Rural encounters with cancer: a study of the lived experience of people in the Central West of New South Wales

Ruth Jones

Research output: ThesisDoctoral Thesis

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Abstract

This qualitative phenomenological study aims to contribute to a deeper understanding of the cancer journey in a rural context by exploring, articulating and analysing the unique challenges faced by people following a cancer diagnosis in the Central West of NSW. Cancer survival rates in Australia rival the best across the world, yet there is clear evidence that people with cancer in rural and regional areas have not had equitable access to the range of services considered best cancer care.

The two main aims of the study are to: (i) identify, explore and fully describe people’s experiences of the processes involved in receiving a diagnosis of cancer; and (ii) interpret the meaning this phenomenon holds for people with cancer in the context of rural NSW.

The research question for the study was:
What are the experiences of people in the Central West of NSW in relation to being diagnosed with cancer?

Criterion sampling was used to recruit eight participants ensuring each had experience with the phenomena of a cancer diagnosis in the Central West region. Using Moustakas’ (1994) phenomenological approach enabled the development of a rich description of the experience of a diagnosis of cancer and the meaning embedded in that experience. Semi-structured interviews generated data and the language used; the words, phrases, images and metaphors chosen by the participants shaped the research and illuminated each individual experience of a cancer diagnosis.

The participants described the journey of cancer and the impact on his or her life. Four primary themes emerged: Shock at the diagnosis, Grief for the life that’s lost, A thirst for information and A new life. For many the impact of cancer was dramatic and all-encompassing; the chaos of a cancer diagnosis was profound and individual. The Impact of Rurality was a theme which cut powerfully across the primary themes revealing the burden faced by each participant in this context. Participants spoke of feeling isolated, uncertain, and lacking support during their cancer diagnosis and treatment period.

For each participant, their cancer ‘life world’ became a long-term search for meaning which resulted in changing their concept of ‘who I was’ to ‘who I am now’; that is, how to live with, through and beyond cancer. Participants felt the absence of care coordination, education and support from health professionals throughout their journey contributed to their existential crisis following diagnosis.

Each cancer journey is a unique experience for both the person affected and their loved ones, and this was evident from the interviews with the participants. This study revealed the importance of a primary and community health, nurse-led model of care coordination, supported by medical specialists, a multidisciplinary team and clinical practice guidelines. This would ensure information and support with navigating the health care system would be provided across the continuum of care. In the rural context, staff development and education are imperative, both online and face to face, to increase awareness of the inherently life changing nature of cancer and provide a knowledge base for nurses and other clinicians.

The development of eSupport, which utilises technology to provide virtual psychological support, information and education would reduce the isolation felt by people with cancer in rural communities and enable efficient use of resources, regardless of location. Other recommendations include the need for recognition by general practitioners, surgeons and specialists that people with cancer have a fundamental right to access patient-held, person-centred, customised treatment plans that function as a living document, provide people with information and diminish the profound impacts of a cancer diagnosis.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Charles Sturt University
Supervisors/Advisors
  • Bramble, Marguerite, Principal Supervisor
  • Crowther, Andrew, Co-Supervisor
  • de-Vitry Smith, Sally-ann, Co-Supervisor
Place of PublicationAustralia
Publisher
Publication statusPublished - 2019

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