Abstract
Introduction: More people are living with, through and beyond cancer which makes cancer survivorship an increasingly important area of public health focus. Cancer survivors manage cancer and treatment-related health impacts and life complexity during and post-treatment. These cancer-related impacts, whether visible or invisible, can cause intermittent yet considerable problems. Cancer survivorship research explores ways to improve care and management for people living with, through or beyond cancer.
Evidence-based intervention is a fruitful area for cancer survivorship research. Intervention can inform survivorship care pathways. Chronic care approaches have not been adequately explored as a basis for survivorship intervention. Using Te Whare Tapa Wha and Wagner’s Chronic Care Model as theoretical frameworks, the application of supported self-management programs in cancer care is explored herein. This thesis reports on survivorship experiences and a pilot study of a supported self-management intervention program for cancer survivors in New Zealand (NZ).
Background: The objectives of this thesis are to report on NZ cancer survivors’ experiences and explore the acceptability, feasibility and pilot delivery of a supported self-management program. Supported self-management intervention programs aim to empower and support people living with chronic conditions to navigate social, physical, emotional and spiritual impacts associated with chronic disease management. The supported self-management intervention program chosen for trial, The Flinders Program, is tailored based on self-assessment surveys and guided interviews/sessions. It results in development of a care plan and, ideally, improved wellbeing. To date, supported self-management programs have not been trialled in NZ as a component of cancer care survivorship pathways that emphasise wellbeing.
Methods: The purpose of this study was to explore NZ survivors, as well as health and supportive care workers’, experiences of cancer treatment impacts and care gaps. A supported self-management intervention program was delivered in a NZ hospital setting to see if it could acceptably and feasibly address cancer survivor impacts and unmet needs. A Medical Research Council (UK) framework guided the two-phase study design. The pilot was limited to patients diagnosed with colorectal cancer because these cancers are common in NZ and intervention with colorectal cancer survivors is comparatively under-researched. The first phase of the study qualitatively explored the lived experiences of survivors and the views on survivorship held by a selection of health and supportive care workers. The data showed unmet survivor needs, existing self-management strategies employed, and possible acceptability of The Flinders Program. The second phase of the study piloted The Flinders Program with cancer patients over three sessions coinciding with standard appointments during treatment. Phase two aimed to test the feasibility of procedures for recruitment, randomisation, intervention delivery and outcome evaluation in outpatient cancer clinics. The intervention was delivered using a two-arm pre- post-assessment design to inform intervention acceptability and feasibility. Process evaluation explored enablers/ barriers of intervention delivery while distress, resilience, self-efficacy and quality of life patient-reported outcomes were assessed.
Results: The MRC Framework on complex interventions provided a strong structure for conducting planned and stepped intervention research. The phase one qualitative study findings were that both Māori and non-Māori cancer survivors experienced social, physical, emotional and spiritual impacts through cancer treatment that affected their ability to self-manage effectively during active treatment and in the post-cancer treatment transition and extended survival period. Survivor impacts were managed through survivorship work. Phase one data indicated cautious acceptability of The Flinders Program. Phase two data showed that the supported self-management intervention program is questionably feasible, but had the potential to contribute to improved self-management competence if issues related to enablers and barriers at the individual (i.e. self-management readiness) and environmental levels (i.e. staff resourcing) could be addressed.
Discussion: A Chronic Care Model-based supported self-management intervention, The Flinders Program, can be delivered in cancer care settings to address survivorship impacts. However, there are important differences between the setting of chronic conditions and the cancer clinical setting as identified by survivors’ shared experiences. The Flinders Program was deemed acceptable to both Māori and non-Māori survivors as well as health and supportive care workers participating in the pilot study but there were feasibility challenges associated with delivering the program in hospital-based cancer treatment settings. The Flinders Program did impact on patient-reported outcome measures but in no clear significant pattern or consistent manner. Further intervention research into supported self-management programs or other types of survivorship care is needed to progress survivorship care pathways.