New and Unexpected; Significant Transitions for Rural Persons with Advanced Cancer and their

Families

CIHR ICE grant HOA-80057 titled ‘Timely Access and Seamless Transitions in Rural Palliative/End-of-Life Care’ was funded through CIHR Institute of Cancer Research and CIHR Institute of Health Services and Policy Research to A. Williams and D. Wilson (Co-PIs), and Co-Investigators: K. Brazil, D. Brooks, N. Chappell, W. Duggleby, R. Fainsainger, L. Fillion, D. Cloutier-Fisher, D. Goodridge, C. Justice, S. Kaasalainen, M.L. Kelley, K. Kovacs-Burns, M. MacLean, D. Marshall, V. Menec, J.L. Richards, C. Ross, A. Taniguichi, R. Thomas, C. Truman, and K. Willison”.

Significance & Background Terminally ill persons and their families experience many

confusing and at times traumatic transitions which are further intensified in rural areas.

In order for oncology nurses to effectively provide care for this rural population, it is important to understand these transitions, their significance and impact.

Purpose The purpose of this qualitative study (Phase 1) is to explore transitions experienced by older rural palliative patients and their families from the perspective of bereaved family members.

MethodsUsing theoretical purposeful sampling, 20 open-ended, in-depth audio taped interviews were conducted with 10 caregivers within the first year of bereavement after providing care to a spouse with terminal cancer.

8 Females & 2 males Mean age: 62 years (49-54 yrs) Mean length of time caregiving: 19.7 months (2-48 months)

Data were analyzed using constant comparative methods as part of the descriptive initial coding of Charmaz’s (2006) analysis.

Findings Participants described their most difficult transitions as being

unexpected, sudden and new as they had no prior experience with these transitions.

Two emerging themes reflected the most significant transitions:

1. Changes in the environment

Changes in the environment included physical transitions within the home environment during the person’s illness and changes in the setting of care form home to hospital and/or long term care.

2. Roles and Relationships

Changes in roles and relationships evolved as the terminally ill person became more dependent in activities of daily living.

These findings provide a greater understanding of transitions in an understudied population and a focus for the development of interventions for oncology nurses.

Although it was clear in the findings that transitions vary depending upon individual situations, preparing families and palliative care patients for these transitions through advance planning could possibly mitigate the associated distress.

Project 10 System Navigation Tool

This study is one of 10 projects of a multidisciplinary pan-Canadian research team* designed to improve Palliative and End of Life care for rural terminally-ill/dying persons and their families (including caregivers).

Project 10 is lead by Dr. Wendy Duggleby. The overall purpose of Project #10 is 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.

This three-year study includes 3 phases: Phase 1. A qualitative study exploring transitions experienced by older rural palliative patients and their families from the perspective of bereaved family members and health care providers as also identified by palliative care providers and bereaved (post death) family members;

Phase 2. The development of a system navigation tool for rural older palliative patients and their families based on the qualitative findings and;

Phase 3. Pilot testing of the tool.

The study is being conducted in the PA Parkland, Five Hills and Sunrise Health Region Saskatchewan Canada

Photo Credit: 100km From North Battleford SK - Blue & Orange Prairiehttp://www.flickr.com/photos/ramcguire/7518031/

Pat Berry, PhD, APRN, BC-PCM, University of Utah

Wendy Duggleby, PhD, AOCN University of Saskatchewan