The PI, Melissa A. Simon, MD MPH is an Obstetrician/Gynecologist committed to becoming an independently-funded, community-engaged researcher seeking to extend critical, innovative approaches to building health care safety-nets for older, low income seniors and their family caregivers. This R03 GEMSSTAR application proposes to build on Dr. Simon's experience with patient navigation interventions and health disparities research and her team of collaborators'long standing expertise in geriatrics, palliative care, and health economics. With funding from NIH parent cancer patient navigator grants, this research team has recently begun a community-based participatory research program (CBPR) to extend patient navigation to the rapidly growing population of low income, medically underserved women in the suburbs with cancer. Leveraging this population as a starting point, Dr. Simon proposes to gather empirical evidence among low income seniors and their family caregivers to support proposed solutions to stem illness-related poverty. This proposal aims to build the economic and business cases for supporting such solutions among low income families caregiving for their elders in the Chicagoland area. Disease can be a primary obstacle in combating poverty, as described by the World Health Organization, and serious illness can cause economic devastation for families, as the burden of caregiving falls on patients'family members most of whom are women. Scholars have described an """"""""illness-poverty trap"""""""" in which illness causes poverty and poverty causes illness in a cycle that cannot easily be broken for generations. Economic devastation from illness (such as inability to pay for medical care) can cause families to fall into entrenched poverty, which in turn, predisposes them to further health problems. In this way, the economic devastation becomes a public health concern as well as a matter of preventive health and of individuals'health care. One potential model is to link health services with solutions to stem illness related poverty such as capitalizing on skills obtained while providing informal caregiving. Informal caregivers, who are often given considerable training by hospices and home care agencies in order to properly care for their family-member, could find a road back to employment through additional training and certification in caregiving. That way, caregivers could gain future employment after having been forced to truncate their education or quit their jobs on account of their family member's illness.
Our aims i nclude to systematically explore: informal/family caregivers financial and social experiences;whether creating a healthcare employment option based on training and certification of informal caregiving in palliative care would be a welcomed option by many informal caregivers who face the challenges of terminal illness in their families;and to examine how to accomplish such an large scale add-on intervention.

Public Health Relevance

Given the demonstrated importance of informal caregivers to older adults and to society, and the personal costs that may accompany the role, the results of the proposed study have important public health implications. These findings will help create feasible solutions in the US to help mitigate illness-related poverty among low income families that face significant economic impact of severe chronic or terminal illness on their household that is often multigenerational. The greater burden of health disparities among underserved communities and families who provide care to their seriously ill seniors is growing and coupled with the increase in the aging population, of whom a majority will require caregiving, underscores the important need for this line of innovative research.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Small Research Grants (R03)
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Special Emphasis Panel (ZAG1-ZIJ-9 (M1))
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Spotts, Erica L
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Northwestern University at Chicago
Obstetrics & Gynecology
Schools of Medicine
United States
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Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia et al. (2016) Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options. J Am Geriatr Soc 64:174-80
Phillips, Sara S; Ragas, Daiva M; Tom, Laura S et al. (2016) Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program. J Community Health 41:550-6
Simon, Melissa A; Gunia, Brian; Martin, Emily J et al. (2013) Path toward economic resilience for family caregivers: mitigating household deprivation and the health care talent shortage at the same time. Gerontologist 53:861-73