Enhancing self-care self-efficacy and symptom experience of women with breast cancer-related lymphoedema: piloting the web-based LYSCA intervention

Breast cancer-related lymphoedema (BCRL) is a chronic condition affecting more than 20% of breast cancer survivors. Physical symptoms, functional limitations and associated psychosocial concerns have a significant impact on women with this condition. Like othe rchronic conditions (e.g., diabetes), management of BCRL involves the enactment of various self-care behaviours that are critical for successful disease control. As poor long-term management of non-communicable diseases is generally associated with an exacerbation in physical and psychosocial symptomatology, encouraging sustained effective self-management is a focus for healthcare providers. Delivery of behavioural interventions to enhance chronic disease management via digital means, such as the mobile phone or internet, is a potentia lapproach to enhance BCRL self-management behaviours. Moreover, self-efficacy is thought to be an integral part of the behaviour change process. As such, this thesis has two aims, to undertake a: (1) Systematic review to identify the impact of digital behavioural interventions on user self-efficacy for self-care in a chronic disease management context; and (2). Pilot study to investigate the effect of a specific digital behavioural intervention, LYSCA (Lymphoedema Self-Care) on self-care self-efficacy, lymphoedema symptom intensity and distress, and cognitive and affective illness representations regarding lymphoedema in women with BCRL. The systematic review evaluated 15 empirical studies, with six reporting a statistically significant improvement in user self-efficacy. Of these studies, four papers reported medium to large effect sizes for change in self-efficacy. It was concluded that digital interventions for behaviour change show potential to positively influence user self-efficacy. Consequently, it is important that self-care self-efficacy should be a focus for developers of digital behaviour change interventions and health psychologists seeking to enhance chronic disease self-care behaviours, such as BCRL. The pre-post design pilot study was then conducted to assess the impact of LYSCA. Participants (N = 97 women with BCRL) completed study questionnaires before being given access to the LYSCA website and an accompanying daily diary, which together aim to facilitate better lymphoedema management through enhanced self-care self-efficacy and behaviours via goal setting. Follow-up assessments were undertaken at 1- and 2-monthsincluding self-care self-efficacy, lymphoedema symptom intensity and distress, and adherence to self-care behaviours. Secondary outcomes include a range of cognitive and affective representations of lymphoedema. Multilevel linear mixed model analyses indicated significan tincreases over time in self-care self-efficacy, and reductions in lymphoedema-related symptom intensity and distress, but no in adherence. Illness coherence and emotional representations regarding lymphoedema changed significantly following exposure to the intervention. These preliminary results support the use of the LYSCA intervention to reduce symptom intensity and enhance self-care management of lymphoedema. Future research utilising a randomised controlled design is needed to investigate the full potential of the LYSCA intervention for facilitating lymphoedema self-care.