Psychological Wellbeing and Challenges in the Journey of Rural Cancer Patients and Those That Care for Them

Abstract

<p>The aim of this thesis was to understand the psychosocial experiences of people with cancer in Australia, with particular emphasis on the psychosocial needs and opportunities for rural people, and those that care for them. Cancer is expensive and burdensome, for health services and for patients. Cancer diagnoses bring physical, social, emotional, and financial challenges, along with medical needs, and quality cancer care should address all these facets. By identifying health and wellbeing needs and disparities, steps can then be taken to understand and address them. However, the steps along the psycho-oncology support pathway, from screening to intervention, are not necessarily clear and consistent across all populations. </p> <p>The present research project consists of five studies, reported in five separate manuscripts in journal article format, all published or under peer review in Q1 journals. The project commenced just prior to a time of sudden disruption, as a result of the COVID-19 pandemic. The pandemic affected many aspects of people's lives and has played out in unexpected and unpredictable ways, particularly for those with chronic conditions such as cancer. Hence Study 1, a rapid systematic review, was conducted to understand the uniquely rural psychosocial impact of the pandemic, and to consider the effectiveness of tele-Mental-Health services for rural cancer populations across the world. This recognition of vulnerability of rural cancer patients internationally, beyond and irrespective of the pandemic, was extended with Study 2, a meta-analysis of correlational effect sizes that specifically investigated Australian rural and urban psychosocial outcomes for people with cancer. The findings from these two studies converge to suggest that people who experience cancer and live in rural areas experience a psychosocial "double whammy" – poorer wellbeing and greater barriers in accessing services to support them</p> <p>Narrowing the focus to a specific rural Australian population, the third study was a mixed methods design investigating the psychological experiences of rural people with cancer and their carers, and their perceptions of access to the services that might support them. The findings of this study suggested that cancer patient and carer populations in rural NSW experience worrying levels of psychological distress, alongside service access issues compounded by the pandemic and rural location. Patients and carers reported systemic, intrapersonal, interpersonal and pandemic-specific barriers to accessing quality psychosocial healthcare. Study 3 highlights that rural people with cancer, and those that care for them, require equitable access to interventions. </p> <p>The final two studies focussed on specific facets that may be relevant for psychosocial assessment and intervention in cancer support programs. Specifically, mental adjustment to cancer refers to a range of coping behaviour and cognitions that are predictive of other important factors and outcomes associated with chronic illness, such as distress and quality of life. Study 4 comprised factor analysis evaluations of a common psycho-oncology measure, the Mini-Mental Adjustment to Cancer Scale, in an Australian cancer population. These analyses suggested that a four-factor version of this scale, appeared most appropriate for this sample. Using this model of the Mini-MAC, the fifth and final study in this research project suggested that, whilst rural people with cancer require specific and focussed recognition of the unique challenges that face them in their cancer experience, positive psychology concepts, such as self-compassion, may provide a fruitful avenue to consider for effective support and intervention.</p> <p>Overall, the results across the five studies suggested that, compared with their urban counterparts, rural people with cancer, and rural carers of people with cancer, experience disparate psychooncology needs and significant psycho-oncology service access barriers. Rural people with cancer and their carers do not seem to experience a cancer diagnosis in the same way as urban people, with arguably higher levels of psychosocial concerns and fewer services they can access for assistance. However, this series of studies suggest there are opportunities that service providers can employ to effectively and efficiently screen for and identify those psycho-oncology needs, whilst adding empirical weight to the role of psychological factors that relate to wellbeing outcomes. The findings have implications for the inclusion of scalable and quantifiable psychological interventions in psychooncology services. These services can specifically focus on early identification and clinical intervention for Australian rural people with cancer. </p>