End-of-life Cancer Care Among Adults with Intellectual or Developmental Disabilities

Co-leads

Dr. Alyson Mahar, PhD, Queen’s University; School of Nursing

Dr. Rebecca Hansford, PhD, Queen’s University; School of Nursing

Research Assistants

Sophia Shi, BHSc [In Progress], Queen’s University

Study Co-investigators

Harvey Chochinov, MD, PhD, CancerCare Manitoba Research Institute

David Dawe, MD, MSc, University of Manitoba

Katie Goldie, PhD, RN, Queen’s University School of Nursing

Julie Hallet, MD, Sunnybrook Research Institute

Tim Hanna, MD, PhD, Queen’s CCE

Tara Horrill, PhD, BN, University of Manitoba

Christine Kelly, PhD, University of Manitoba

Yona Lunsky, PhD, C.Psych, Centre for Addiction and Mental Health (CAMH)

John Queenan, PhD, Queen’s University

Hsien Seow, PhD, McMaster University

Shahin Shooshtari, PhD, University of Manitoba

Kyle Sue, MD, University of Alberta

Rinku Sutradhar, PhD, ICES

Alicia Thatcher, MD, University of Saskatchewan

Colleen Webber, PhD, Bruyere Health Research Institute

Brooke Wilson, MBBS, MSc, FRACP, Queen’s University

Knowledge Users

St. Amant Centre

Inclusion Canada

Ongwanada

Cancer Care Ontario

Surrey Place Centre

Manitoba Centre for Health Policy

Community Living Ontario

Autism Alliance of Canada

Cancer Care Manitoba

L’Arche Canada

Advisory Committee

Melanie Heroux, Self-Advocate Advisor

Yvonne Spicer, Self-Advocate Advisor

Theresa Somerton, Self-Advocate Advisor

Pam Howard, Family Advocate Advisor

William Hulme, Self-Advocate Advisor

Paula Holmes-Rodman, Family Advocate Advisor

Kristen Hovet, Self-Advocate Advisor

Carrie Batt, Family Advocate Advisor

Niko Pupella, Self-Advocate Advisor

John Del Carmen, Self-Advocate Advisor

Michelle Del Carmen, Family Advocate Advisor

We are still recruiting adults with intellectual or developmental disabilities and experience with cancer, and their families, to our advisory board. Please contact Hansford.rebecca@queensu.ca for more information

What? We want to learn about appropriate end-of-life cancer care for adults with intellectual or developmental disabilities to ensure everyone can be in control of their cancer care when approaching death.

Our team has four main goals:

Describe end-of-life cancer care provided to adults with intellectual or developmental disabilities.
Identify factors associated with worse end-of-life care for adults with intellectual or developmental disabilities.
Compare end-of-life cancer care between adults with and without intellectual or developmental disabilities.
Explore preferences and considerations of end-of-life cancer care delivery for adults with intellectual or developmental disabilities.

Why? Adults with intellectual or developmental disabilities are more likely to be diagnosed with non-curative cancer and to die with their cancer compared to those without disabilities. However, research exploring end-of-life cancer care among this population remains limited. There is a need to expand this research, with a focus on exploring the impact of existing end-of-life cancer care metrics and the ability to deliver and receive accessible and inclusive person-centred care.

How? In collaboration with adults with intellectual or developmental disabilities, their families and caregivers, we will gather evidence informed by lived experiences and administrative health data to identify gaps in end-of-life cancer care delivery.
Our methods include: 1) quantitative research comparing end-of-life cancer care among adults with and without intellectual or developmental disabilities; 2) qualitative research exploring the lived experience of adults with intellectual or developmental disabilities with incurable cancer, and their caregivers

Impact of findings: Our findings will provide necessary information to inform the development of person-centred metrics and evidence-based clinical guidelines tailored for adults with intellectual or developmental disabilities with cancer at the end of their life. This research will support the delivery of equitable and high-quality cancer care for adults with intellectual or developmental disabilities and their families through compassionate, appropriate, and responsive end-of-life support grounded in informed practice.

**Accepting Master's and Doctoral students

**We are still recruiting adults with intellectual or developmental disabilities and experience with cancer, and their families, to our advisory board. Please contact Hansford.Rebecca@queensu.ca for more information.

Funded By

Canadian Institutes of Health Research Project grant #518832