Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-26T00:57:08.861Z Has data issue: false hasContentIssue false

The experience of caring for an older relative in Chile: going beyond the burden of care

Published online by Cambridge University Press:  09 November 2020

Josefa Palacios*
Affiliation:
Millennium Nucleus for the Study of the Life Course and Vulnerability (MLIV), Chile Escuela de Gobierno, Pontificia Universidad Católica de Chile, Santiago, Chile
Pedro Pérez-Cruz
Affiliation:
Millennium Nucleus for the Study of the Life Course and Vulnerability (MLIV), Chile Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile
Andrew Webb
Affiliation:
Millennium Nucleus for the Study of the Life Course and Vulnerability (MLIV), Chile Instituto de Sociología, Pontificia Universidad Católica de Chile, Santiago, Chile
*
*Corresponding author. Email: [email protected]

Abstract

Care in Chile, as in most Latin American countries, remains largely the responsibility of female family members in informal arrangements with little government support. The analysis of caring for a dependent older person has commonly been approached from the burden of care perspective, focusing on the tasks carried out, the time spent providing care and the negative (burdensome) consequences for the care-giver. This study reveals the daily experiences of family care-givers of older people through a thematic data analysis of 42 interviews with main family carers of an older person as experienced by the carers themselves. Findings highlight the complex nature of care work. Tasks carried out do not necessarily relate to the intensity of the care experience or a negative experience. Care-givers can work long hours providing care and still feel comfortable and find the experience emotionally rewarding. Care-givers might also carry out only a few tasks and experience pressure. The broader social and economic context can generate constraints that make a specific set of tasks easier or harder on the carer, but these contextual factors do not fully explain the experience of care. Relations, and particularly those that carry an emotional component such as the carer-older person, carer-siblings and carer-spouse, must be considered alongside the tasks and the difficulties or potential constraints of the context to understand the care experience.

