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

Health and Social Care in the Community

Volumn 24, Issue 2, 2016, Pages 203-213

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

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

Carers; Carers' services; Chronic illness; Long term care; Public and patient involvement; Qualitative research

Indexed keywords

ADULT; CAREGIVER; CHRONIC DISEASE; FEMALE; HUMAN; INTERVIEW; LONG TERM CARE; MALE; MIDDLE AGED; PSYCHOLOGY; QUALITATIVE RESEARCH; RETROSPECTIVE STUDY; SOCIAL SUPPORT;

ADULT; CAREGIVERS; CHRONIC DISEASE; FEMALE; HUMANS; INTERVIEWS AS TOPIC; LONG-TERM CARE; MALE; MIDDLE AGED; QUALITATIVE RESEARCH; RETROSPECTIVE STUDIES; SOCIAL SUPPORT;

EID: 84956788891     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/hsc.12207     Document Type: Article

References (42)

1. Arksey H. (2002) Rationed care: assessing the support needs of informal carers in English social services authorities. Journal of Social Policy 31 (1), 81-101.
2. Arksey H. & Hirst M. (2005) Unpaid carers' access to and use of primary care services. Primary Health Care Research and Development 6 (2), 101-116.
3. Arksey H., Jackson K., Wallace A. et al. (2003) Access to Health Care for Carers: Barriers and Interventions. London School of Hygiene and Tropical Medicine, National Co-ordinating Centre for NHS Service Delivery and Organisation R and D (NCCSDO), London, UK. Available at http://www.york.ac.uk/inst/spru/pubs/pdf/access.pdf (accessed on 9/3/2011).
4. Arno P.S., Levine C. & Memmott M.M. (1999) The economic value of informal caregiving. Health Affairs 18 (2), 182-188.
5. Barlow J., Wright C., Sheasby J., Turner A. & Hainsworth J. (2002) Self-management approaches for people with chronic conditions: a review. Patient Education and Counseling 48 (2), 177-187.
6. Buckner L. & Yeandle S. (2011) Valuing Carers 2011: Calculating the Value of Carers' Support. Carers UK, The Centre for International Research on Care, Labour and Equalities and the University of Leeds, London, UK. Available at: http://www.carersuk.org/professionals/resources/research-library/item/2123-valuing-carers-2011 (accessed on 15/6/2011).
7. Butterworth P., Pymont C., Rodgers B., Windsor T.D. & Anstey K.J. (2010) Factors that explain the poorer mental health of caregivers: results from a community survey of older Australians. Australian and New Zealand Journal of Psychiatry 44 (7), 616-624.
8. Caress A.-L., Luker K.A., Chalmers K.I. & Salmon M.P. (2009) A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease. Journal of Clinical Nursing 18 (4), 479-491.
9. Caress A.L., Ford A., Roberts L., Turner K., Ward D. & Williamson T. (2012) Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research. INVOLVE, Eastleigh, UK. Available at: http://www.rdslondon.co.uk/RDSLondon/media/RDSContent/files/PDFs/INVOLVEBriefingNotesFeb2012.pdf (accessed on 5/11/2013).
10. Corbin J. & Strauss A. (1985) Managing chronic illness at home: three lines of work. Qualitative Sociology 8 (3), 224-247.
11. Elderton S. (2013) Carers Australia submission to the Commission of Audit - December 2013.pdf. Available at: http://www.carersaustralia.com.au/storage/Carers%20Australia%20submission%20to%20the%20%20Commission%20of%20Audit%20-%20December%202013.pdf (accessed on 11/12/2014).
12. Glaser B.G. (1965) The constant comparative method of qualitative analysis. Social Problems 12 (4), 436-445.
13. Hallberg L.R.-M. (2006) The "core category" of grounded theory: making constant comparisons. International Journal of Qualitative Studies on Health and Well-being 1 (3), 141-148.
14. Henderson J. (2001) 'He's not my carer - he's my husband': personal and policy constructions of care in mental health. Journal of Social Work Practice 15 (2), 149-159.
15. Hinder S. & Greenhalgh T. (2012) "This does my head in". Ethnographic study of self-management by people with diabetes. BMC Health Services Research 12 (1), 83.
16. Hirst M. (2004) Hearts and Minds: The Health Effects of Caring. University of York Social Policy Research Unit, York, UK. Available at: http://www.york.ac.uk/inst/spru/pubs/pdf/Hearts&Minds.pdf (accessed on 16/6/2011).
17. Holzhausen E. & Clark D. (2001) You Can Take Him Home Now: Carers' Experiences of Hospital Discharge. Carers National Association, London, UK. Available at: http://www.carersuk.org/professionals/resources/research-library/item/517-you-can-take-him-home-now-carers-experiences-of-hospital-discharge (accessed on 16/6/2011).
18. Hughes N., Locock L. & Ziebland S. (2013) Personal identity and the role of "carer" among relatives and friends of people with multiple sclerosis. Social Science and Medicine 96, 78-85.
