Care for carers: A concept analysis of support for carers of ill relatives
Corresponding Author
Neltjie C. van Wyk PhD, RN, RM
Department of Nursing Science, University of Pretoria, Pretoria, South Africa
Correspondence Neltjie C. van Wyk, PhD, RN, RM, Department of Nursing Science, University of Pretoria, Private Bag X323, Gezina, Pretoria 0031, South Africa.
Email: [email protected]
Search for more papers by this authorCorresponding Author
Neltjie C. van Wyk PhD, RN, RM
Department of Nursing Science, University of Pretoria, Pretoria, South Africa
Correspondence Neltjie C. van Wyk, PhD, RN, RM, Department of Nursing Science, University of Pretoria, Private Bag X323, Gezina, Pretoria 0031, South Africa.
Email: [email protected]
Search for more papers by this authorAbstract
The aim of the study is to clarify the concept “care for carers,” and enhance our understanding of caring for carers of ill relatives. Healthcare professionals often refer to “care for carers” when discussing methods to support the carers of ill family relatives. These carers do not always receive the support they need. A literature search of electronic databases and search engines, using the keywords carer, caregiver, caring for the carer, caring for the caregiver was done. Peer-reviewed research articles published between 2014 and 2019 and written in the English language were analyzed. Following retrieval, research articles were analyzed to describe the uses, attributes, antecedents, consequences, and empirical referents of the concept “care for carers.” Research articles describing borderline, related, contrary, and illegitimate examples were included. “Care for carers” addresses the unique support needs of those taking care of ill family members. Carers may derive a sense of empowerment from receiving individualized and proactively rendered support. Carers should be supported to develop control over their circumstances, to find meaning in their caring, to become resilient when experiencing challenges, and to confirm their identity as carers of their ill relatives.
REFERENCES
- 1Al-Janabi H, Nicholls J, Oyebode J. The need to “carer proof” healthcare decisions. Br Med J. 2016; 352:i1651.
- 2Willemse E, Anthierens S, Farfan-Portet MI, et al. Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries. BMC Health Serv Res. 2016; 16: 270.
- 3Heath A, Carey LB, Chong S. Helping carers care: an exploratory study of factors impacting informal family carers and their use of aged care services. J Relig Health. 2018; 57: 1146-1167.
- 4Knighting K, O'Brien MR, Roe B, et al. Gaining consensus on family carer needs when caring for someone dying at home to develop the carers’ alert thermometer (CAT): a modified Delphi study. J Adv Nurs. 2015; 72(1): 227-239.
- 5Pini S, Ingleson E, Megson M, Clare L, Wright P, Oyebode JR. A needs-led framework for understanding the impact of caring for a family member with dementia. Gerontologist. 2018; 58(2): e68-e77.
- 6Do YK, Norton EC, Stearns SC, Van, Houtven CH. Informal care and caregiver's health. Health Econ. 2015; 24: 224-237.
- 7Yeandle S, Chou Y-C, Fine M, Larkin M, Milne A. Care and caring: interdisciplinary perspectives on a societal issue of global significance. Int J Care Caring. 2017; 1(1): 3-25.
10.1332/239788217X14866278171183 Google Scholar
- 8Bauer JM, Souse-Poza A. Impacts of informal caregiving on caregiver employment, health, and family. Population Ageing. 2015; 8: 113-145.
- 9Dawson F, Shanahan S, Fitzsimons E, O'Malley G, Mac Giollabhui N, Bramham J. The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress. J Intellectual Disabil Res. 2016; 60(6): 553-563.
- 10Del Rio Lozano M, Del Mar Garcia-Calvente M, Calle-Romero J, Machón-Sobrado M, Larrańaga-Padilla I. Health-related quality of life in Spanish informal caregivers: gender differences and support received. Qual Life Res. 2017; 26: 3227-3238.
- 11Leu A, Frech M, Jung C. Young carers and young adult carers in Switzerland: caring roles, ways into care and the meaning of communication. Health Soc Care Community. 2018; 26: 925-934.
- 12Gusdal AK, Josefsson K, Adolfsson ET, Martin L. Informal caregivers’ experiences and needs when caring for a relative with heart failure. J Cardiovasc Nurs. 2016; 31(4): E1-E8.
- 13Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the caregiver: supporting families of youth with special health care needs. Curr Probl Pediatr Adolesc Health Care. 2017; 47: 190-199.
- 14Galiatsatos P, Nelson K, Hale WD. Caring for the caregiver: identifying the needs of those called to care through partnerships with congregations. J Relig Health. 2017; 56: 946-950.
