Role of Novice Family Caregivers of Dependent Adults: A Scoping Review
DOI:
https://doi.org/10.15649/cuidarte.1368Keywords:
Family Caregiver, Disabled Persons, Adult, Caregivers, Lived ExperienceAbstract
Introduction: An increase in the number of adults with dependencies, disabilities or care needs has led to the emergence of family caregivers, who regularly assume this responsibility without any previous training or knowledge, which may result in compromising their performance in this new role and their outcomes in care recipients. Materials and Methods: A scoping review was conducted following Arksey and O'Malley's scoping framework, which included the review of studies in English and Spanish that are available in online databases to extract the information related to the adoption of the role of novice family caregiver of dependent adults. Results: A total of 42 articles was selected from which five major themes were identified, including sociodemographic trends, course and dynamics over time, transitions involved in this new role, participation in decision making, and domains and impacts on caregivers. Discussion: Performing the role of a novice family caregiver of dependent adults involves acquiring a series of competencies, knowledge and skills, as well as requiring adequate social support, all of which are aspects that should be explored, recognized and addresses by nursing professionals. Conclusions: This study provides information to understand the experiences and implications of becoming a novice caregiver, thus enabling healthcare professionals to adapt interventions aimed to support caregivers and improve their well-being.
How to cite this article: Esquivel Garzón Natalia, Carreño Moreno Sonia, Chaparro Díaz Lorena Rol del cuidador familiar novel de adultos en situación de dependencia: scoping review. Revista Cuidarte. 2021;12 2 :e1368. http://dx.doi.org/10.15649/cuidarte.1368
References
Cheng H, Chair S, Chau J. Effectiveness of a strength-oriented psychoeducation on caregiving competence, problem-solving abilities, psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial. Int J Nurs Stud. 2018;87:84–93. https://doi.org/10.1016/j.ijnurstu.2018.07.005
Davidson P, Abshire M, Paull G, Szanton S. Family caregivers: Important but often poorly understood. J Clin Nurs. 2018;27 23–24 :4242–4. https://doi.org/10.1111/jocn.14654
World Health Organization. Current and future long-term care needs: An análisis based on the 1990 WHO study The Global Burden Disease and the International Classification of the Functioning, Disability and Health. Geneva, Switzerland; 2002. Disponible en: https://apps.who.int/iris/bitstream/handle/10665/67349/WHO_NMH_CCL_02.2.pdf?sequence=1&isAllowed=y
United Nations. Department of Economic and Social Affairs. Disability and Development Report. Realizing the Sustainable Development Goals by, for and with persons with disabilities. 2018. p. 258. Disponible en: https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2019/07/disability-report-chapter2.pdf
Roth G, Abate D, Abate KH, Abay S, Abbafati C, Abbasi N, et al. Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2018;392 10159 . https://doi.org/10.1016/S0140-673618 32203-7
Anauati MV, Galiani S, Weinschelbaum F. The rise of noncommunicable diseases in Latin America and the Caribbean: challenges for public health policies. Lat Am Econ Rev 2015;24 11 . https://doi.org/10.1007/s40503-015-0025-7
United Nations, Department of Economic and Social Affairs PD. World Population Ageing 2019. New York; 2020. p. 1–64. Disponible en: https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulationAgeing2019-Report.pdf
Ministerio de Salud y Protección Social. Sala situacional de las Personas con Discapacidad [Internet]. 2018. p. 1–37. Disponible en: https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/PS/sala-situacional-discapacidad-junio-2018.pdf
Jang, Soong-Nang Avendano M, Kawach I. Informal Caregiving Patterns in Korea and European Countries: A Cross-National Comparison. Asian Nurs Res. 2012;6 1 :19–26. https://doi.org/10.1016/j.anr.2012.02.002
Carreño S, Chaparro L. Adoption of the family caregiver role of the chronic patient: a tool to assess the transition. Investig Andin. 2018;20 36 :39–54. https://doi.org/10.33132/01248146.968
Carretero S, Garcés J, Ródenas F, Sanjosé V. The informal caregiver’s burden of dependent people: Theory and empirical review. Arch Gerontol Geriatr [Internet]. julio de 2009;49 1 :74–9. https://doi.org/10.1016/j.archger.2008.05.004
Sautter JM, Tulsky JA, Johnson KS, Olsen MK, Burton-Chase AM, Lindquist JH. Caregiver Experience During Patients’ Advanced Chronic Illness and Last Year of Life. J Am Geriatr Soc. 2014;62 6 :1082–90. https://doi.org/10.1111/jgs.12841
Arksey H, O’Malley L. Scoping studies: Towards a methodological framework. Int J Soc Res Methodol Theory Pract. 2005;8 1 :19–32. https://doi.org/10.1080/1364557032000119616
Pham MT, Rajić A, Greig JD, Sargeant JM, Papadopoulos A, Mcewen SA. A scoping review of scoping reviews : advancing the approach and enhancing the consistency. Res Synth Methods. 2014;5 4 :371–85. https://doi.org/10.1002/jrsm.1123
Santillán García A. Lectura crítica de la evidencia científica. Enf Cardiol. 2014;21 63 :15–8. Disponible en: https://www.enfermeriaencardiologia.com/wp-content/uploads/63_01.pdf
Peters M, Godfrey C, McInerney P, Munn Z, Tricco A, Khalil H. Scoping reviews. En: Aromataris, E. JBI Manual for Evidence Synthesis: JBI. 2020.406-451. Disponible en: https://synthesismanual.jbi.global.
