Determining Readiness to Engage in End of Life/Palliative Care Conversations with Adolescents and Young Adults Living with Advanced Cancer

Determining Readiness to Engage in End of Life/Palliative Care Conversations with Adolescents and Young Adults Living with Advanced Cancer

Cynthia Bell

Assistant Professor

Contact

cjbell@wayne.edu
313-577-5722
313-577-4188 (fax)

Determining Readiness to Engage in End of Life/Palliative Care Conversations with Adolescents and Young Adults Living with Advanced Cancer

My research focuses on psychosocial support for adolescents and young adults (AYA) living with advanced cancer. I am a strong advocate for providing opportunities for AYAs to have an active voice in patient, provider, and family discussions surrounding care and treatment. I am passionately committed to helping AYAs live well while processing their hopes and dreams for the future and simultaneously processing their uncertainties and fear.

Program of Research

My program of research focuses on the psychosocial issues of adolescents and young adults (AYA) living with advanced cancer and how to engage AYAs in end of life/palliative care (EOLPC) conversations within clinical settings. In preliminary studies, I have created an AYA Readiness Model (with three domains: awareness, acceptance, and willingness) and a Measure for engaging in EOLPC conversations. Our Measure includes preferences for EOLPC discussions with family/health care providers, contingency planning, and decision-making preferences if disease progresses.

We are actively recruiting adolescents and young adults to participate in cognitive interviews and validity testing. Readiness Research has been supported by the Oncology Nursing Society Foundation, Elizabeth and Peter Schotanus Endowment in partnership with Children’s Hospital of Michigan, and donations to the Hospice of Michigan Institute.

Watch Cynthia Bell discuss her presentation, "Moving Science Forward With the Stories Patients Tell," at the 2016 ONS Congress in San Antonio.

Current Research

Funded Research

• April 2014- October 2015 Adding Essential Instrumentation Skills for Use with Adolescents Living with Advanced Cancer (PI: Bell) Career Development Award, ONS Foundation through unrestricted Grant from Genentech, Inc., Mentor: Pamela Hinds, PhD, RN, FAAN, Children’s National Health System, Washington D.C.
Evaluating Feasibility of Recruitment and Online Data Collection in Adolescents and Young Adults with Cancer (PI: Bell) University Research Grant

Research Studies

Describing Pediatric Early Care Patients – A Palliative Care Approach (PI: Bell)- Hospice of Michigan
Evaluating Feasibility of Social Media Recruitment and Online Data Collection in Adolescents and Young Adults with Cancer (PI: Bell) University Research Grant- WSU
Measuring Readiness to Engage in Discussions in Adolescents and Young Adults Living with Advanced Cancer (PI: Bell) -Currently enrolling adolescents and young adults with advanced cancer in Michigan.

Populations of interests

  • Adolescents and young adults
  • Special focus: with cancer or advanced diseases
  • Palliative Care and Hospice

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