Enhancing primary care support for informal carers: A scoping study with professional stakeholders
Open accessAbstract
Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long-term conditions. Caring negatively impacts on carers' health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty-four semi-structured interviews, with 25 participants were conducted, audio-recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self-identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers' needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.
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In contrast, Western families may utilize respite care or other primary care support, which helps distribute the caregiving burden and alleviate stress.
“In contrast, Western families may utilize respite care or other primary care support, which helps distribute the caregiving burden and alleviate stress.”
From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [64]
The Findings (‘Assessing and addressing carers needs’; page unavailable) identify respite services as a potential benefit of assessing carers’ needs, and the Introduction says policies giving carers free time and emotional support are associated with better outcomes. The paper does not establish that Western families use these services or that they distribute caregiving duties and alleviate stress; its Discussion says effective primary-care support for carers is not yet well established. (LLM, conf=0.84)
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Cited by
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Lin, X., Liu, J., Chen, J., Tang, J., Huang, Z., Wang, Y., & Shi, S. (2026) · Asia-Pacific Journal of Oncology Nursing · doi:10.1016/j.apjon.2025.100850 · Cited by 1 · see citing works
“64,65 Although these coping strategies demonstrated family caregivers' resilience and strong familial commitment, they often come at substantial personal costs that may erode family caregivers' health, autonomy, and long-term caregiving capacity.”
- Authors
- Peters, M., Rand, S., & Fitzpatrick, R.
- Affiliations
- University of Oxford (GB)
- University of Kent (GB)
- Corresponding author
- Peters, Michele
- Venue
- Health & Social Care in the Community
- Publisher
- Wiley
- Published
- 2019-11-26
- Volume
- 28
- Issue
- 2
- Pages
- 642-650
- ISSN
- 0966-0410 (ISSN-L)
- 1365-2524
- PMC
- PMC7027470
- OpenAlex
- W2990733937
- Cited by
- 41
- References
- 0
- Citations by year
- 2026: 3 · 2025: 12 · 2024: 10 · 2023: 6 · 2022: 4 · 2021: 3 · 2020: 3
- FWCI
- 4.64
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Health & Social Care in the Community (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Kent Academic Repository (University of Kent) (acceptedVersion)
- Funders
- National Institute for Health Research (PR‐UN‐0409‐10108)
- Department of Health, Australian Government
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Keywords
- informal caregivers, primary care, caregiver support, chronic disease, carer needs assessment, inter-agency cooperation, health and social care, carer recognition, health service commissioning
- MeSH terms
- Stakeholder Participation, Aged, Delivery of Health Care, Female, Patient Care, Humans, Interviews as Topic, Male, Middle Aged, Primary Health Care, Social Support, Caregivers, Qualitative Research
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