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Caring for a person in advanced illness and suffering from breathlessness at home: Threats and resources

Published online by Cambridge University Press:  18 June 2009

Marjolein H. Gysels  and
Irene J. Higginson
Marjolein H. Gysels*
Affiliation:
King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, London, United Kingdom Barcelona Centre for International Health Research (CRESIB), Barcelona, Spain
Irene J. Higginson
Affiliation:
King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, London, United Kingdom
*
Address correspondence and reprint requests to: Marjolein Gysels, Palliative Care, Policy and Rehabilitation, King's College London, Weston Education Centre, Cutcombe Road, London SE5 9RJ, United Kingdom. E-mail: [email protected]
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Abstract

Objective:

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

Methods:

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Results:

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Significance of results:

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

Keywords

Informal careCarersAdvanced illnessBreathlessnessPositive factors
Type
Original Articles
Information
Palliative & Supportive Care , Volume 7 , Issue 2 , June 2009 , pp. 153 - 162
Copyright
Copyright © Cambridge University Press 2009

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References

REFERENCES

Anderson, C., Linto, J., & Stewartwinne, E. (1995). A population based assessment of the impact and burden of caregiving for long term stroke survivors. Stroke, 26, 849.CrossRefGoogle ScholarPubMed
Arksey, H. & Glendinning, C. (2007). Choice in the context of informal care-giving. Health and Social Care in the Community, 15, 165–175.Google ScholarPubMed
Bergs, D. (2002). “The hidden client”—Women caring for husbands with COPD: Their experience of quality of life. Journal of Clinical Nursing, 11, 613–621.CrossRefGoogle ScholarPubMed
Booth, S., Silvester, S., & Todd, C. (2003). Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers. Palliative & Supportive Care, 1, 337–344.CrossRefGoogle ScholarPubMed
Clark, D. & Seymour, J. (1999). Reflections on Palliative Care. Buckingham, UK: Open University Press.Google Scholar
Department for Work and Pensions. (2005). Opportunity Age: Meeting the Challenges of Ageing in the 21st Century. London: Department for Work and Pensions.Google Scholar
Department of Health. (1990). Community Care in the Next Decade and Beyond: Policy and Guidance. London: HMSO.Google Scholar
Department of Health. (1999). Caring about carers: A National Strategy for Carers. London: Department of Health.Google Scholar
Department of Health. (2005). Independence, Well-being and Choice: Our Vision for the Future of Social Care for Adults in England. London: Department of Health.Google Scholar
Elkington, H., White, P., Addington-Hall, J., et al. (2004). The last year of life of COPD: A qualitative study of symptoms and services. Respiratory Medicine, 98, 439–445.CrossRefGoogle ScholarPubMed
Goldstein, N.E., Concato, J., Fried, T.R., et al. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20, 138–144.CrossRefGoogle ScholarPubMed
Harding, R., Higginson, I.J., & Donaldson, N. (2003). The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supportive Care in Cancer, 11, 638–643.CrossRefGoogle ScholarPubMed
Hudson, P. (2004). Positive aspects and challenges associated with caring for a dying relative at home: Implications for practice and research. International Journal of Palliative Nursing, 10, 58–65.CrossRefGoogle Scholar
Jones, R.V., Hansford, J., & Fiske, J. (1993). Death from cancer at home: The carers' perspective. General Practice, 306, 249–251.Google ScholarPubMed
Liston, R., Mann, L., & Banerjee, A. (1995). Stress in informal carers of hospitalised elderly patients. Journal of the Royal College of Physicians of London, 29, 388–391.Google ScholarPubMed
McCorkle, R., Yost, L.S., Jepson, C., et al. (1993). A cancer experience: Relationship of patient psychosocial responses to caregiver burden over time. Psycho-Oncology, 2, 21–32.CrossRefGoogle Scholar
Nolan, M., Grant, G., & Keady, G. (1996). Understanding Family Care: A Multidimensional Model of Caring and Coping. Buckingham, UK: Open University Press.Google Scholar
Rhodes, P. & Shaw, S. (1999). Informal care and terminal illness. Health and Social Care in the Community, 7, 39–50.CrossRefGoogle ScholarPubMed
Salmon, J.R., Kwak, J., Acquaviva, K.D., et al. (2005). Transformative aspects of caregiving at life's end. Journal of Pain and Symptom Management, 29, 121–129.CrossRefGoogle ScholarPubMed
Schneider, J., Murray, J., Banerjee, S., et al. (1999). EUROCARE: A cross-national study of co-resident spouse carers for people with Alzheimer's disease: I—Factors associated with carer burden. International Journal of Geriatric Psychiatry, 14, 651–661.3.0.CO;2-B>CrossRefGoogle ScholarPubMed
Smith, P. (2001). Who is a carer? Experiences of family caregivers in palliative care. In Chronic and Terminal Illness, Payne, S. & Ellis-Hill, C. (eds.). Oxford: Oxford University Press.Google Scholar
Solano, J.P., Gomes, B., & Higginson, I.J. (2006). A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain and Symptom Management, 31, 58–69.CrossRefGoogle ScholarPubMed
Strauss, A.L. & Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage.Google Scholar
Twigg, J. & Atkin, K. (1994). Carers Perceived: Policy and Practice in Informal Care. Buckingham, UK: Open University Press.Google Scholar
Zarit, S. & Edwards, A. (1996). Family caregiving: Research and clinical intervention. In Handbook of the Clinical Psychology of Ageing, Woods, R. (ed.), pp. 333–368. London: John Wiley.Google Scholar
Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655.CrossRefGoogle ScholarPubMed