Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program
Open accessAbstract
Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.
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Studies reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making, and lower anxiety and depressive symptoms.
“Whilst studies examining resiliency and preparedness of informal caregivers of advanced cancer patients reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making and lower anxiety and depressive symptoms [3, 8, 9]”
From Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study (2023) · cites this paper as [9]
The Introduction discusses economic resilience through caregiver training, while Methods > Analysis describes an examination of recommendations for that program; neither reports an association between resilience and preparedness, surrogate decision-making readiness, anxiety, or depressive symptoms. Searches for those associations and for advanced cancer caregivers found no relevant passage in our copy. Page numbers were not provided. (LLM, conf=0.78)
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Research works printed but not linked: 13
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- [2]Hickey M 1990 What are the needs of families of critically ill patients? A review of the literature since 1976 Heart & Lung 19 4 401 415 2196246
- [3]Coleman EA 2003 Falling through the cracks: Challenges and opportunities for improving transitional care for persons with continuous complex care needs Journal of the American Geriatrics Society 51 549 555 12657078
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- [6]Joo H Dunet DO Fang J Wang G 2014 Cost of informal caregiving associated with stroke among the elderly in the United States Neurology 2014 83 20 1831 7 10.1212/WNL.0000000000000986 Epub 2014 PMC4365923 25305152 · DOI
- [7]Joo H Fang H Losby JL Wang G 2015 Cost of Informal Caregiving for Patients with Heart Failure Am Heart J 2015 169 1 142 48.e2 10.1016/j.ahj.2014.10.010 Epub 2014 PMC4392718 25497259 · DOI
- [8]Angioli R Capriglione S Aloisi A 2015 Economic Impact Among Family Caregivers of Patients with Advanced Ovarian Cancer Int J Gynecol Cancer 2015 Epub ahead of print 26270119
- [9]Simon MA Gunia B Martin EJ 2013 Path toward economic resilience for family caregivers: mitigating household deprivation and the health care talent shortage at the same time Gerontologist 53 861 873 23633216 PMC3771674
- [10]Phillips S Ragas DM Hajjar N Tom LS XinQi D Simon MA 2015 Leveraging the experiences of informal caregivers to create future healthcare workforce options Journal of American Geriatrics Society Accepted, Forthcoming 2015 PMC4721256 26782869
- [13]Emanuel EJ Emanuel LL 1998 The promise of a good death Lancet 351 Suppl 2 SII21 29 9606363
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Too, W., Lelei, F., Adam, M., & Halestrap, P. (2023) · BMC Palliative Care · doi:10.1186/s12904-022-01048-6 · Cited by 22 · see citing works
“Whilst studies examining resiliency and preparedness of informal caregivers of advanced cancer patients reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making and lower anxiety and depressive symptoms [3, 8, 9], there is less insight into Kenyan experie…”
Background
- Authors
- Phillips, S. S., Ragas, D. M., Tom, L. S., Hajjar, N., Dong, X., & Simon, M. A.
- Affiliations
- Northwestern University (US)
- Rush University Medical Center (US)
- Corresponding author
- Simon, Melissa A.
- Venue
- Journal of Community Health
- Published
- 2015-11-25
- Volume
- 41
- Issue
- 3
- Pages
- 550-556
- ISSN
- 0094-5145 (ISSN-L)
- 1573-3610
- PMC
- PMC4844754
- OpenAlex
- W2173792139
- Cited by
- 8
- References
- 0
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 1 · 2021: 1 · 2020: 1 · 2019: 1 · 2018: 1 · 2017: 1
- FWCI
- 1.68
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Community Health (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (R03AG040690)
- American Geriatrics Society (Jahnigen Award)
- John A. Hartford Foundation
- American Congress of Obstetricians and Gynecologists
- Buehler Center on Aging, Health and Society
- Robert H. Lurie Comprehensive Cancer Center
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- informal caregivers, caregiver training programs, return to work, economic burden of illness, chronic disease, terminal illness, community stakeholders, training program design, instructional practices
- MeSH terms
- Stakeholder Participation, Aged, Costs and Cost Analysis, Education, Nonprofessional, Employment, Family, Female, Humans, Interviews as Topic, Male, Middle Aged, Pilot Projects, Caregivers, Home Health Aides
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