Abstract
In Aotearoa New Zealand (Aotearoa) endometrial cancer is the 5th most frequently diagnosed cancer. Incidence rates are increasing for all ages, with the fastest rates seen in those under 50 years. The burden of endometrial cancer is disproportionately experienced by Māori and Pacific Peoples and their communities. Five-year survival rates for endometrial cancer are above 80%, however endometrial cancer survivors experience a significantly heightened risk of morbidity and mortality from cardiovascular disease due to shared risk factors. Survivorship care after endometrial cancer provides an opportunity to modify cardiovascular risk factors to reduce morbidity and mortality from cardiovascular disease for this population group.
Across Aotearoa, nutrition and lifestyle advice is not routinely incorporated into the cancer care pathway for endometrial cancer survivors. Research that explores the perspectives, opinions and needs of people with endometrial cancer on nutrition and lifestyle advice as part of survivorship care is limited in Aotearoa and overseas.
The overall aim of the research was to investigate how to facilitate access to nutrition care as part of survivorship care for people who have had endometrial cancer in Aotearoa. The objectives of the research were to explore perspectives of health professionals and people who have had endometrial cancer and bring the findings together in a clinically translational and tangible format.
Firstly, the viewpoints of health professionals who care for people with endometrial cancer in Aotearoa were explored through semi-structured interviews using a grounded theory approach. Reflexive thematic analysis was used to construct six themes. The first two themes (1) Concerns for the future and (2) Impact on fertility and treatment options described the changing landscape of endometrial cancer in Aotearoa. Healthcare professionals discussed rising incidence in younger people and a need for increased awareness about the association of high weight as a risk factor for developing the disease. The concern extended to workforce and equipment shortfalls of meeting the needs of individuals with higher weight, which subsequently influenced treatment options, health outcomes and survivorship.
The second set of themes, consisting of four themes, explored the barriers to and facilitators of delivery and uptake of nutrition advice to people diagnosed with endometrial cancer. This included how to navigate conversations about high weight, access to limited resourcing, health professionals feeling powerless to overcome system influences and a need for a community approach to facilitate a supportive environment and share knowledge.
Next, the perspectives of people with a recent history of early-stage endometrial cancer diagnosis were explored through conversations, the aim of which was to understand the lived experiences of being offered nutrition and wellbeing advice. The participants were from diverse cultural heritage and included 5 Māori, 5 European and 5 Pacific Peoples. Five themes were derived: (1) Isolation and vulnerability, (2) Importance of language, (3) Inconsistent availability and relevance of nutrition and wellbeing information, (4) Competing priorities and influences and (5) Holistic and culturally responsive support. People often experienced judgement associated with their weight as part of their care with limited understanding of their lived realities. Nutrition and wellbeing advice was not widely available or accessible. A need for culturally safe holistic care was identified.
Lastly, a small-group health professional education session was designed and developed following the integration of the findings from the first two studies. Health professionals participated in a learning session on the topic of navigating conversations about high weight and cardiovascular risk factors. On evaluation participation in the session significantly increased confidence in having conversations about high weight and health professionals felt they were more aware of their own bias and assumptions.
Collectively the studies in this thesis provide novel insights into the perspectives of health professionals and people with lived experience of endometrial cancer diagnosis and treatment in Aotearoa. Fundamentally this research highlights the importance of incorporating the perspectives of people who have experienced cancer into the design of survivorship services in order to facilitate equitable access to care. Implementing holistic culturally responsive care as part of the survivorship pathway provides an opportunity to increase equitable health outcomes for people with endometrial cancer in Aotearoa.