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

Abstract

BackgroundTransitions 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.MethodsUsing 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.ResultsWithin 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.ConclusionThe 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.

Supportive care needs of rural individuals living with cancer: A literature review

“…The studies in this review revealed that nurturing supportive networks and close-knit communities often exist within rural areas (Duggleby et al, 2010;Rogers-Clark, 2002). Alternatively, challenges related to lack of privacy, feelings of isolation, and difficulties finding the appropriate support or support groups at home were also identified (Gray et al, 2004;Rogers-Clark, 2002).…”

“…The most noteworthy finding in the reviewed studies was that participants face challenges related to service provision in their rural communities. Of the 23 studies reviewed, 10 articles revealed service provision challenges such as lack of access to cancer information, limited access to professional or hospital assistance, and isolation from professional support or other supportive services were enduring challenges (Clavarino et al, 2002;Duggleby et al, 2010;Engleman, Perpich, Peterson, Hall, & Ellerbeck, 2005;Fitch et al, 2003;Gray, James, Manthorne, Gould, & Fitch, 2004;McConigley et al, 2011;McGrath, 2001;Rogers-Clark, 2002;Wilkes, White, & Riordan, 2000;Wilkes, White, Mohan, & Beale, 2006).…”

“…Examples of positive features of rural life include: the positive culture and supportive community networks (Pesut et al, 2010;Wilkes et al, 2000); a sense of peace and the benefits of being part of a close-knit community (RogersClark, 2002); survivorship and stoicism developed through past experiences of living in a rural setting (Rogers-Clark, 2002); individuality and connectedness to the community (Duggleby et al, 2010); and support from the wider community (McGrath et al, 1999). Moreover, emotional and psychosocial well-being was often maintained even when relocation was required.…”

“…Although most individuals make a conscious choice to reside in a rural community, rural health care is nonetheless an important public health concern. The literature suggests that individuals enjoy rural life for many reasons, including a close-knit community of support, positive cultural experiences, a sense of peace or harmony, and enhanced autonomy in daily life (Duggleby et al, 2010;Kuliq & Williams, 2012;Rogers-Clark, 2002;Wilkes & White, 2005). However, individuals living with cancer may choose to leave rural areas so they are closer to specialized medical care.…”

Les besoins en soins de soutien des personnes vivant avec le cancer dans des régions rurales : une recension de la documentation scientifique

“…Bien que la plupart des personnes choisissent consciemment d'habiter dans des régions rurales, les soins de santé dans ces régions constituent un important enjeu de santé publique. La documentation scientifique semble indiquer que les gens aiment la vie rurale pour différentes raisons, dont une communauté de soutien serrée, des expériences culturelles positives, un sentiment de paix ou d'harmonie et une autonomie accrue dans la vie quotidienne (Duggleby et al, 2010;Kuliq & Williams, 2012;RogersClark, 2002;Wilkes & White, 2005). Cependant, les personnes atteintes de cancer peuvent choisir de quitter les régions rurales afin d'habiter plus près des centres de soins médicaux spécia-lisés.…”