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Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

Macarena Quesada, Manuel Madrigal, Aurelio Luna, Maria D Perez-Carceles

Abstract


Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients.

Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving.

Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).

Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.

 

 

 

 


Keywords


Activities of Daily Living (ADL), associated factors, family caregivers, measurement tools, palliative care, person-centered healthcare, psychosocial wellbeing, quality of life, Spain

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References


Cankurtaran Őntaş O. & Tunç, M. (2012). Caregiving of aged people, either professional job or acquiring merit in God's sight: an example of qualitative research. Archives of Gerontology and Geriatrics 55 (1) 200-204.

United Nations. (2004). World Population Prospects: The 2004 Revision.

Spanish Statistics Office. (2012). Number of deaths by Cause of Death. Press release. http://www.ine.es/prensa/np830.pdf (accessed September 2014).

National Hospice and Palliative Care Organization.(2012).History of Hospice Care. http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285 (accessed May 2014).

Murray, C.J.L. & Lopez, A.D. (1997).Alternative projections of mortality and disability by causes 1990-2020: Global burden of disease study. Lancet 349 (9064) 1498-1504.

Turkoglu, N. & Kilic, D. (2012). Effects of care burdens of caregivers of cancer patients on their quality of life. Asian Pacific Journal of Cancer Prevention 13 (8) 4141-4145.

Hacialioglu, N., Ozer, N., Yilmaz Karabulutlu, E., Erdem, N. & Erci, B. (2010). The quality of life of family caregivers of cancer patients in the east of Turkey. European Journal of Oncology Nursing 14 (3) 211-217.

Francis, L.E., Worthington, J., Kypriostakis, G. & Rose, J.H. (2010). Relationship quality and burden among caregivers for late-stage cancer patients. Supportive Care Cancer 18 (11) 1429-1436.

Given, B., Wyatt, G., Given, C., Sherwood, P., Gift, A., DeVoss, D. & Rahbar, M. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nurse Forum 31 (6) 1105-1117.

Wilkinson, A.M. & Lynn, J. (2005). Caregiving for advanced chronic illness patients. Techniques in Regional Anesthesia and Pain Management 9, 122-132.

WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine 28 (3) 551–558.

Sepúlveda, C., Marlin, A., Yoshida, T. & Ullrich, A. (2002). Palliative Care: the World Health Organization's global perspective. Journal of Pain and Symptom Management 24 (2) 91-96.

WHOQOL Group. (1993). Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research 2 (2) 153-159.

Shelkey, M. & Wallace, M. (1999). Katz Index of Independence in Activities of Daily Living. Journal of Gerontological Nursing 25 (3) 8-9.

Lucas-Carrasco R. (2011). The WHO quality of life (WHOQOL) questionnaire: Spanish development and validation studies. Quality of Life Research 21 (1) 161-165.

McGuire, D.B., Grant, M. & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook 60 (6) 351-356.

Goren, A., Gilloteau, I., Lees, M. & DaCosta Dibonaventura, M. (2014). Quantifying the burden of informal caregiving for patients with cancer in Europe. Supportive Care Cancer 22 (6) 1637-1646.

Kissane, D.W., McKenzie, M., McKenzie, D.P., Forbes, A., O'Neill, I. & Bloch, S. (2003). Psychosocial morbidity associated with patterns of family functioning in palliative care: baseline data from the Family Focused Grief Therapy controlled trial. Palliative Medicine 17, 527-537.

Fegg, M.J., Brandstätter, M., Kögler, M.,Hauke, G., Rechenberg-Winter, P., Fensterer, V., Küchenhoff. H., Hentrich, M., Belka, C. & Borasio, G.D. (2013). Existential behavioural therapy for informal caregivers of palliative patients: a randomised controlled trial. Psycho-Oncology 22, 2079-2086.

Morishita, M. & Kamibeppu, K. (2014). Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. Supportive Care Cancer 22 (10) 2687-2696.

Alptekin, S., Gönüllü, G., Yücel, I. & Yariş, F. (2009). Characteristics and quality of life analysis of caregivers of cancer patients. Medical Oncology 27 (3) 607-617.

Drabe, N., Zwahlen, D., Büchi, S., Moergeli, H., Zwahlen, R.A. & Jenewein, J. (2008). Psychiatric morbidity and quality of life in wives of men with long-term head and neck cancer. Psycho-Oncology 17 (2) 199-204.

Fatoye, F.O., Komolafe,M.A., Adewuya, A.O. & Fatoye, G.K. (2006). Emotional distress and self-reported quality of life among primary caregivers of stroke survivors in Nigeria. East African Medical Journal 83 (5) 271-279.

Northouse, L.L., Katapodi, M.C., Song, L., Zhang, L. & Mood, D.W. (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians 60 (5) 317-339.

Hagedoorn, M., Sanderman, R., Bolks, H.N., Tuinstra, J. & Coyne, J.C. (2008). Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychological Bulletin 134 (1) 1-30.

Ussher, J.M. & Sandoval, M. (2008). Gender differences in the construction and experience of cancer care: the consequences of the gendered positioning of carers. Psychology and Health 23 (8) 945-963.

Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M.C., et al. (2005). Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry 20 (2) 168-174.

Brandstätter, M., Kögler, M., Baumann, U., Fensterer, V., Küchenhoff, H., Borasio, G.D. & Fegg, M.J. (2014). Experience of meaning in life in bereaved informal caregivers of palliative care patients. Supportive Care Cancer 22 (5) 1391-1399.

Chen, M.L., Chu, L. & Chen, H.C. (2004). Impact of cancer patients´ quality of life on that of spouse caregivers. Supportive Care Cancer 12 (7) 469-475.

Wadhwa, D., Burman, D., Swami, N., Rodin, G., Lo, C. & Zimmermann, C. (2013). Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho-Oncology 22 (2) 403-410.

Rees, J., O´Boyle, C. & MacDonagh, R. (2001). Quality of life: impact of chronic illness on the partner. Journal of the Royal Society of Medicine 94 (11) 563-566.

Fitzell, A. & Pakenham, K.I. (2010). Application of a stress and coping model to positive and negative adjustment outcomes in colorectal cancer caregiving. Psycho-Oncology 19 (11) 1171-1178.

Kim, Y., Baker, F. & Spillers, R.L. (2007). Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. Journal of Pain and Symptom Management 34 (3) 294-304.

Matthews, B., Baker, F. & Spillers, R. (2004). Family caregivers’ quality of life: influence of health protective stance and emotional strain. Psychology and Health 19, 625-641.

Perz, J., Ussher, J.M., Butow, P. & Wain, G. (2011). Gender differences in cancer carer psychological distress: an analysis of moderators and mediators. European Journal of Cancer Care 20 (5) 610-619.

Kim, Y. & Spillers, R.L. (2010). Quality of life of family caregivers at 2 years after a relative’s cancer diagnosis. Psycho-Oncology 19 (4) 431-440.

Thurn, T., Brandstätter, M., Fensterer, V., Küchenhoff, H. & Fegg, M.J. (2014). Existential behavioral therapy for informal caregivers of palliative patients: Barriers and promoters of support utilization. Palliative and Supportive Care 6, 1-10.

Spillman, B.C. & Pezzin, L.E. (2000). Potential and active family caregivers: changing networks and the “sandwich generation”. Milbank Quarterly 78 (3) 347-374.

Kurtz, M.E., Kurtz, J.C., Given, C.W. & Given, B.A. (2004). Depression and physical health among family caregivers of geriatric patients with cancer - a longitudinal view. Medicine Science Monitor 10 (8) 447-456.

Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R. & van den Bos, G.A. (1999). Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86 (4) 577-588.

Hoefman, R., Al-Janabi, H., McCaffrey, N., Currow, D. & Ratcliffe, J. (2015). Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Quality of Life Research 24 (5) 1255-1273.

Goranitis, I., Coast, J. & Al-Janabi, H. (2014). An investigation into the construct validity of the Carer Experience Scale (CES). Quality of Life Research 23 (6) 1743-1752.

Ferrara,M., Langiano,E., Di Brango,T., De Vito, E., Di Cioccio,L. & Bauco, C. (2008). Prevalence of stress, anxiety and depression in with Alzheimer caregivers. Health and Quality of Life Outcomes 6, 93.

Götze, H., Brähler, E., Gansera, L., Polze, N. & Köhler, N. (2014). Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care. Supportive Care Cancer 22, 2775-2782.

Higginson, I.J. & Sen-Gupta, G.J.A. (2000). Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. Journal of Palliative Medicine 3 (3) 287-300.

Wright, A.A., Keating, N.L., Balboni, T.A., Matulonis, U.A., Block, S.D. & Prigerson, H.G. (2010). Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. Journal of Clinical Oncology 28 (29) 4457-4464.

Hales, S., Chiu, A., Husain, A., Braun, M., Rydall, A., Gagliese, L., Zimmermann, C. & Rodin, G. (2014). The quality of dying and death in cancer and its relationship to palliative care and place of death. Journal of Pain and Symptom Management 48 (5) 839-851.

Paiva, B.S.R., Lopes de Carvalho, A., Kolcaba, K. & Paiva, C.E. (2014). Validation of the Holistic Comfort Questionnaire - caregiver in Portuguese-Brazil in a cohort of informal caregivers of palliative care cancer patients. Supportive Care Cancer, 23 (2) 343-351.

Miles, A. & Asbridge, J.E. (2014). Carers - vital partners in increasing the person-centeredness of health and social care systems. European Journal for Person Centered Healthcare 2 (4) 421-424.




DOI: http://dx.doi.org/10.5750/ejpch.v3i3.1003

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