Interpretations of patients' and informal caregivers' psychosocial experiences and needs for support following oropharyngeal cancer (chemo)radiotherapy
Background: Increased incidence of oropharyngeal cancer in middle-age is attributed to the human papillomavirus (HPV). Although it often has a good prognosis, treatment can leave severe side effects. A new management approach introduced in 2018 aims to reduce morbidity in survivorship, but psychosocial experiences and support needs on the pathway following (chemo)radiotherapy remain unknown. Method: Two systematic reviews established existing knowledge, firstly related to HPV+ve oropharyngeal cancer patients (meta-ethnography), and secondly informal HNC caregivers (narrative review). A qualitative approach then enabled exploration of early recovery on the new pathway. 16 patient and 9 caregiver semi-structured interviews were transcribed and coded using the Framework Method. Themes were developed using Interpretative description and inductive Reflexive Thematic Analysis to depict experiences and support needs. Health behaviour theories informed analysis, including recognition of similarities between patient and caregiver findings. They also enabled mapping of interventions to unmet needs, to develop proposals for tailored support during consultation with clinicians, patients and caregivers (PPI). Findings: Past research identified patients’ unrealistic expectations of recovery and gaps in support, and the impact of the caregiving role, including upon relationships. The current study built upon those findings. Five patient themes were developed revealing the ‘Rollercoaster of early recovery’ and ‘Disruption to self-identity’, which informed ‘Expectancy of recovery’, ‘Coping with disruption and uncertainty’ and ‘Accessing support’, impacting illness interpretations for self-management. Themes depicting caregivers’ experiences included an overarching theme of an ‘Emotional Journey’, with sub-themes conveying the role and its impact on the individual and the dyad. ‘Expectancy development’, a fourth sub-theme, incorporated similar anticipation and uncertainty, as for patients, from the ‘Waiting game’; an interpretation of the new pathway. Two further caregiving themes conveyed ‘Coping’ and ‘Support in the role’. Unmet needs and moderators of uncertainty, including personal characteristics, preparedness for caregiving and perceived availability of support, were identified. Following consultation, deeper understanding enabled prioritisation of proposals for support as recommendations. Uncertainty during early recovery on the new pathway may be mitigated by internet-based access to peers’ experiences to help shape expectations. Conclusions: This study provides new knowledge of the experiences and support needs of patients and caregivers following treatment, managed according to the new pathway. An understanding of the caregiver role has been developed. This thesis has also demonstrated the use of a novel method to triangulate study findings with past research and clinician and PPI consultation, in order to propose and prioritise tailored supportive interventions.
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