Managing research challenges in hospice

A toolbox for doing research in hospice and palliative care
A toolbox for intervention research tailored to hospice and palliative care

Managing research challenges in hospice is an ongoing effort. Research teams from the Hospice Caregiving Research Network and the Lab for Caregiving Innovation are currently involved in two hospice behavioral intervention research clinical trials, both of which have had significant challenges. This month’s blog will share ways we have managed research challenges in hospice as we implemented two trials. 

Accessing cancer caregivers for educational and social support in shared decision making (ACCESS)

The ACCESS study is sponsored by the National Cancer Institute. It is a five-year pragmatic cluster crossover clinical trial taking place in hospices across Missouri. Our goal is to lower anxiety for caregivers of cancer patients by providing education and social support in online groups. We are also using technology to empower caregivers to participate in their hospice team meetings. This study is in its fourth year and has enrolled nearly 300 caregivers in seven different hospice agencies. We recently published the challenges experienced in this study as well as ways to manage research challenges in hospice.

Challenges doing behavioral intervention research in hospice
Parker Oliver, D., Washington, K., Demiris, G., & White, P. Challenges in Implementing Hospice Clinical Trials: Preserving Scientific Integrity While Facing Changing Environments. Journal of Pain and Symptom Management, 59(2), 365-371. Doi: 10.1016/j.jpainsymman.2019.09.028

Problem-solving intervention to support caregivers in end of life care settings (PISCES)

The PISCES study is sponsored by the National Institute of Nursing Research. It is a five-year randomized clinical trial taking place in hospices in Philadelphia. PISCES uses web-based technology to teach caregivers how to improve problem-solving skills to improve the caregiving experience and lower anxiety. It uses in-person and online visits to help caregivers systematically address selected problems and identify positive aspects of the caregiving experience. 

Challenges of research in the hospice

Clinical trials in the hospice setting are rare. There are many unique challenges in this setting. Barriers to research include:

  • Enrollment in hospice is only 69 days on average, so interventions must be brief.
  • The frail physical condition and cognitive impairment of many patients when they enroll in hospice make informed consent challenging.
  • The majority of hospice care is delivered in homes that are scattered across many miles in rural communities. This increases the research costs due to time and travel.
  • Hospice caregivers experience tremendous burden during the final days and must easily understand and see benefit in participation. This makes recruitment extremely challenging.
  • Each hospice agency has its own culture and process for referral into research. It is challenging to accommodate so many unique processes while maintaining the integrity of the science.
  • Rural hospice agencies have smaller patient populations. This requires an extended amount of time to obtain significant sample sizes for a powered study.
  • Hospice agencies, especially in rural areas, do not have a diverse population, which impedes generalization of results.
  • Hospice staff are protective of their frail patients. This often makes them gatekeepers that hesitate to allow researchers an opportunity to present research studies to patients and families.
  • The fast-paced organizational changes occurring in hospice often are a challenge for the slow pace of funding. Proposals, reviews, and funding decisions take years.

Handling research challenges in hospice

Managing the research challenges in hospice is an ongoing effort. These are a few strategies we have found helpful.

  • Integrate research staff as much as possible into hospice agencies so they become a trusted part of the hospice team.
  • Develop interventions that use technology. Be sensitive to the sometimes-limited access and knowledge of some populations due to geographic location, age, or income.
  • Constantly monitor the key statistics reflecting success not of your outcomes but of your study. For example, recruitment, attrition, referrals, etc.
  • Create fidelity checks to monitor appropriate implementation of your intervention.
  • Use broad inclusion criteria to assure you meet your recruitment targets and have appropriate power.
  • Build large attrition into your power analysis.
  • Use stakeholders to assist in the assessment of benefits verses burdens in your study. Perceived benefits over burdens will influence recruitment.
  • Develop close and trusting relationships with hospice agency administrators, admissions staff, and field staff.
  • Communicate regularly with the hospice agency.
  • Build a website where participants can get additional information. See the Lab for Caregiving Innovation’s example.

About the author

Family and Community Medicine Research Group
  • Dr. Debra Parker Oliver is a founding faculty member of the Lab for Caregiving Innovation and the Hospice Caregiving Research Network. She has been principal investigator on three hospice clinical trials and co-investigator on another three. Herself a former hospice caregiver, she is committed to improving the caregiving experience for those who care for their dying loved ones. 

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