未来的研究中，对儿童和兄弟姐妹的访谈可以成为规划和提供适合家庭感知需求的护理的重要信息来源。
