Family caregiving is attracting more attention from policy makers and service providers, but managing a chronic condition in the home is a very complex activity that usually remains invisible to health care professionals. The study’s purpose was to identify strategies family caregivers used in the home to care for their relatives who have dementia. The author collected data from interviews with 18 caregivers and 2 health care professionals, and from participant observation in caregivers’ support groups and homes. She used constant comparison analysis and describes the Craft of Care, a category that emerged during qualitative analysis. Caregivers craft care by creating ruses in care, a language to communicate, and spaces and devices for caregiving. They sustain the humanity of the patient in the midst of a condition that tends to destroy it.
Abel, E. K. (1990). Daughters caring for elderly parents. In J. F. Gubrium & A. Sanker (Eds.), The home care experience (pp. 189-206). Newbury Park, CA: Sage.
2.
Åberg, A. C., Sidenvall, B., Hepworth, M., O’Reilly, K., & Lithell, H. (2004). Continuity of the self in later life: Perceptions of informal caregivers. Qualitative Health Research, 14, 792-815.
3.
Albert, S. M. (1990). The dependent elderly, home health care, and strategies of household adaptation. In J. F. Gubrium & A. Sanker (Eds.), The homecare experience (pp. 19-36). Newbury Park, CA: Sage.
4.
Alfonso Fraga, J. C., & Mena Correa, M. (1999). Envejecimiento: Un reto adicional—Apuntes para su estudio en América Latina [Old age: An additional challenge—Notes for a study in Latin America]. In M. N. Bronfman & R. Castro (Eds.), Salud, cambio social y política: Perspectivas desde América Latina (pp. 441-464). México DF, México: EDAMEX.
5.
Álvarez L. P. (1997). Características de los cuidadores y del cuidado de niños con parálisis cerebral [Characteristics of caregivers and care of children with cerebral palsy]. In ACOFAEN (Ed.), XIII Coloquio Nacional de Investigación en Enfermería (p. 8). Medellín, Colombia: Universidad de Antioquia, Facultad de Enfermería, ACOFAEN.
6.
Bayley, H. (1999). Elegía a Iris [Elegy to Iris] (F. Borrajo, Trans.). Madrid, Spain: Alianza.
7.
Bloch, R. (1985). La adivinación en la antigüedad [Divination in ancient times]. México DF, México: Fondo de Cultura Económica.
8.
Blumer, H. (1969). Symbolic interactionism. Englewood Cliffs, NJ: Prentice Hall.
9.
Bond, J., Farrow, G., Gregson, B. A., Bamford, C., Buck, D., McNamee, P., et al. (1990). Informal caregiving for frail older people at home and in long-term care institutions: Who are the key supporters?Health and Social Care in the Community, 7(6), 434-444.
10.
Boss, P. (2001). La pérdida ambigua [The ambiguous loss]. Barcelona, Spain: Gedisa.
11.
Bowes, A., & Wilkinson, H. (2003). “We didn’t know it would get that bad”: South Asian experiences of dementia and the services responses. Health and Social Care in the Community, 11(5), 387-396.
12.
Briggs, R. (1998). Caregivers daughters: Accepting the role of caregiver for elderly parents. New York: Garland.
13.
Brody, E. M. (1990). Women in the middle. New York: Springer.
14.
Butcher, H. K., Holkup, P. A., & Buckwalter, K. C. (2001). The experience of caring for a family member with Alzheimer’s disease. Western Journal of Nursing Research, 23(1), 33-55.
15.
Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 509-536) Thousand Oaks, CA: Sage.
16.
Clarke, C. L. (1999). Family caregiving for people with dementia: Some implications for policy and professional practice. Journal of Advanced Nursing, 29(3), 712-720.
17.
Collins, C., Liken, M., King, S., & Kokinakis, C. (1993). Loss and grief among family caregivers of relatives with dementia. Qualitative Health Research, 3, 236-253.
18.
Conde Sala, J. L. (1998). Integración de la familia en el proceso terapéutico de la demencia [The integration of the family in the therapeutic process of dementia]. In R. Alberca & S. López-Pousa (Eds.), Enfermedad de Alzheimer y otras demencias (pp. 125-136). Madrid, Spain: Panamericana.
19.
Cozad Lyon, J., DiMartile, B., & Nies, M. A. (1997). The home visit and the home health care. In J. M. Swanson& M. A. Nies (Eds.), Community health nursing (pp. 797-821). Philadelphia: W. B. Saunders.
20.
de la Cuesta, C. (2001a). Familia y cuidados a pacientes crónicos [Family and care to patients with chronic conditions]. Index de Enfermería, 10, 20-26.
21.
de la Cuesta, C. (2001b). Private troubles, public issues: The case of family care [Editorial]. Primary Health Care Research and Development, 2, 203-204.
22.
de la Cuesta, C. (2001c). Review of the Latin American literature on research in family care of patients with dementia. Unpublished report, Universidad de Antioquia, Facultad de Enfermería, Medellín, Colombia.