Type
Article
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Anadón, M and Guillemette, F (2006) La recherché qualitative est-elle nécessairement inductive. Recherches qualitatives 5, 2637.Google Scholar
Ayres, L (2000) Narratives of family caregiving: the process of making meaning. Research in Nursing and Health 23, 424434.3.0.CO;2-W>CrossRefGoogle ScholarPubMed
Batthyány, K (2013) Cuidado de personas dependientes y género. In Aguirre, R (ed.), Las bases invisibles del bienestar social: el trabajo no remunerado en Uruguay. Montevideo: UNIFEM, pp. 87123.Google Scholar
Bittman, M, Fast, J, Fisher, K and Thomson, C (2004) Making the invisible visible: the life and time(s) of informal caregivers. In Folbre, N and Bittman, M (eds), Family Time: The Social Organization of Care. London: Routledge, pp. 6990.CrossRefGoogle Scholar
Bover, A (2004) Cuidadores informales de salud del ámbito domiciliario: percepciones y estrategias de cuidado ligadas al género y a la generación (Doctoral dissertation). Universitat de les Illes Balears, Palma, Spain.Google Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77101.CrossRefGoogle Scholar
Brody, EM (2003) Women in the Middle: Their Parent-Care Years. New York, NY: Springer.Google Scholar
Call, KT, Finch, MA, Huck, SM and Kane, RA (1999) Caregiver burden from a social exchange perspective: caring for older people after hospital discharge. Journal of Marriage and Family 61, 688699.CrossRefGoogle Scholar
Campéon, A, Le Bihan, B and Martin, C (2012) La prise en charge des personnes âgées dépendantes en Europe: le vécu des aidants familiaux. Vie sociale 4, 111127.CrossRefGoogle Scholar
Carmichael, F and Charles, S (1998) The labour market costs of community care. Journal of Health Economics 17, 747765.CrossRefGoogle ScholarPubMed
CELADE (2020) Observatorio demográfico de América Latina y el Caribe 2019: proyecciones de población. Santiago: CELADE/CEPAL.Google Scholar
Choi, S and Seo, J (2019) Analysis of caregiver burden in palliative care: an integrated review. Nursing Forum 54, 280290.CrossRefGoogle ScholarPubMed
Connell, PJ (2003) A Phenomenological Study of the Lived Experiences of Adult Caregiving Daughters and Their Elderly Mothers (Doctoral dissertation). University of Florida, Gainesville, FL.Google Scholar
Dautzenberg, MG, Diederiks, JP, Philipsen, H and Tan, FE (1999) Multigenerational caregiving and well-being: distress of middle-aged daughters providing assistance to elderly parents. Women and Health 29, 5774.CrossRefGoogle ScholarPubMed
De la Cuesta, C (2009) El cuidado familiar: una revisión crítica. Investigación y educación en enfermería 27, 96102.Google Scholar
Duxbury, LE, Higgins, CA and Schroeder, B (2009) Balancing Paid Work and Caregiving Responsibilities: A Closer Look at Family Caregivers in Canada. Ottawa: Canadian Policy Research Networks.Google Scholar
Dwyer, JW, Lee, GR and Jankowski, TB (1994) Reciprocity, elder satisfaction, and caregiver stress and burden: the exchange of aid in the family caregiving relationship. Journal of Marriage and Family 56, 3543.CrossRefGoogle Scholar
England, P (2005) Emerging theories of care work. Annual Review of Sociology 31, 381399.CrossRefGoogle Scholar
Esping-Andersen, G (1990) The Three Worlds of Welfare Capitalism. Princeton, NJ: Princeton University Press.Google Scholar
Fast, J, Keating, N, Otfinowski, P and Derksen, L (2004) Characteristics of family/friend care networks of frail seniors. Canadian Journal on Aging/La Revue Canadienne du Vieillissement 23, 519.CrossRefGoogle ScholarPubMed
García, JR (2010) Los tiempos del cuidado: el impacto de la dependencia de los mayores en la vida cotidiana de sus cuidadores. Madrid: Imserso.Google Scholar
Glenn, EN (2000) Creating a caring society. Contemporary Sociology 29, 8494.CrossRefGoogle Scholar
Gubrium, JF (1991) The Mosaic of Care: Frail Elderly and Their Families in the Real World. New York, NY: Springer.Google Scholar
Himmelweit, S (1995) The discovery of ‘unpaid work’: the social consequences of the expansion of ‘work’. Feminist Economics 1, 119.CrossRefGoogle Scholar
Hochschild, A (1979) Emotion work, feeling rules and social structure. American Journal of Sociology 85, 551575.CrossRefGoogle Scholar
Howe, AL, Schofield, H and Herrman, H (1997) Caregiving: a common or uncommon experience? Social Science and Medicine 45, 10171029.CrossRefGoogle ScholarPubMed
Kahana, E and Young, R (1990) Clarifying the caregiving paradigm. In Biegel, D and Blum, A (eds), Aging and Caregiving: Theory, Research and Policy. Newbury Park, CA: Sage, pp. 7697.Google Scholar
Kramer, BJ (1997) Gain in the caregiving experience: where are we? What next? The Gerontologist 37, 218232.CrossRefGoogle ScholarPubMed
Kremer, M (2007) How Welfare States Care: Culture, Gender and Parenting in Europe. Amsterdam: Amsterdam University Press.CrossRefGoogle Scholar
