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Pilot testing of a transition tool for rural palliative care patients and their family caregivers



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ABSTRACT There is a consensus in the literature that end of life care in rural areas is suboptimal. An intervention transition tool “Changes” was developed for older terminally ill patients and their family caregivers in rural communities to assist them with transitions that cause disruption in their lives. The tool incorporates activities reflecting the critical inputs of awareness, connecting, and redefining normal. "Changes" is an intervention in the form of a binder with an introduction and five sections: 1) Thoughts and Wishes, 2) Common Changes , 3) Resource Section, 4) Travelling Health Record, and 5) Included Resources. The binder utilizes activities to facilitate transitions, relays information on transitions and resources, and answers frequently asked questions. The purpose of this pilot study was to evaluate “Changes” for feasibility, acceptability and ease of use by rural palliative care patients and their family caregivers. The design for this pilot study was a mixed methods exploratory concurrent design with the quantitative data set providing a supportive secondary role to the qualitative data set. The quantitative data was portrayed through descriptive statistics of an evaluation questionnaire. The qualitative data was collected using an evaluation questionnaire and open ended audio-taped evaluation interviews and analyzed using the interpretive description methodology. Participants signed a written informed consent and completed a demographic form. Data was collected from eight palliative patients and eight family caregivers from two Western Canadian provinces in Canada. The mean age of the patients was 64.4 years (SD 12.7). Four patients were females and four were males. The length of time the palliative patient participants received palliative care services ranged from one month to 48 months, averaging 12.8 months (SD 17.8). The age of the family caregivers ranged from 55 years to 71 years of age, with a mean age of 65.5 years (SD 6.38). Their relationship to the palliative patient was wives (4), husbands (2), one was a son and another one a friend. The researcher (in Saskatchewan) as well as a trained research assistant (in Alberta) explained the transition tool to the participants and gave them the tool to look at and work on over a period of one week. The findings of the pilot study evaluation were positive with the majority of participants describing the intervention as acceptable, easy to use and having the potential to help deal with transitions. Revisions to the intervention tool were made based on the study participants recommendations. An expanding base of evidence demonstrates that serious deficiencies in quality exist for patients undergoing transitions within palliative care. By studying transitions experienced by palliative patients and their families such as in this study, the nursing care we provide will be based on the knowledge of the dying patient’s perspective and that of their family caregiver. This study contributes to the body of nursing knowledge regarding transitions occurring within palliative care and will assist in advocating for improved end of life care by providing evidence based health care. Due to the lack of research to date regarding the use of a transition tool, the findings from this study are unique. The results may in turn facilitate a provision of care by the implementation of “Changes” into nursing practice that will assist individuals approaching death, and those that care for them, in ways that will be meaningful to them.



Palliative Care, Rural, Transition Tool, Patients and Family Caregivers



Master of Nursing (M.N.)






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