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Open Access Research article

The transition experience of rural older persons with advanced cancer and their families: a grounded theory study

Wendy D Duggleby1*, Kelly L Penz2, Donna M Goodridge3, Donna M Wilson1, Beverly D Leipert4, Patricia H Berry5, Sylvia R Keall6 and Christopher J Justice7

Author Affiliations

1 Faculty of Nursing, University of Alberta, 3rd floor Clinical Sciences Building, Edmonton Alberta, T6G 2G3, Canada

2 Nursing Division, Saskatchewan Institute of Applied Science and Technology, 4500 Wascana Parkway, Regina Saskatchewan, S4P 3A3, Canada

3 College of Nursing, University of Saskatchewan, Health Sciences Building, 107 Wiggins Road, Saskatoon, Saskatchewan, S7N 5E5, Canada

4 School of Nursing, University of Western Ontario, Health Sciences Addition, London, Ontario, N6A 5C1, Canada

5 Hartford Center of Geriatric Nursing Excellence, College of Nursing, University of Utah, 10 South 2000 East Front, Salt Lake City, 84112-5880, USA

6 Five Hills Health Region, 1000 Albert Street, Moose Jaw, Saskatchewan, S6H 2Y2, Canada

7 Department of Anthropology University of Victoria, 3800 Finnerty Road Victoria British Columbia V8W 3P5, Canada

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BMC Palliative Care 2010, 9:5  doi:10.1186/1472-684X-9-5

Published: 26 April 2010

Abstract

Background

Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population.

Methods

Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach.

Results

Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of "Navigating Unknown Waters". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes.

Conclusion

The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.