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.
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 email@example.com or (312) 741-1286.
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.
Community Engaged Research Project: Examining Knowledge, Attitudes and Behaviors around Hospice and Palliative Care Among Black Individuals Living in Chicago
- A Collaborative Project between The HAP Foundation and NORC at University of Chicago
- Executive Summary: Coming in April 2023
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.
Recent Articles Authored in Partnership with HAP Team Members:
Availability of bereavement support following traumatic pediatric death in a large metropolitan area
Divakar, K. James, A. Mayorga, K.N. Michelson. DEATH STUDIES. DOI: 10.1080/07481187.2023.2170492 (2023).
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).