Colquhoun HL, Levac D, O’Brien KK, Straus S, Tricco AC, Perrier L, et al. Scoping reviews: Time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67 12 :1291–4. http://dx.doi.org/10.1016/j.jclinepi.2014.03.013
Wolff J, Spillman B, Freedman V, Kasper J. A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities. JAMA Intern Med. 2016;176 3 :372–379. https://doi.org/10.1001/jamainternmed.2015.7664
Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist. 2005;45 1 :90–106. https://doi.org/10.1093/geront/45.1.90
Toribio-Díaz ME, Medrano-Martínez V, Moltó-JordácI J, Beltrán-Blascod I. Characteristics of informal caregivers of patients with dementia in Alicante province. Neurología. 2013;28 2 :95–102. https://doi.org/10.1016/j.nrl.2012.03.010
Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral P, Martínez-Riera JR. Gender differences regarding informal caregivers of older people. J Nurs Scholarsh. 2012;44 4 :349–57. https://doi.org/10.1111/j.1547-5069.2012.01477.x
Schulz R, Beach R, Cook T, Martire L, Tomlinson J, Monin K. Predictors and Consequences of Perceived Lack of Choice in Becoming an Informal Caregiver. Aging Ment Heal. 2012;16 6 :712–721. https://doi.org/10.1080/13607863.2011.651439
Godfrey W, Yorgason J, Zhang Y, Hicken B, Chen W, Rupper R. Variability in spousal perceptions of caregiving and its relationship to older caregiver health outcomes. J Gen Intern Med. 2018;33:1504–1511. https://doi.org/10.1007/s11606-018-4408-8
Martins G, Corrêa L, Caparrol AJ de S, Do Santos P, Brugnera LM, Gratão AC. Sociodemographic and health characteristics of formal and informal caregivers of elderly people with Alzheimer’s Disease. Esc Anna Nery. 2019;23 2 . https://doi.org/10.1590/2177-9465-ean-2018-0327.