Le Bihan, B and Mallon, I (2017) Le poids des émotions. Une réflexion sur les variations de l'intensité de l’(entr) aide familiale auprès de proches dépendants. Sociologie 8, 121138.Google Scholar
Le Bihan, B and Martin, C (2008) Caring for dependent elderly parents and family configurations. In Widmer, E (ed.), Beyond the Nuclear Family: Families in a Configurational Perspective. Bern: Peter Lang, pp. 5978.Google Scholar
Le Bihan, B, Knijn, T and Martin, C (eds) (2014) Work and Care Under Pressure: Care Arrangements Across Europe. Amsterdam: Amsterdam University Press.Google Scholar
Leira, A (1994) Concepts of caring: loving, thinking, and doing. Social Service Review 68, 185201.CrossRefGoogle Scholar
Lin, IF, Fee, HR and Wu, HS (2012) Negative and positive caregiving experiences: a closer look at the intersection of gender and relationship. Family Relations 61, 343358.CrossRefGoogle Scholar
Lincoln, YS, Lynham, SA and Guba, EG (2011) Paradigmatic controversies, contradictions, and emerging confluences, revisited. In Denzin, NK and Lincoln, YS (eds), The Sage Handbook of Qualitative Research, 4th Edn. Thousand Oaks, CA: Sage, pp. 97128.Google Scholar
López, J, López-Arrieta, J and Crespo, M (2005) Factors associated with the positive impact of caring for elderly and dependent relatives. Archives of Gerontology and Geriatrics 41, 8194.CrossRefGoogle ScholarPubMed
Marks, NF, Lambert, JD and Choi, H (2002) Transitions to caregiving, gender, and psychological well-being: a prospective US national study. Journal of Marriage and Family 64, 657667.CrossRefGoogle Scholar
Marks, NF, Lambert, JD, Jun, H and Song, J (2008) Psychosocial moderators of the effects of transitioning into filial caregiving on mental and physical health. Research on Aging 30, 358389.CrossRefGoogle ScholarPubMed
Martin, C, Le Bihan, B and Knijn, T (2014) Introduction: Workers under pressure and social care arrangements: a research framework. In Le Bihan, B, Martin, C and Knijn, T (eds), Work and Care Under Pressure: Care Arrangements Across Europe. Amsterdam: Amsterdam University Press, pp. 732.Google Scholar
Martínez, J (2007) Regímenes de bienestar en América Latina. Fundación Carolina, Madrid, Documento de Trabajo 11.Google Scholar
Montaño, S and Calderón, C (2010) El cuidado en acción: entre el derecho y el trabajo. Santiago: CEPAL.Google Scholar
Montoro, J (1999) Las consecuencias psicosociales del cuidado informal a personas mayores. Revista Internacional de Sociología 19, 729.Google Scholar
Organization for Economic Co-operation and Development (2013) A Good Life in Old Age: Monitoring and Improving Quality in Long-term Care. Paris: OECD Publishing.Google Scholar
Palacios, J (2017) The policy context of elderly care in Chile. In Elderly Care in Chile: Policies for and Experiences of Family Caregivers (Doctoral dissertation). Université de Rennes 1, Rennes, France.Google Scholar
Palloni, A and McEniry, M (2007) Aging and health status of elderly in Latin America and the Caribbean: preliminary findings. Journal of Cross-cultural Gerontology 22, 263285.CrossRefGoogle ScholarPubMed
Pinquart, M and Sörensen, S (2003) Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. Journals of Gerontology: Psychological Sciences and Social Sciences 58B, 112128.CrossRefGoogle Scholar
Provoste, S (2013) Protección social y redistribución del cuidado en América Latina y el Caribe: el ancho de las políticas. In Calderón, C (ed.), Redistribuir el cuidado: el desafío de las políticas. Santiago: CEPAL, pp. 127166.Google Scholar
Raveis, VH, Karus, D and Pretter, S (2000) Correlates of anxiety among adult daughter caregivers to a parent with cancer. Journal of Psychosocial Oncology 17, 126.CrossRefGoogle Scholar
Servicio Nacional del Adulto Mayor (SENAMA) (2009) Dependencia en las personas mayores. Santiago: SENAMA.Google Scholar
Soullier, N (2012) Aider un proche âgé à domicile: la charge ressentie. Études et résultats 799, 18. https://drees.solidarites-sante.gouv.fr/IMG/pdf/er799.pdfGoogle Scholar
Stephens, MAP, Franks, MM and Atienza, AA (1997) Where two roles intersect: spillover between parent care and employment. Psychology and Aging 12, 3037.CrossRefGoogle ScholarPubMed
Twigg, J (2000) Bathing: The Body and Social Care. London: Routledge.Google Scholar
Ungerson, C (2005) Care, work and feeling. Sociological Review 53, 188203.CrossRefGoogle Scholar
Van Manen, M (1990) Beyond assumptions: shifting the limits of action research. Theory into Practice 29, 152157.CrossRefGoogle Scholar
Van Manen, M (2002) Care-as-worry, or ‘don't worry, be happy’. Qualitative Health Research 12, 262278.CrossRefGoogle ScholarPubMed
Werner, P, Goldstein, D and Buchbinder, E (2010) Subjective experience of family stigma as reported by children of Alzheimer's disease patients. Qualitative Health Research 20, 159169.CrossRefGoogle ScholarPubMed