19. Jones R., Mackenzie A., Greenwood N., Atkins C. & Habibi R. (2012) General practitioners, primary care and support for carers in England: can training make a difference? Health and Social Care in the Community 20 (2), 128-136.
20. Katbamna S., Bhakta P., Ahmad W., Baker R. & Parker G. (2002) Supporting South Asian carers and those they care for: the role of the primary health care team. The British Journal of General Practice 52 (477), 300-305.
21. Keeley B. & Clarke M. (2003) Primary Carers - Identifying and Providing Support to Carers in Primary Care. The Princess Royal Trust for Carers, London, UK. Available at: http://www.carers.org/about-the-trust/publications.asp (accessed on 16/6/2011).
22. Kennedy A., Bower P., Reeves D. et al. (2013) Implementation of self management support for long term conditions in routine primary care settings: cluster randomised controlled trial. BMJ 346, f2882.
23. May J., Ellis-Hill C. & Payne S. (2001) Gatekeeping and legitimization: how informal carers' relationship with health care workers is revealed in their everyday interactions. Journal of Advanced Nursing 36 (3), 364-375.
24. McGarry J. & Arthur A. (2001) Informal caring in late life: a qualitative study of the experiences of older carers. Journal of Advanced Nursing 33 (2), 182-189.
25. Milne A. & Chryssanthopoulou C. (2005) Dementia care-giving in black and Asian populations: reviewing and refining the research agenda. Journal of Community and Applied Social Psychology 15 (5), 319-337.
26. Molyneaux V., Butchard S., Simpson J. & Murray C. (2011) Reconsidering the term "carer": a critique of the universal adoption of the term "carer". Ageing and Society 31 (03), 422-437.
27. Navaie-Waliser M., Feldman P.H., Gould D.A., Levine C., Kuerbis A.N. & Donelan K. (2001) The experiences and challenges of informal caregivers: common themes and differences among whites, blacks, and hispanics. The Gerontologist 41 (6), 733-741.
28. O'Connor D.L. (2007) Self-identifying as a caregiver: exploring the positioning process. Journal of Aging Studies 21 (2), 165-174.
29. Parker G., Arksey H. & Harden M. (2010) Meta-review of International Evidence on Interventions to Support Carers. Social Policy Research Unit, University of York, York. Available at: http://www.york.ac.uk/inst/spru/research/pdf/CarersLit.pdf (accessed on 24/2/2014).
30. Phillipson L., Jones S.C. & Magee C. (2014) A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. Health and Social Care in the Community 22 (1), 1-12.
31. Rand S. & Malley J. (2013) Carers' quality of life and experiences of adult social care support in England. Health and Social Care in the Community 22 (4), 375-385.
32. Rogers A., Gately C., Kennedy A. & Sanders C. (2009) Are some more equal than others? Social comparison in self-management skills training for long-term conditions. Chronic Illness 5 (4), 305-317.
33. Staniszewska S. (2009) Patient and public involvement in health services and health research: a brief overview of evidence, policy and activity. Journal of Research in Nursing 14 (4), 295-298.
34. Staniszewska S., Brett J., Mockford C. & Barber R. (2011) The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care 27 (04), 391-399.
35. Stevenson F. (2008) Community care and informal caring. In: G. Scrambler (Ed.) Sociology as Applied to Medicine. Saunders Elsevier, London. Available at: http://www.elsevier-etextbooks.com/pdfreader/sociology-as-applied-to-medicine (accessed on 7/11/2013).
36. Stoltz P., Udén G. & Willman A. (2004) Support for family carers who care for an elderly person at home - a systematic literature review. Scandinavian Journal of Caring Sciences 18 (2), 111-119.
37. The Princess Royal Trust (2003) Focus on Carers and the NHS - Identifying and Supporting Hidden Carers. The Princess Royal Trust, Glasgow, UK. Available at: http://static.carers.org/files/carersnhs-11.pdf (accessed on 7/11/2013).
38. Thomas C., Morris S.M. & Harman J.C. (2002) Companions through cancer: the care given by informal carers in cancer contexts. Social Science and Medicine 54 (4), 529-544.
39. Vassilev I., Rogers A., Sanders C. et al. (2011) Social networks, social capital and chronic illness self-management: a realist review. Chronic Illness 7 (1), 60-86.
40. Vassilev I., Rogers A., Blickem C. et al. (2013) Social networks, the "work" and work force of chronic illness self-management: a survey analysis of personal communities. PLoS ONE 8 (4), e59723.
41. Wilson C., Alam R., Latif S., Knighting K., Williamson S. & Beaver K. (2012) Patient access to healthcare services and optimisation of self-management for ethnic minority populations living with diabetes: a systematic review. Health and Social Care in the Community 20 (1), 1-19.
42. Yaffe M.J. & Jacobs B.J. (2008) Education about family caregiving. Canadian Family Physician 54 (10), 1359-1360.