Evidence map›Paper›PMID 25706665›Full record

ArticleHealth & social care in the community2016

Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.

Sarah Knowles, Ryan Combs, Sue Kirk, May Griffiths, Neesha Patel, Caroline Sanders

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health & social care in the community, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
32citing papers in PubMed, 4 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

32 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Pooled it
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  4. Participatory research with carers: A systematic review and narrative synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024
    Pooled it
  5. Exploring the experiences and needs in everyday life of spouse carers of persons with dementia.International journal of qualitative studies on health and well-being · 2026
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  13. Factors associated with the identification and well-being of hidden and confirmed carers: a dyad analysis.The journals of gerontology. Series B, Psychological sciences and social sciences · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Sarah KnowlesCentre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
Ryan CombsCentre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
Sue KirkSchool of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
May GriffithsCentre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
Neesha PatelCentre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
Caroline SandersCentre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared-for person. The data were interpreted in terms of types of 'work' undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring 'work'. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self-management of LTCs in the community must be complemented by recognition of this group as potentially 'hidden carers', who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

Indexed as

Chronic DiseaseAdultCaregiversFemaleHumansInterviews as TopicLong-Term CareMaleMiddle AgedQualitative ResearchRetrospective StudiesSocial Supportcarerscarers’ serviceschronic illnesslong-term carepublic and patient involvementqualitative research

Identifiers

PMID25706665
PMCPMC4744729

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.