Lüdecke D, Mnich E, Kofahl C. The impact of sociodemographic factors on the utilisation of support services for family caregivers of elderly dependents – results from the German sample of the EUROFAMCARE study. Psycho-Social-Medicine. 2012;9. https://doi.org/10.3205/psm000084
Yakubu Y, Schutte DW. Caregiver attributes and socio-demographic determinants of caregiving burden in selected low-income communities in cape town, South Africa. J Compassionate Heal Care. 2018;5 3 . https://doi.org/10.1186/s40639-018-0046-6
Monin J k, Schulz R. Interpersonal effects of suffering in older adult caregiving relationships. Psychol Aging. 2009;24 3 :681–95. https://doi.org/10.1037/a0016355
Seltzer MM, Li L w. The dynamics of caregiving: Transitions during a three-year prospective study. Gerontologist. 2000;40 2 :165–178. https://doi.org/10.1093/geront/40.2.165
Penrod J, Hupcey J, Baney B, Loeb S. End-of-life caregiving trajectories. Clin Nurs Res. 2011;20 1 :7–24. https://doi.org/10.1177/1054773810384852
Tang S, Liu LN, Lin C-K, Chung JH, Hsieh CH, Chou W-C, et al. Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients. J Pain Symptom Manag. 2014;48 5 :863–874.: https://doi.org/10.1016/j.jpainsymman.2014.01.011
Carpentier N, Bernard P, Gernier A, Guberman N. Using the life course perspective to study the entry into the illness trajectory: The perspective of caregivers of people with Alzheimer’s disease. Soc Sci Med. 2010;70 10 :1501–8. https://doi.org/10.1016/j.socscimed.2009.12.038
Giovannetti E., Wolff J. Cross-survey differences in national estimates of numbers of caregivers of disabled older adults. Milbank Q. 2010;88 3 :310–49. https://doi.org/10.1111/j.1468-0009.2010.00602.x
Chadiha L, Feld S, Rafferty J. Likelihood of African American primary caregivers and care recipients receiving assistance from secondary caregivers: A rural-urban comparison. J Appl Gerontol. 2011;30 40 :422–42. https://doi.org/10.1177/0733464810371099
Freedman V, Spillman B. Disability and care needs among older Americans. Milbank Q. 2014;92 3 :509–41. https://doi.org/10.1111/1468-0009.12076
Black B, Johnston D, Rabins P, Morrison A, Lyketsos C, Samus QM. Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the Maximizing Independence at Home Study. J Am Geriatr Soc. 2013;61 12 :2087–95. https://doi.org/10.1111/jgs.12549
Adams K. The transition to caregiving: The experience of family members embarking on the dementia caregiving career. J Gerontol Soc Work. 2006;47 3–4 :3–29. https://doi.org/10.1300/J083v47n03_02
Bulley C, Shiels J, Wilkie K, Salisbury L. Carer experiences of life after stroke - A qualitative analysis. Disabil Rehabil. 2010;32 17 :1406–1413. https://doi.org/10.3109/09638280903531238
Plank A, Mazzoni V, Cavada L. Becoming a caregiver: new family carers’ experience during the transition from hospital to home. J Clin Nurs. 2012;21 13–14 :2072–82. https://doi.org/10.1111/j.1365-2702.2011.04025.x
Donorfio L, Kellett K. Filial responsibility and transitions involved: A qualitative exploration of caregiving daughters and frail mothers. J Adult Dev. 2006;13 3 :158–167. https://doi.org/10.1007/s10804-007-9025-4
Cecil R, Thompson K, Parahoo K, McCaughan E. Towards an understanding of the lives of families affected by stroke: A qualitative study of home carers. J Adv Nurs. 2013;69 8 :1761–1770. https://doi.org/10.1111/jan.12037
Haley W, Allen J, Grant J, Clay O, Perkins M, Roth D. Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiological study. Stroke. 2009;40 6 :2129–2133. https://doi.org/10.1161/STROKEAHA.108.545269
Kim Y, Schulz R. Family caregivers’ strains: Comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health. 2008;20 5 :483–503. https://doi.org/10.1177/0898264308317533
Pereira H, Rebelo MA. Sudden informal caregivers: the lived experience of informal caregivers after an unexpected event. J Clin Nurs. 2011;20 17–18 :2448–57. https://doi.org/10.1111/j.1365-2702.2010.03644.x
Buschenfeld K, Morris R, Lockwood S. The experience of partners of young stroke survivors. Disabil Rehabil. 2009;31 20 :1643–1651. https://doi.org/10.1080/09638280902736338
Schulz R, Sherwood P. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108 9 :23–7. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c
Poort H, Peters M, Gielissen M. Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients’ Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement. J Pain Symptom Manag. 2016;52 3 :336‐344. https://doi.org/10.1016/j.jpainsymman.2016.02.017
