1. Page 1 Project 10 May 20 th, 2010 Interdisciplinary Capacity Enhancement (ICE) Funding through CIHR Inst. of Cancer Research and CIHR Inst. of Health Services and Policy Research. HOA- 80057

2. Page 2 Team Members Wendy Duggleby (PI) Donna Goodridge Christopher Justice Bev Leipert Denise Marshall Kathleen Willison Alan Taniguchi Donna Wilson Pat Berry Lori Cooper – M.A. Trainee R.As - Kelly Penz, Alana Ferguson, Megan Steeves

3. Page 3 Purpose To develop and pilot test a System Navigation Tool (SNT) suitable for older terminally ill patients and their families in rural communities that facilitates timely access and seamless transitions.

4. Page 4 Purpose Three Phases: 1.Qualitative Transitions Study 2.Development of the Tool Using a Delphi Expert Panel 3.Pilot Testing

5. Page 5 SNT: Changes Tool

6. Page 6 Pilot Testing of Changes Tool for Rural Palliative Patients and their Family Caregivers Lori J. Cooper, BSN, Masters of Nursing Student College of Nursing University of Saskatchewan May 20, 2010

7. Page 7 Purpose The purpose of this pilot study is to evaluate the Changes tool for ease of implementation, feasibility, acceptability, and to assess the potential for increasing quality of life and hope for older palliative care patients and their family caregivers in rural communities

8. Page 8 Aims 1)Evaluate the study procedures to determine if they are realistic and workable 2)Evaluate the tool for ease of use, acceptability, and feasibility 3)Collect preliminary data to determine potential effectiveness of tool in increasing quality of life and hope scores

9. Page 9 Design Embedded quasi-experimental repeated measures mixed methods design Qualitative data collected to evaluate study procedures and tool

10. Page 10 Setting o The pilot study will take place in the rural area of the Prince Albert Parkland Health Region and the Saskatoon Health Region, two large north and centrally located respectively health care regions in Saskatchewan o Conducted in the homes of palliative care patients receiving services from a rural palliative home care program in either region

11. Page 11 Sample o Inclusion Criteria for Palliative Patients o Inclusion Criteria for Family Caregivers

12. Page 12 Recruitment o Non-random convenience sample o Rural palliative home care program coordinator will identify and approach potential patients using the stated inclusion criteria o If patients agree to speak with the researcher then the coordinator will relay the patient’s information to the researcher

13. Page 13 Independent Variable

14. Page 14 Dependent Variables o The outcomes to be measured are quality of life and hope of rural palliative care patients and their family caregivers o Palliative patients – McGill Quality of Life Questionnaire and Herth Hope Index o Family Caregivers – Quality of Life in Serious Illness- Family Carers and Herth Hope Index o Both – Demographic Form, Process Interviews, Data Collection Forms, Transition Tool Questionnaire and Evaluation Interview

15. Page 15 Data Collection Procedures Initial Visit Obtain informed written consent (patient and caregiver). Complete demographic forms, HHI and MQOL for patient and HHI and QOLLTI-F for caregiver. Explain tool with standardized instructions and present binder. Schedule second visit. Second Visit (approximately one week later) Discuss any transitions experienced and progress with binder; answer any questions (tape-recorded). Obtain checklist of activities worked on and time spent on each. Complete HHI, MQOL, and QOLLTI-F. Schedule third visit.

16. Page 16 Data Collection Procedures Third Visit (approximately one week later) Discuss any transitions experienced and progress with binder; answer any questions (tape- recorded). Obtain checklist of activities worked on and time spent on each. Complete HHI, MQOL, QOLLTI-F. Schedule final visit. Final Visit (approximately one week later) Discuss any transitions experienced and progress with binder; answer any questions (tape- recorded). Obtain checklist of activities worked on and time spent on each. Photocopy Changes binder progress completed to date. Complete HHI, MQOL, QOLLTI-F, Transition tool questionnaire and evaluation interview (tape-recorded). Thank patients and family caregivers Hand in information to principal investigator.

17. Page 17 What ’s Next?