Supporting quality of life assessments of frail older adults and their family caregivers

About the Project:

Older adults living at home facing frailty and chronic illness, and their family caregivers, often experience challenges affecting their quality of life. Their priorities must be addressed by healthcare providers. Unfortunately, these are easily overlooked in the “hustle and bustle” of care. Tools for assessing quality of life make the priorities of patients and family caregivers visible to healthcare providers and leaders. Our goal is to develop resources to support the use of quality of life assessment tools.

The resources will be tailored to four knowledge user groups:

  1. Older adults living with frailty at home and their family caregivers
  2. Healthcare providers
  3. Healthcare organization leaders
  4. Government leaders and decision-makers

We will meet with each group to identify their needs and the types of resources that would be helpful to them. Working with each group, we will develop customized resources that include education materials (for in person and self-guided learning), videos, and communication tools. These materials will be made freely available via an existing online person centred health information system, called the Quality of Life and Practice Support System (QPSS). The QPSS allows patients and family caregivers to complete quality of life assessment tools and share their information with healthcare providers.

This project will help put the voices of older adults living with frailty, and of their family caregivers, at the centre of healthcare. This goal unites patients, families, clinicians, and healthcare and government leaders in the pursuit of a Canadian healthcare system that meets the needs of all Canadians.

Project Team

Principal Investigators:

Co-Investigators:

  • Robin Cohen, PhD, MSc, BSc — Jewish General Hospital
  • Lena Cuthbertson, MEd, BHSc (OT) — BC Ministry of Health
  • Neil Hilliard, MD, MCFP-PC — Fraser Health Authority
  • Esther Laforest, BScN — McGill University
  • Joakim Ohlen, PhD, MScN, BSc, BScN — University of Gothenburg
  • Lara Russell, PhD, MA, BSW, BScN — Centre for Health Evaluation and Outcome Sciences
  • Kelli Stajduhar, PhD, MScN, BScN — University of Victoria
  • Tracy Stephen, MN — Trinity Western University
  • Landa Terblanche, PhD, MScN, BScN — Trinity Western University
  • Angela Wolff, PhD, MSN, BSN — Trinity Western University

Collaborators:

  • Janet Carlson, MN, NP — Alberta Health Services
  • Shelly Cory, MSc, BA (Hons.) — Virtual Hospice
  • Jill Gerke, MA, BA — Island Health
  • Mehri Karimi-Dehkordi, PhD, MScN, BScN — University of Ottawa
  • Melissa Kuo, ScD (OT) — University of Alberta
  • Barbara MacLean, MA — Family Caregivers of BC
  • Janet McLean, MBA, B.Comm — Family Caregivers of BC
  • Barbara McLeod, MScN, BScN — Fraser Health Authority
  • Michelina Manchuso, MBA, BSc — New Brunswick Health Council
  • Lisa Zetes-Zanatta, MSc, BSc — Fraser Health Authority

HQP:

  • Dominique Duquette, RN, BScN, MN — University of Alberta
  • Taryne Lepp, MPH, BScN — Trinity Western University
  • Chung Liu, MSc, BA (Hons.) — British Columbia Office of Patient-Centred Measurement & Improvement

Project contact: Richard Sawatzky — rick.sawatzky@twu.ca

CAT2018-17

Keywords: quality of life assessment; person-centred care; patient-reported outcomes; family-reported outcomes; life-limiting illnesses; family caregivers