Research

The HAP Foundation is committed to making meaningful contributions to the field of serious illness research through robust evaluation of HAP’s internal programming, as well as multi-institutional collaborative research. HAP is an independent 501(c)(3) organization that is not affiliated with a particular hospital, university or medical center. We greatly appreciate opportunities to partner with regional and national academic medical centers and individual leaders in research on serious illness.

We are committed to strengthening evidence-based research around serious illness to improve care, support advocacy efforts and increase access to care for all people. We seek to contribute to the body of literature that creates change, with a focus on advocacy, workforce development, education and access.

Multiracial students using laptop computer for project research while studying together at school - Focus on african boy face

HAP’s research interests include:

  • The examination and evaluation of disparities in historically marginalized communities with the goal of increasing access to care for serious illness care and grief services
  • The contribution of community health workers (CHW), particularly HAP’s CHWs who are trained in serious illness care and grief support, in increasing knowledge and connectivity in the regions where they live and work
  • Grief as a social determinant of health, specifically as it intersects with more traditionally-recognized and well-established social determinants of health
  • The impact of navigation assistance for grief support following traumatic loss
  • Pediatric palliative care, particularly systems to improve continuity of care and expand location of care choices for families
Diverse group of young designers discussing a project together while sitting around a boardroom table in an office

Our goal is to produce research that can empower families and providers with tools to improve the care continuum for children with serious illness. Whenever possible, we believe in using a community-based, participatory research approach for projects that respects and honors the opinions, needs, culture and values of the individuals involved in the research. This approach ensures members of the community involved in research are contributors to all aspects of the research project from developing the research question to dissemination of the research results.

Research Team

Kim Downing, RN, BSN, JD, Executive Director of Program Evaluation and Research

Contact Us

For questions about our research priorities or to inquire about research collaboration, please reach out to Kim Downing RN, BSN, JD, Executive Director of Program Evaluation and Research at kdowning@thehapfoundation.org or (312) 741-1286.

Current Projects

The HAP Foundation is currently working on a research project in partnership with NORC at the University of Chicago. We are assessing perceptions around serious illness care in Black communities in Chicago, with the hope of using the information to increase access to serious illness and grief support in these communities.

HAP is working in partnership with Dr. Kelly Michelson from Ann & Robert H. Lurie Children’s Hospital of Chicago to evaluate the use and impact of a grief navigation system following child loss, a program of the Missing Pieces initiative.

We are also involved with multiple partners in an evaluation of our community health worker programming, which includes targeted education on serious illness, palliative care, hospice and grief services. We seek to understand the knowledge, attitude and beliefs of our CHWs on these issues prior to and after our education programming, as well as the impact on those in the community who ultimately receive education on these topics.

Group of doctors in meeting with consultant

Recent Articles Authored in Partnership with HAP Team Members:

Challenges and Opportunities of Providing Pediatric Funeral Services: A National Survey of Funeral Professionals
K.James, B.Hawley, C. McCoy, L. Lindley. AM J HOSP PALLIAT CARE, 39(3): 289-294 (2022).

Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
P. Murday, K. Downing, E. Gaab, J. Misasi, K. Michelson. AM J HOSP PALLIAT CARE, 39(1): 18-26 (2022).

Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.
K. Johnson, A. Morvant, K. James, L. Lindley. PEDIATRICS, 148 (5):e2021049968 (2021).

 

Recent Articles we Appreciated Reading:

Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia
Lin, P. et al. JAMA NETW OPEN, 5(6):e2216260 (2022).

Community Health Workers At The Dawn Of A New Era
Zulu, J., Perry H. HEALTH RES POLICY AND SYS,19 (Suppl 3): 130 (2021).

Grief: A Brief History of Research on How Body, Mind, and Brain Adapt
O’Connor, M. PSYCHOSOM MED., 81(8): 731-738 (2019).

Cross-Cultural Conceptualization Of A Good End Of Life With Dementia: A Qualitative Study
Nishimura, M., Dening, K.H., Sampson, E.L. et al. BMC PALLIAT CARE, 21, 106 (2022).