ArticlePalliative medicine2017
The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.
Article in Palliative medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 58 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
58 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Global Inequities in Unpaid Cancer Caregiving: A Systematic Review and Exploratory Meta-Analysis of Time and Cost Burden.Cancer medicine · 2026Pooled it
- The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review.Palliative medicine · 2024Pooled it
- Methodological challenges and potential solutions for economic evaluations of palliative and end-of-life care: A systematic review.Palliative medicine · 2024Pooled it
- Needs assessment instruments for family caregivers of cancer patients receiving palliative care: a systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Pooled it
- Experiences of Informal Caregivers Facing Cancer While Caring for Someone With Dementia: Qualitative Interview Study.JMIR cancer · 2026Article
- Considerations of equity in the development of tools that identify and respond to end-of-life carer support needs: a scoping review.BMJ open · 2026Article
- The Grieving Process of a Family Caregiver: Experience Before Influences What Happens Next-A Grounded Theory.Nursing reports (Pavia, Italy) · 2026Article
- Care-related burden and quality of life among informal caregivers for older adults: a cross-sectional study.BMC public health · 2026Article
- What can we learn from the accounts of lay carers administering end of life medications to a loved one at home? Exploring benefits, challenges and ways to empower patients and carers in the future.Palliative & supportive care · 2025Article
- Preparing for home death in rural areas - the experience of family caregivers providing palliative cancer care.International journal of circumpolar health · 2025Article
- Characteristics and population estimates of unpaid end of life carers: An observational study.Palliative medicine · 2025Observational
- A short form tool for clinical assessment of caregivers' reaction.BMC palliative care · 2025Article
- "You Want to Shield Your Kids": Patients' and Their Adult-Children's Serious Illness Conversations.Journal of pain and symptom management · 2025Article
- Development and psychometric evaluation of the needs assessment questionnaire for family caregivers of end-of-life older adults in home hospice care.Scientific reports · 2025Article
- Failed implementation of a nursing intervention to support family caregivers: An evaluation study using Normalization Process Theory.Journal of advanced nursing · 2025Article
- Article
- Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.Age and ageing · 2024Article
- The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.The oncologist · 2024Article
- Caregiver costs and financial burden in caregivers of African American cancer survivors.Journal of cancer survivorship : research and practice · 2024Article
- Systematic Review of the Cost-Effectiveness of Home-Based Palliative Care Interventions in Patients with Cancer: A Critical Analysis.Cancer management and research · 2024Review
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundFamily members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care.
aimThe aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care.
designA national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information.
resultsIn all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life.
conclusionCarers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions.
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