23.
de la Cuesta, C. (2004). Cuidado artesanal: La invención ante la adversidad [The craft of care: Inventiveness in adversity]. Medellín, Colombia: Universidad de Antioquia.
24.
de la Cuesta, C., & Sandelowski, M. (in press). Tenerlos en la casa: The material world and craft of family caregiving for relatives with dementia. Journal of Transcultural Nursing.
25.
Detienne, M., & Vernant, J. P. (1988). Las artimañas de la inteligencia [The ruses of the intelligent]. Madrid, Spain: Taurus.
26.
Elias, N. (1998). La civilización de los padres y otros ensayos [The civilization of parents and other essays]. Bogotá, Colombia: Norma.
27.
Ericson, I., Hellström, Lundh, U., & Nolan, M. (2001). What constitutes care for people with dementia? Comparing the views of family and professional caregivers. Texto & Contexto Enfermagem, 10(2), 128-139.
28.
Estrada Herrero, D. (1988). Estética [Aesthetics]. Barcelona: Herder.
29.
Francisco del Rey, C., & Mazarrasa, A. (1995). Cuidados informales [Informal care]. Revista Rol de Enfermería, 18(202), 61-65.
30.
Frank, A. (2003). Survivorship as craft and conviction: Reflections on research in progress. Qualitative Health Research, 13, 247-255.
31.
Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine.
32.
Gubrium, J. F. (1987). Structuring and destructuring the course of illness: The Alzheimer’s disease experience. Sociology of Health and Illness, 9(1), 1-24.
33.
Gubrium, J. F. (1991). Mosaic of care: Frail elderly and their families in the real world. New York: Springer.
34.
Hamilton, H. E. (1994). Conversations with an Alzheimer’s patient: An interactional sociolinguistic study. Cambridge, UK: Cambridge University Press.
35.
Handy, S. L., Boarnet, M. G., Ewing, R., & Killingsworth, R. E. (2002). How the built environment affects physical activity: Views from urban planning. American Journal of Preventive Medicine, 23, 64-73.
36.
James, V. (1998). Unwaged carers and the provision of health care. In D. Field & S. Taylor (Eds.), Sociological perspectives on health, illness and health care (pp. 211-229). London: Blackwell Science.
37.
Jansson, W., Nordberg, G., & Grafström, M. (2001). Patterns of elderly spousal caregiving in dementia care: An observational study. Journal of Advanced Nursing, 34(6), 804-812.
38.
Jewson, N. (1993). Family, community and health. In S. Taylor & D. Field (Eds.), Sociology of health and health care (pp. 173-188). London: Blackwell Science.
39.
Klaassen, P. G., Quiroga López, P., Zavala, G. M., Castro Salas, M., Pérez, C. H. & Vidal, D. (1996). Redes de Apoyo médicosocial para pacientes con demencia: Comunas de Concepción y Quillán [Networks of medical and social support for patients with dementia: Neighbors of Concepción and Quillán]. Cuadernos Médico Sociales (Santiago de Chile), 39(3/4), 111-115.
40.
Kvale, S. (1996). InterViews: An introduction to qualitative research interviewing. Thousand Oaks, CA: Sage.
41.
Mace, N. L., & Rabins, P. V. (1997). Cuando el día tiene 36 horas [The 36-hour day] (2nd ed.). México DF, México: Pax.
42.
Manthorpe, J., Iliffe, S., & Eden A. (2003). Testing Twigg and Atkin’s typology of caring: A study of primary care professionals’ perceptions of dementia care using a modified focus group method. Health and Social Care in the Community, 11, 477-485.
43.
Marks, D. F., & Sykes, M. (2000). Dealing with dementia: Recent European research. London: Middlesex University Press.
44.
Mayan, M. J. (2001). An introduction to qualitative methods: A training module for students and professionals. Edmonton, Canada: International Institute for Qualitative Methodology Press.
45.
McGarry, J., & Arthur, A. (2001). Informal caring in late life: A qualitative study of the experiences of older carers. Journal of Advanced Nursing, 33(2), 182-189.
46.
Mead, H. (1972). Espíritu, persona y sociedad [Mind, self and society]. Buenos Aires: Piados. (Original work published 1934)
47.
Morgan, D. G., & Laing, G. P. (1991). The diagnosis of Alzheimer’s disease: Spouse’s perspectives. Qualitative Health Research, 1, 370-387.
48.
Morse, J. M. (2001). Using shadowed data [Editorial]. Qualitative Health Research, 11, 291-292.
49.
Morse, J. M., & Field, P. A. (1995). Qualitative research methods for health professionals (2nd ed.). Thousand Oaks, CA: Sage.
50.
Morse, J. M., & Richards, L. (2002). ReadMe first, for a user’s guide to qualitative methods. Thousand Oaks, CA: Sage.
51.
Muñoz González, L. A., Arancibia Silva, P., & Paredes Arévalo, L. P. (1999). La experiencia de familiares cuidadores de pacientes que sufren Alzheimer y competencias del profesional de enfermería [The experience of family caregivers of patients with Alzheimer and professional nursing competence]. Investigación y Educación en Enfermería, 17(2), 35-50.