Beach S, Schulz R, Yee J, Jackson S. Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the Caregiver Health Effects Study. Psychol Aging. 2000;15 2 :259–71. https://doi.org/10.1037//0882-7974.15.2.259
Dunkle R, Feld S, Lehning A, Kim H, Shen H, Kim M. Does becoming an ADL spousal caregiver increase the caregiver’s depressive symptoms?. Res Aging. 2014;36 6 :655–682. https://doi.org/10.1177/0164027513516152
Valimaki T, Vehvilainen-Julkunen K, Pietila A, Koivisto A. Life orientation in Finnish family caregivers’ of persons with Alzheimer’s disease: A diary study. Nurs Heal Sci. 2012;14 4 :480–487. https://doi.org/10.1111/j.1442-2018.2012.00721.x
Silva-Smith A. Restructuring Life: Preparing for and Beginning a New Caregiving Role. J Fam Nurs. 2007;13 1 :99. https://doi.org/10.1177/1074840706297425
Moral-Fernández L, Frías-Osuna A, Moreno-Cámara S, Palomino-Moral P, Del-Pino-Casado R. The first moments of the carer: The process of becoming a caregiver of a dependent elderly relative. Aten Primaria. 2018;50 5 :282–90. https://doi.org/10.1016/j.aprim.2017.05.008
Edwards S, Olson K, Koop P, Northcott, H. Patient and Family Caregiver Decision Making in the Context of Advanced Cancer. Cancer Nurs. 2012;35 3 :178–86. https://doi.org/10.1097/NCC.0b013e31822786f6
Garvelink M, Ngangue P, Adekpedjou R, Diouf N, Goh L, Blair L, et al. Synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones. Health Aff. 2016;35 4 :619–26. https://doi.org/10.1377/hlthaff.2015.1375
Moral-Fernández L, Frías-Osuna A, Moreno-Cámara S, Palomino-Moral P, Del-Pino-Casado R. Primeros momentos del cuidado: el proceso de convertirse en cuidador de un familiar mayor dependiente. Aten Primaria. 2018;50 5 :282–90. https://doi.org/10.1016/j.aprim.2017.05.008
Williams S, Zimmerman S, Williams C. Family Caregiver Involvement for Long-Term Care Residents at the End of Life. Journal of Gerontol. 2012;67 5 :595–604. https://doi.org/10.1093/geronb/gbs065
Pérez-Ordoñez F, Frías-Osuna A, Romero-Rodríguez Y, Del-Pino-Casado R. Coping strategies and anxiety in caregivers of palliative cancer patients. Eur J Cancer Care. 2016;25 4. https://doi.org/10.1111/ecc.12507
Darragh A, Lavender S, Tanner J, Vogel K, Campo M. Musculoskeletal Discomfort, Physical Demand, and Caregiving Activities in Informal Caregivers. J Appl Gerontol. 2015;34 6 :734–60. https://doi.org/10.1177/0733464813496464
Suzuki K, Tamakoshi K, Sakakibara H. Caregiving activities closely associated with the development of low‐back pain among female family caregivers. J Clin Nurs. 2016;25 15–16 :2156–67. https://doi.org/10.1111/jocn.13167
Pope N, Giger J, Lee J, Ely G. Predicting Personal Self-Care in Informal Caregivers. Soc Work Health Care. 2017;56 9 :822–39. https://doi.org/10.1080/00981389.2017.1344755
Bright T, Kuper H. A Systematic Review of Access to General Healthcare Services for People with Disabilities in Low and Middle Income Countries. Int J Environ Res Public Heal. 2018;15 9 . https://doi.org/10.3390/ijerph15091879
Sprung S, Laing M. Young carer awareness, identification and referral. Br J Community Nurs. 2017;20 8 . https://doi.org/10.12968/bjcn.2017.22.8.398
Garcia‐Ptacek S, Dahlrup B, Edlund A, Wijk H, Eriksdotter M. The caregiving phenomenon and caregiver participation indementia. Scand J Caring Sci. 2019;33:255–65. https://doi.org/10.1111/scs.12627
Florez E, Rivas E, Seguel F. Burden level in performing the role of family caregivers of elderly with severe dependence. Cienc y enfermería. 2012;18 1 :29–41 https://doi.org/10.4067/S0717-95532012000100004.
Teixeira MJ, Abreu W, Costa N, Maddocks M. Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal. BMC Palliat Care. 2020;19 73 . https://doi.org/10.1186/s12904-020-00583-4
Lethin C, Hallberg I, Karlsson S, Janlov A-C. Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease. Scand J Caring Sci. 2016;30 3 :526–34. https://doi.org/10.1111/scs.12275
Published
How to Cite
Altmetrics
Downloads
License
Journal Cuidarte, scientific publication of open access, is licensed under a Creative Commons Attribution (CC BY-NC), which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Any other form of use such as reproduction, transformation, public communication or distribution, for profit, requires the prior authorization of the University of Santander UDES.
The names and e-mail addresses entered in the Journal Cuidarte will be used exclusively for the purposes stated by this magazine and will not be available for any other purpose or other person.
The articles published in the Journal Cuidarte represent the criteria of their authors and do not necessarily constitute the official opinion of the University of Santander UDES.