- Dr. Alyson Mahar, PhD, Queen’s University; School of Nursing
- Dr. Rebecca Hansford, PhD, Queen’s University; School of Nursing
- Accepting Masters and Doctoral students
- Sophia Shi, BHSc [In Progress], Queen’s University
- 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
- 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
- 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.