Returning home: psychosocial care during the re-entry phase of cancer survivorship in rural Australia

Abstract

The purpose of this research was to highlight gaps in formal psychosocial care for cancer survivors in rural communities. The study was conducted in rural Victoria, Australia, and involved interviews with people with various stages of cancer progression, cancer diagnoses and survival times, who were interviewed about their experiences of psychosocial cancer care. Interviews focused on their experience of psychosocial care and were audio-recorded and transcribed verbatim. Data were thematically analysed to identify key themes. Findings demonstrate that psychosocial care is essentially informal within the re-entry period after cancer diagnosis and treatment. Despite current Australian clinical guidelines on psychosocial care for people with cancer, which indicate the need for the provision of formal psychosocial care, participants in this study largely cared for themselves, or received informal support from family, friends and community members. Many psychosocial needs remained unmet and professional support was lacking. While this study was conducted in rural Australia, many of our findings have been echoed in studies from other countries. The findings have implications for treatment protocols and discharge planning, health professional-patient-family relationships, and the long-term well-being of cancer survivors living in rural communities. A model for understanding the experience of formal supportive care during the re-entry phase of survivorship is proposed.

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

“…Our study highlighted the importance of having formal psychosocial support services in place for the rural cancer patient; many participants (mainly women) reported gaining comfort from such support as the diagnosis of cancer can be “overwhelming.” From our findings it is clear that patients can develop strong relationships with the people who provide them with material and psychological support, and that those supporter's personal qualities and “being there” at a challenging time is very important. Although the psychosocial well‐being of the patients in our study was addressed through the availability of professional psychosocial support (which may be due to their proximity to Bunbury and the reported use of videoconferencing to help with providing support), such support services are not widely available for rural cancer patients, with many psychosocial needs remain unmet (Howard et al., ; Lawler, Spathonis, Masters, Adams, & Eakin, ; Pascal et al., ). The challenges faced by rural health professionals in providing appropriate psychosocial support have also been documented (Breen & O'Connor, ).…”

“…However, rural cancer survivors can face particular challenges accessing follow‐up care and this has been noted as a particular concern (Howard et al., ; Lawler et al., ; Pascal et al., ). The findings from a study of rural cancer patients in Australia indicated that patients largely cared for themselves during the “re‐entry period” after diagnosis and treatment or received informal support from family and friends (Pascal et al., ). Our study confirmed this weakness and highlighted follow up support as a particular and important gap.…”

The consumer-driven development and acceptability testing of a website designed to connect rural cancer patients and their families, carers and health professionals with appropriate information and psychosocial support

“…However, successful examples of websites that combine the two are scarce, as are critical reflections on their acceptability and development. This paper makes a unique contribution by demonstrating that working flexibly and utilising both the literature and lived experience to guide the development of resources can foster trust, empower participants, help deliver results that are acceptable to those in both the academic and “real” worlds and help to address what has been described as “a void in formal psychosocial care in rural Australia” (Pascal et al., , p. 48). Although some of the lessons learnt have also been raised via participatory work in other contexts (e.g.…”

“…In addition, it can improve the external validity of research, create space for the expression of local knowledge, build trust and mean resulting programs are more sustainable (Wallerstein & Duran, ). Despite this, “a complete absence of any rural studies that involve people with cancer and their families in service planning” has been highlighted (Pascal et al., , p. 47) and there is “a significant gap in understanding how higher level community participation is best enacted in the rural context” (Kenny et al., , p. 1).…”

Understanding receptivity to informal supportive cancer care in regional and rural Australia: a Heideggerian analysis

“…A full presentation of the findings is beyond the scope of this article and published elsewhere (Pascal et al . ); hence we have narrowed the specific aims of this article to: Explore the experiences that both facilitate and challenge the receptivity to informal supportive care for people living with and beyond cancer in rural Australia. Develop a Heideggerian analysis in order to understand the central factors influencing receptivity to informal supportive care. …”