The Labor of Caregiving: A Theoretical Model of Caregiving During Potentially Fatal Illness
Abstract
The purpose of this study was to explore the influence that chronic and potentially fatal illness has on the caregiving process over time. Data were collected through in-depth interviews with 26 family caregivers of people experiencing AIDS or advanced cancer over a 4-month period. Constant comparative analysis was used to analyze the data. A substantive theory of family caregiving for people with life-threatening illnesses was developed around a core organizing theme: the labor of caregiving. Four phases emerged: becoming a caregiver, taking care, midwifing the death, and taking the next step. This study validates the taking-care or “tasks” aspect of caregiving, revealing that issues and tasks vary in each phase of caregiving. The key role of the caregiver in contributing to the quality of life of the ill person was apparent in the initial phase of an illness as well as at the time of death.
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This neglect has been studied by many researchers.
“This neglect has been studied by many researchers [42–44].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [42]
Suboptimal interaction with informal caregivers may lead to caregiver distress and less competency in dealing with uncertainty and problem solving, thus potentially adversely impacting on the patient.
“Suboptimal interaction with informal caregivers may lead to caregiver distress and less competency in dealing with uncertainty and problem solving [42], thus potentially adversely impacting on the patient.”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [42]
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The problem of rigor in qualitative research
Sandelowski, M. (1986) · Advances in Nursing Science · doi:10.1097/00012272-198604000-00005 · Cited by 2,772 · cited 1× · see citing works
“Procedures for monitoring the validity, reliability, and credibility of the data were established and remained central during data collection and analysis (Sandelowski, 1986).”
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Review of the literature on the effects of caring for a patient with cancer
Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010) · Psycho-Oncology · doi:10.1002/pon.1670 · Cited by 786 · see citing works
Lund, L., Ross, L., Petersen, M. A., & Groenvold, M. (2015) · Supportive Care in Cancer · doi:10.1007/s00520-014-2529-0 · Cited by 89 · see citing works
Chong, E., Crowe, L., Mentor, K., Pandanaboyana, S., & Sharp, L. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-022-07468-7 · Cited by 86 · see citing works
“Subop-timal interaction with informal caregivers may lead to caregiver distress and less competency in dealing with uncertainty and problem solving [42], thus potentially adversely impacting on the patient.”
Ussher, J. M., Perz, J., Hawkins, Y., & Brack, M. (2009) · Health Psychology Review · doi:10.1080/17437190903033401 · Cited by 50 · see citing works
- Authors
- Brown, M.-A., & Stetz, K.
- Affiliations
- University of Washington (US)
- Seattle Pacific University (US)
- Venue
- Qualitative Health Research
- Publisher
- SAGE Publications
- Published
- 1999-03
- Volume
- 9
- Issue
- 2
- Pages
- 182-197
- ISSN
- 1049-7323 (ISSN-L)
- 1552-7557
- OpenAlex
- W2100130773
- Cited by
- 109
- References
- 1
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 2 · 2023: 2 · 2022: 1 · 2021: 1 · 2020: 1 · 2019: 5 · 2018: 3 · 2017: 2 · 2016: 3 · 2014: 4 · 2013: 4 · 2012: 6
- FWCI
- 15.22
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Qualitative Health Research (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Keywords
- family caregiving, AIDS, advanced cancer, end-of-life care, quality of life, family caregivers
- MeSH terms
- Acquired Immunodeficiency Syndrome, Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Attitude to Death, Chronic Disease, Data Collection, Female, Home Nursing, Humans, Male, Middle Aged, Models, Theoretical, Neoplasms, Stress, Psychological, Caregivers, Cost of Illness
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