- 15Lethin C, Leino-Kilpi H, Bleijlevens MHC, et al. Predicting caregiver burden in informal caregivers caring for persons with dementia living at home–a follow-up cohort study. Dementia. 2020; 19: 640-660.
- 16Goren A, Montgomery W, Kahle-Wrobleski K, Nakamura T, Ueda K. Impact of caring for persons with Alzheimer's disease or dementia on caregivers’ health outcomes: findings from a community based survey in Japan. BMC Geriatr. 2016; 16: 122.
- 17Llanque S, Savage L, Rosenburg N, Caserta M. Concept analysis: Alzheimer's caregiver stress. Nurs Forum. 2014; 51(1): 21-31.
- 18Halpern MT, Fiero MH, Bell ML. Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers. Qual Life Res. 2017; 26: 1587-1595.
- 19Walker LO, Avant KC. Strategies for Theory Construction in Nursing. 5th ed. Pearson Prentice-Hall; 2011.
- 20Carduff E, Jarvis A, Highet G, et al. Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: a feasibility study. BMC Fam Pract. 2016; 17: 18.
- 21Larkin M, Henwood M, Milne A. Carer-related research and knowledge: findings from a scoping review. Health Soc Care Community. 2019; 27: 55-67.
- 22MacKenzie MA, Meghani SH, Buck HG, Riegel B. Does diagnosis make a difference? Comparing hospice care satisfaction in matched cohorts of heart failure and cancer caregivers. J Palliat Med. 2015; 18(12): 1008-1014.
- 23Lethin C, Leino-Kilpi H, Roe B, et al. Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study. BMC Geriatr. 2016; 16: 32.
- 24White CL, Overbaugh KJ, Pickering CEZ, et al. Advancing care for family caregivers of persons with dementia through caregiver and community partnerships. Res Involv Engagem. 2018; 4(1): 1-7.
- 25Wittenberg E, Goldsmith J, Ferrell B, Ragan SL. Promoting improved family caregiver health literacy: evaluation of caregiver communication resources. Psychooncology. 2017; 26: 935-942.
- 26Jeong J-S, Kim Y, Chon M-G. Who is caring for the caregiver? The role of cybercoping for dementia caregivers. Health Commun. 2018; 33(1): 5-13.
- 27Solomi VL, Casiday RE. In sickness and in health: the strains and gains of caring for a chronically ill or disabled spouse. Chronic Illn. 2017; 13(2): 75-87.
- 28Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016; 122: 1987-1995.
- 29Scott JL, Dawkins S, Quinn MG, et al. Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers. Aging Ment Health. 2016; 20(8): 793-803.
- 30Seddon D, Robinson C. Carer assessment: continuing tensions and dilemmas for social care practice. Health Soc Care Community. 2015; 23(1): 14-22.
- 31Knowles S, Combs R, Kirk S, Griffiths M, Patel N, Sanders C. Hidden cring, hidden carers? Exploring the experience of carers for people with long-term conditions. Health Soc Care Community. 2016; 24(2): 203-213.
- 32Sklenarova H, Krümpelmann A, Haun MW, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015; 121: 1513-1519.
- 33Svendsboe EJ, Testad I, Terum T, et al. Patterns of carer distress over time in mild dementia. Int J Geriatr Psychiatry. 2018; 33: 987-993.
- 34Phillips SS, Ragas DM, Tom LS, Hajjar N, Dong X, Simon MA. Voices of informal caregivers and community stakeholders: whether and how to develop an informal caregiver training program. J Community Health. 2016; 41: 550-556.
- 35Yesufu-Udechuku A, Harrison B, Mayo-Wilson E, et al. 2015 Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. Br J Psychiatry. 2015; 206: 268-274.
- 36Yu H, Wang X, He R, Liang R, Zhou L. Measuring the caregiver burden of caring for community-residing people with Alzheimer's disease. Plos One. 2015; 10:e0132168.
- 37Tan JYS, Lim HA, Kuek NMY, Kua EH. Caring for the caregiver while caring for the patient: exploring the dyadic relationship between patient spirituality and caregiver quality of life. Support Care Cancer. 2015; 23: 3403-3406.
- 38Gouin J-P, Da Estrela C, Desmarais K, Barker ET. The impact of formal and informal support on health in the context of caregiving stress. Fam Relat. 2016; 65: 191-206.
- 39Donnellan W, Bennett KM, Soulsby LK. How does carer resilience change over time and care status? A qualitative longitudinal study. Aging Ment Health. 2019; 23(11): 1510-1516.
- 40Cherry MG, Ablett JR, Dickson JM, Powell D, Sikdar S, Salmon P. A qualitative study of the processes by which carers of people with dementia derive meaning from caring. Aging Ment Health. 2019; 23(1): 69-76.