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Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program

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Abstract

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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Acknowledgments

This work was supported by the National Institute on Aging (R03AG040690), the Jahnigen Award generously sponsored by the American Geriatrics Society, the Hartford Foundation, the American Congress of Obstetricians and Gynecologists, and the Buehler Center on Aging, Health and Society, with further funding from the Robert H. Lurie Comprehensive Cancer Center. We are grateful to the study participants and research assistants who contributed to this study. We also thank Access DuPage for partnering with us on this study and for trusting us in sharing their excellent relationship with their community members. We want to extend a special thank you to Dr. Thomas Cornwell, founder and medical director of HomeCare Physicians, who was an instrumental part of our success in connecting with and engaging the community of caregivers in DuPage County.

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Correspondence to Melissa A. Simon.

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Phillips, S.S., Ragas, D.M., Tom, L.S. et al. Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program. J Community Health 41, 550–556 (2016). https://doi.org/10.1007/s10900-015-0129-7

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  • DOI: https://doi.org/10.1007/s10900-015-0129-7

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