ArticleBMC palliative care2020
Equity and the financial costs of informal caregiving in palliative care: a critical debate.
Article in BMC palliative care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers, 4 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
43 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- The Burden of Informal Caregiving for Adults with Musculoskeletal Conditions: A Systematic Review.PharmacoEconomics · 2025Pooled it
- First generation migrants' experiences of terminal illness: a systematic review of diasporic dying.BMC palliative care · 2025Pooled it
- Exploring concepts and trends in informal caregiver burden: systematic review using citation network and content analysis.Aging clinical and experimental research · 2023Pooled it
- A Systematic Review of the Experiences and Support Needs of Informal Caregivers for People Who Have Attempted Suicide or Experienced Suicidal Ideation.International journal of environmental research and public health · 2022Pooled it
- Cost-Utility of the eHealth Application 'Oncokompas', Supporting Incurably Ill Cancer Patients to Self-Manage Their Cancer-Related Symptoms: Results of a Randomized Controlled Trial.Current oncology (Toronto, Ont.) · 2022Trial
- The Influence of Resource Constraints on Risk-Related Conversations With Specialists Among a Community-Based Sample of Women at High Risk for Breast Cancer.Cancer medicine · 2026Article
- Gender-sensitive and diversity-sensitive end-of-life care in Switzerland (GiveCare): a mixed-methods study protocol.BMJ open · 2026Article
- Uncertainty and unmet needs in older high-risk blunt trauma survivors and their caregivers: a multi-centre mixed methods study.Scientific reports · 2026Article
- What is the quality of care at the end of life? Qualitative findings from a nationally-representative post-bereavement survey across England and Wales.Journal of health services research & policy · 2026Article
- A Research Agenda to Mitigate Racial and Ethnic Disparities in U.S. Critical Care Medicine: An Official American Thoracic Society Research Statement.American journal of respiratory and critical care medicine · 2025Article
- Unpaid care, time taken off work and healthcare costs before and after partner bereavement among same-gender and different-gender partners: A national population-based study.Palliative medicine · 2025Article
- Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.Journal of child health care : for professionals working with children in the hospital and community · 2025Article
- Exploring financial difficulty and help-seeking behaviour among medics in the United Kingdom: a cross-sectional survey.Human resources for health · 2025Article
- Lived experiences of caregivers with a family member living with a severe mental health condition in South Africa.BMC psychiatry · 2025Article
- 'People ring because they're frightened': findings from a realist evaluation on the impact of timely responsive care at home at the end of life.BMC palliative care · 2025Article
- Assessment of Caregiver Burden and Burnout in Pediatric Palliative Care: A Path Toward Improving Children's Well-Being.Healthcare (Basel, Switzerland) · 2025Article
- Social contextual factors, social support and accessibility of social services in the health and life satisfaction of family caregivers in Hong Kong.BMC public health · 2025Article
- Caregiver accompaniment and non-abandonment in voluntary assisted dying: Phenomenological analysis.Palliative & supportive care · 2025Article
- Financial health and well-being of rural female caregivers of older adults with chronic illnesses.BMC geriatrics · 2025Article
- Analyzing the use of specialized palliative care in intensive care unit patients in Germany: a cross-sectional study.BMC palliative care · 2025Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundInformal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial.
methodsThe aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care.
resultsThe financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration.
conclusionsVarious groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.