Barrett Laura, Peat George, McLorie Emma Victoria, Weatherly Helen, Hinde Sebastian, Walker Gabriella Lake, Noyes Jane, Oddie Sam, Vasudevan Chakrapani, Feltbower Richard G, Phillips Bob, Hewitt Catherine, Hain Richard, Subramanian Gayathri, Haynes Andrew, Murtagh Fliss E M, Hackett Julia, Fraser Lorna Katharine
The Paediatric Palliative Care Research Group, Department of Health Sciences, Faculty of Science, University of York, Rowntree Building Heslington, York, YO10 5DD, UK.
Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK.
BMC Palliat Care. 2025 Jun 4;24(1):157. doi: 10.1186/s12904-025-01796-1.
Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents' working lives and the financial strain of a child receiving end-of-life care. There has been very little recent research of parents' experiences of these impacts. Analysis of data from the second workstream of a national research programme on end-of-life care for infants, children and young people (ENHANCE) aimed to understand parents' experiences of the impact on their finances and working lives while their child received end-of-life care.
A multi-site qualitative study using in-depth interviews with bereaved parents, analysed using thematic analysis. Recruited through NHS sites, children's hospices and via the social media of third sector organisations.
Forty-two interviews with 55 parents were conducted (Fathers = 16, Mothers = 39), representing 44 children. Four themes were developed: (1) The added cost burden; (2) Pressures of juggling work; (3) Accessing support; and (4) Financial impacts continue after a child dies.
Financial hardship is a known consequence of having a child with a life-limiting condition, especially at the end of life, and adds considerable stress to an already painful situation, with the aftermaths continuing into bereavement. The impact is exacerbated by parents' need to reduce work so they can spend time caring for their dying child, leaving families in a financially and emotionally vulnerable position. There needs to be a consistent approach to immediate practical support from healthcare providers; a review of benefit system delays and the abrupt stopping of Disability Living Allowance; and the development of tailored employment support for parents to remain in or rejoin the workforce.
与在其他情况下失去亲人的人相比，失去孩子的父母出现身心健康不良后果的风险更高。父母工作生活持续受到的影响以及孩子临终护理带来的经济压力，使这些挑战更加严峻。近期很少有关于父母对这些影响的经历的研究。对一项关于婴儿、儿童和青少年临终护理的全国性研究计划（ENHANCE）第二个工作流的数据进行分析，旨在了解父母在孩子接受临终护理期间，其财务状况和工作生活受到影响的经历。
采用多地点定性研究，对失去孩子的父母进行深入访谈，并使用主题分析法进行分析。通过国民保健服务（NHS）机构、儿童临终关怀机构以及第三部门组织的社交媒体招募参与者。
对55位父母进行了42次访谈（父亲16位，母亲39位），涉及44名儿童。提炼出四个主题：（1）额外的成本负担；（2）兼顾工作的压力；（3）获得支持；（4）孩子去世后经济影响仍在持续。
孩子患有危及生命的疾病，尤其是在临终阶段，会导致经济困难，这在本已痛苦的情况下又增加了相当大的压力，且这种影响在丧亲之后仍会持续。父母需要减少工作以便有时间照顾临终的孩子，这加剧了这种影响，使家庭在经济和情感上处于脆弱境地。医疗服务提供者需要采取一致的方法提供即时的实际支持；审查福利系统的延误以及残疾生活津贴的突然停发；并为父母制定量身定制的就业支持措施，帮助他们留在或重新回到工作岗位。
