ArticlePalliative care and social practice2024
Voices of unpaid carers: problems and prospects in accessing palliative care and self-care information, resources and services.
Article in Palliative care and social practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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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.
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Who cites it
2 citing papers in PubMed.
- The Family Caregiver Role From the Perspective of Older Women Experiencing Poverty in a High-Income Country: A Qualitative Study.Journal of advanced nursing · 2026Article
- Research priority setting for unpaid carers of older adults, patients with palliative care needs and at the end of life in Australia.Palliative care and social practice · 2026Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Unpaid carers make a substantial contribution to the health economy and carers of palliative patients are particularly vulnerable due to special patient needs and excessive carer burden. The Australian Government recently implemented the Integrated Carer Support Service Model to provide a range of free services to carers in the community. However, it is unclear whether such initiatives are effective and, more importantly, how carers of palliative patients gain access to information, support and services for the patient and themselves. Objectives: We sought to investigate unpaid carers' experiences in accessing information and resources for support with patient care with a specific focus on palliative care resources and to determine carers' access to information and support for self-care. We also aimed to identify what opportunities and challenges remain for these particular carers according to their experiences. Methods: We conducted 18 semi-structured interviews and 3 focus groups with unpaid family or friend carers of palliative patients in South Australia from metropolitan, regional and rural communities. Grounded in a descriptive phenomenological paradigm, we conducted a hybrid approach to thematic analysis combining deductive and inductive coding following Fereday and Muir-Cochrane's method. Results: The government's web-based initiative provided little impact in supporting carers from our cohort. There remains a substantial gap between the formal recognition of the importance of carers and their lived reality. This recognition by health professionals is vital, as carer self-identification is not common and affects help-seeking behaviour. Carers seek and respond to more grassroots, personalized forms of support and sharing of information. Conclusion: The lack of self-identification affects carers' help-seeking behaviours. Carer identification and recognition need to be initiated by health professionals in a proactive manner to ensure carers are prepared for their role and are emotionally supported to sustain it. Carers seek face-to-face guidance and sources of information.
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Registered trials
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.