52.
National Institute of Nursing Research. (2001). Research in informal caregiving, executive summary. Retrieved September 1, 2004, from http://www.nih.gov/ninr/vol13/FamCare.html
53.
National Institutes of Health. (1999). Family caregiving. Retrieved March 11, 1999, from http://www.nih.gov/ninr/vol13/FamCare.html
54.
Nettleton, S. (1995). The sociology of health and illness. Cambridge, UK: Polity.
55.
Nolan, M., Grant, G., & Keady, J. (1999). Supporting family carers: A facilitative model for community nursing practice. In J. McIntosh (Ed.), Research issues in community nursing (pp. 177-201). Houndmills, UK: Macmillan.
56.
Opie, A. (1994). The instability of the caring body: Gender and caregivers of confused old people. Qualitative Health Research, 4, 3150.
57.
Ory, M. G., Yee, J. L., Tennstedt, S. L., & Schulz, R. (2000). The extent and impact of dementia care: Unique challenges by family caregivers. In R. Schulz (Ed.), Handbook of dementia caregiving: Evidence-based interventions (pp. 1-31). New York: Springer.
58.
Reed-Danahay, D. (2001). This is your home now! Conceptualizing location in a dementia unit. Qualitative Research, 1(1), 47-63.
59.
Rhodes, P., & Shaw, S. (1999). Informal care and terminal illness. Health and Social Care in the Community, 7(1), 39-50.
60.
Ross, M. M., Carswekk, A., & Dalziel, W. B. (2001). Family caregiving in long-term care facilities. Clinical Nursing Research, 10(4), 347-363.
61.
Rundqvist, E. M. (1999). Caring relationships with patients suffering from dementia: An interview study. Journal of Advanced Nursing, 29(4), 800-807.
62.
Rutman, D. (1996). Caregiving as women’s work: Women’s experiences of powerfulness and powerlessness as caregivers. Qualitative Health Research, 6, 90-111.
63.
Ryan, T., Nolan, M., Enderby, P., & Reid, D. (2004). “Part of the family”: Sources of job satisfaction amongst a group of community-based dementia care workers. Health and Social Care in the Community, 12(2), 111-118.
64.
Sacks, O. (1998). Con una sola pierna [A leg to stand on] (José Manuel Alvarez Flórez, Trans.). Barcelona: Anagrama. (Original work published 1984)
65.
Sacks, O. (2002a). Un antropólogo en Marte [An anthropologist on Mars] (D. Alou, Trans.). Barcelona: Anagrama. (Original work published 1995)
66.
Sacks, O. (2002b). El hombre que confundió a su mujer con un sombrero [The man who mistook his wife for a hat] (Rev. F. Sabans Magri). Barcelona: Anagrama. (Original work published 1985)
67.
Sandelowski, M. (2000). Devices and desires: Gender, technology and American nursing. Chapel Hill: University of North Carolina Press.
68.
Schatzman, L., & Strauss, A. (1973). Field research: Strategies for natural sociology. Englewood Cliffs, NJ: Prentice Hall.
69.
Schwartz, H., & Jacobs, J. (1979). Qualitative sociology, a method to the madness. New York: Free Press.
70.
Schneider, J., Murray, J., Banerjee, S., & Mann, A. (1999). EUROCARE: A cross national study of coresident spouse carers for people with Alzheimer’s disease: I Factors associated with care burden. International Journal of Geriatric Psychology, 14(8), 651-661.
71.
Schumacher, K. L., Stewart, B. J., Archbold, P. G., Dodd, M. J., & Dibble, S. (2000). Family caregiving skill: Development of the concept. Research in Nursing and Health, 23, 191-203.
72.
Strauss, A. (1987). Qualitative analysis for social scientists. Cambridge, UK: Cambridge University Press.
73.
Strauss, A., & Corbin, J. M. (1998). Basics of qualitative research. Thousand Oaks, CA: Sage.
74.
Strauss, A., Corbin, J. M., Fagerhaugh, H., Glaser, B., Maines, D., Suczeck, B., et al. (1984). Chronic illness and the quality of life. St. Louis, MO: C. V. Mosby.
75.
TeleAntioquia Noticias (Producer). (2002, September 25). Noticia cultural [Television broadcast]. Medelín, Colombia: Author.
76.
Turner B. (1992). Regulating bodies: Essays in medical sociology. London: Routledge.
77.
Van den Brink, Y. (2003). Diversity in care values and expressions among Turkish family caregivers and Dutch community nurses in the Netherlands. Journal of Transcultural Nursing, 14(2), 146-154.
78.
Wackerbarth, S. (1999). Modeling a dynamic decision process: Supporting the decisions of caregivers of family members with dementia. Qualitative Health Research, 9, 294-314.
79.
Wolf, M. (1988). Sociologas de la vida cotidiana [Sociologies of everyday life] (2nd ed.). Madrid, Spain: Cátedra.
