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These challenges are exacerbated by the continued effects on parents\u2019 working lives and the financial strain of a child receiving end-of-life care. There has been very little recent research of parents\u2019 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\u2019 experiences of the impact on their finances and working lives while their child received end-of-life care.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>A multi-site qualitative study using in-depth interviews with bereaved parents, analysed using thematic analysis. Recruited through NHS sites, children\u2019s hospices and via the social media of third sector organisations.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>Forty-two interviews with 55 parents were conducted (Fathers\u2009=\u200916, Mothers\u2009=\u200939), 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.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p>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\u2019 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.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1186\/s12904-025-01796-1","type":"journal-article","created":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T12:59:41Z","timestamp":1749041981000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Parents\u2019 experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study"],"prefix":"10.1186","volume":"24","author":[{"given":"Laura","family":"Barrett","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"George","family":"Peat","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma Victoria","family":"McLorie","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Weatherly","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sebastian","family":"Hinde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabriella Lake","family":"Walker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Noyes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sam","family":"Oddie","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chakrapani","family":"Vasudevan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard G.","family":"Feltbower","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bob","family":"Phillips","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Hewitt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"Hain","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayathri","family":"Subramanian","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Haynes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fliss E. 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BMJ Supportive & Palliative Care. 2023;13:15. https:\/\/spcare.bmj.com\/content\/13\/1\/15.abstract.","DOI":"10.1136\/bmjspcare-2021-003019"}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-025-01796-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-025-01796-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-025-01796-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T12:59:49Z","timestamp":1749041989000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpalliatcare.biomedcentral.com\/articles\/10.1186\/s12904-025-01796-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,4]]},"references-count":56,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,12]]}},"alternative-id":["1796"],"URL":"https:\/\/doi.org\/10.1186\/s12904-025-01796-1","relation":{},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,4]]},"assertion":[{"value":"31 March 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 May 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 June 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"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.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"All participants received a study information sheet and provided informed consent prior to participation.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"157"}}