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. 2025 Jun 4;24(1):157.
doi: 10.1186/s12904-025-01796-1.

Parents' experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study

Laura Barrett  1 , George Peat  2 , Emma Victoria McLorie  3 , Helen Weatherly  4 , Sebastian Hinde  4 , Gabriella Lake Walker  5 , Jane Noyes  6 , Sam Oddie  7 , Chakrapani Vasudevan  7 , Richard G Feltbower  8   9 , Bob Phillips  10   11 , Catherine Hewitt  12 , Richard Hain  13 , Gayathri Subramanian  14 , Andrew Haynes  15 , Fliss E M Murtagh  16 , Julia Hackett  17 , Lorna Katharine Fraser  17
Affiliations

Parents' experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study

Laura Barrett et al. BMC Palliat Care. .

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Employment; Financial support; Guidelines; Paediatric care services; Paediatric end-of-life care; Palliative care; Qualitative research.

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Conflict of interest statement

Declarations. Ethics approval: This study had UK-wide approvals from the Health Research Authority and Health and Care Research Wales (20/01/2022, 300913) and West of Scotland Research Ethics Service (21/WS/0170). All methods were carried out in accordance with relevant guidelines and regulations including the ethical principles for medical research involving human subjects as outlined in the Declaration of Helsinki, World Medical Association. Consent to participate: All participants received a study information sheet and provided informed consent prior to participation. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

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