Background Early access to palliative care is potentially most effective when targeted to the specific needs of individual populations. Patients with head and neck cancer represent a complex group and there is limited information about the challenges they face. The aim of this study was to explore patient, family carer and healthcare professional perceptions about challenges and unmet needs to inform potential components of a future model of palliative care.
Methods Qualitative semi-structured face-to-face and telephone interviews were conducted drawing upon a naturalistic, interpretative approach. Within Northwest England, a purposive sampling approach of patients with advanced head and neck cancer was adopted who were fully aware of diagnosis and able to provide informed consent. Where possible, for each patient, a family carer was asked to participate. Healthcare professionals were identified using a snowball sampling strategy. At least one clinical representative from each of the following were identified: Head and Neck Surgery; Oncology; