Journal of Gerontological Nursing, 2013;39(7):40–47
Abstract
Heart failure requires complex home management, which is typically performed by a spouse. Yet little is known about the actual “work” of caregiving in individuals with heart failure. The purpose of this study was to describe the types of work manifested in long-term spousal caregiving for older adults across the progression of heart failure. Secondary qualitative analysis was performed of the in-depth serial interview data of 20 spousal caregivers of individuals with heart failure age 62 and older, collected monthly over 12 to 14 months. The work of spousal caregiving impacted all aspects of the lives of spouses and was constant over time and across the course of heart failure. The work of caregiving was always present, even during times of medical stability, but the type of work and intensity varied throughout the course of the illness. Caregivers should be assessed for unmet needs throughout the course of heart failure, not just during the individuals’ exacerbations or hospitalizations. [Journal of Gerontological Nursing, 39(7), 40–47.]
- Administration on Aging. (2012). National Family Caregiver Support Program. Retrieved from http://www.aoa.gov/aoa_programs/hcltc/caregiver/index.aspx Google Scholar
- Boyd K.J., Murray S.A., Kendall M., Worth A., Frederick Benton T., Clausen H. (2004). Living with advanced heart failure: A prospective, community based study of patients and their carers. European Journal of Heart Failure, 6, 585–591. Crossref MedlineGoogle Scholar
- Clark A.M., Davidson P., Currie K., Karimi M., Duncan A.S., Thompson D.R. (2010). Understanding and promoting effective self-care during heart failure. Current Treatment Options in Cardiovascular Medicine, 12, 1–9.
10.1007/s11936-009-0053-1 Crossref MedlineGoogle Scholar - Clark A.M., Reid M.E., Morrison C.E., Capewell S., Murdoch D.L., McMurray J.J. (2008). The complex nature of informal care in home-based heart failure management. Journal of Advanced Nursing, 61, 373–383.
10.1111/j.1365-2648.2007.04527.x Crossref MedlineGoogle Scholar - Clark P.C., Dunbar S.B. (2003). Family partnership intervention: A guide for a family approach to care of patients with heart failure. AACN Clinical Issues, 14, 467–476
10.1097/00044067-200311000-00008 . Crossref MedlineGoogle Scholar - Corbin J.M., Strauss A.L. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass. Google Scholar
- Criteria Committee for the New York Heart Association. (1994). Nomenclature and criteria for diagnosis of diseases of the heart and great vessels (9th ed.). New York: Little Brown & Co. Google Scholar
- Evangelista L.S., Dracup K., Doering L., Westlake C., Fonarow G.C., Hamilton M. (2002). Emotional well-being of heart failure patients and their caregivers. Journal of Cardiac Failure, 8, 300–305
10.1054/jcaf.2002.128005 . Crossref MedlineGoogle Scholar - Feinberg L., Reinhard S.C., Houser A., Choula R. (2011). Valuing the invaluable: 2011 update. The growing contributions and costs of family caregiving. Retrieved from http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf Google Scholar
- Given B., Sherwood P.R., Given C.W. (2008). What knowledge and skills do care-givers need?American Journal of Nursing, 108(9 Suppl.), 28–34.
10.1097/01.NAJ.0000336408.52872.d2 Crossref MedlineGoogle Scholar - Goldstein L.H., Atkins L., Landau S., Brown R., Leigh P.N. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36, 865–875
10.1017/S0033291706007124 . Crossref MedlineGoogle Scholar - Hauser J.M., Kramer B.J. (2004). Family caregivers in palliative care. Clinics in Geriatric Medicine, 20, 671–688
10.1016/j.cger.2004.07.003 . Crossref MedlineGoogle Scholar - Houldin A.D. (2007). A qualitative study of caregivers’ experiences with newly diagnosed advanced colorectal cancer. Oncology Nursing Forum, 34, 323–330
10.1188/07.ONF.323-330 . Crossref MedlineGoogle Scholar - Hupcey J.E., Fenstermacher K., Kitko L., Fogg J. (2011). Palliative needs of spousal caregivers of patients with heart failure followed at specialized heart failure centers. Journal of Hospice and Palliative Nursing, 13, 142–150
10.1097/NJH.0b013e31820ce15e . Crossref MedlineGoogle Scholar - Hupcey J.E., Fenstermacher K., Kitko L., Penrod J. (2010). Achieving medical stability: Wives’ experiences with heart failure. Clinical Nursing Research, 19, 211–229.
10.1177/1054773810371119 Crossref MedlineGoogle Scholar - King A.C., Brassington G. (1997). Enhancing physical and psychological functioning in older family caregivers: The role of regular physical activity. Annals of Behavioral Medicine, 19, 91–100
10.1007/BF02883325 . Crossref MedlineGoogle Scholar - Lincoln Y.S., Guba E.G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage. CrossrefGoogle Scholar
- Luttik M.L., Jaarsma T., Moser D., Sanderman R., van Veldhuisen D.J. (2005). The importance and impact of social support on outcomes in patients with heart failure: An overview of the literature. Journal of Cardiovascular Nursing, 20, 162–169. Crossref MedlineGoogle Scholar
- Martensson J., Dracup K., Canary C., Fridlund B. (2003). Living with heart failure: Depression and quality of life in patients and spouses. Journal of Heart and Lung Transplantation, 22, 460–467
10.1016/S1053-2498(02)00818-5 . Crossref MedlineGoogle Scholar - Pattenden J.F., Roberts H., Lewin R.J. (2007). Living with heart failure; Patient and carer perspectives. European Journal of Cardiovascular Nursing, 6, 273–279
10.1016/j.ejcnurse.2007.01.097 . Crossref MedlineGoogle Scholar - Pickens N.D., O’Reilly K.R., Sharp K.C. (2010). Holding on to normalcy and overshadowed needs: Family caregiving at end of life. Canadian Journal of Occupational Therapy, 77, 234–240
10.2182/cjot.2010.77.4.5 . Crossref MedlineGoogle Scholar - Pressler S.J., Gradus-Pizlo I., Chubinski S.D., Smith G., Wheeler S., Wu J., Sloan R. (2009). Family caregiver outcomes in heart failure. American Journal of Critical Care, 18, 149–159.
10.4037/ajcc2009300 Crossref MedlineGoogle Scholar - Riegel B., Moser D.K., Anker S.D., Appel L.J., Dunbar S.B., Grady K.L., Whellan D.J. (2009). State of the science: Promoting self-care in persons with heart failure: A scientific statement from the American Heart Association. Circulation, 120, 1141–1163.
10.1161/CIRCULATIONAHA.109.192628 Crossref MedlineGoogle Scholar - Riegel B., Vaughan Dickson V., Goldberg L.R., Deatrick J.A. (2007). Factors associated with the development of expertise in heart failure self-care. Nursing Research, 56, 235–243
10.1097/01.NNR.0000280615.75447.f7 . Crossref MedlineGoogle Scholar - Roger V.L., Go A.S., Lloyd-Jones D.M., Benjamin E.J., Berry J.D., Borden W.B., Turner M.B. (2012). Heart disease and stroke statistics--2012 update: A report from the American Heart Association. Circulation, 125, e2–e220.
10.1161/CIR.0b013e31823ac046 Crossref MedlineGoogle Scholar - Sayers S.L., Riegel B., Pawlowski S., Coyne J.C., Samaha F.F. (2008). Social support and self-care of patients with heart failure. Annals of Behavioral Medicine, 35, 70–79.
10.1007/s12160-007-9003-x Crossref MedlineGoogle Scholar - Schulz R., Beach S.R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282, 2215–2219
10.1001/jama.282.23.2215 . CrossrefGoogle Scholar - Seltzer M.M., Li L.W. (2000). The dynamics of caregiving: Transitions during a three-year prospective study. The Gerontologist, 40, 165–178
10.1093/geront/40.2.165 . Crossref MedlineGoogle Scholar - Shaw W.S., Patterson T.L., Semple S.J., Ho S., Irwin M.R., Hauger R.L., Grant I. (1997). Longitudinal analysis of multiple indicators of health decline among spousal caregivers. Annals of Behavioral Medicine, 19, 101–109
10.1007/BF02883326 . Crossref MedlineGoogle Scholar - Strauss A.S., Corbin J.M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks: Sage. Google Scholar
- Weitzner M.A., Haley W.E., Chen H. (2000). The family caregiver of the older cancer patient. Hematology/Oncology Clinics of North America, 14, 269–281
10.1016/S0889-8588(05)70288-4 . Crossref MedlineGoogle Scholar
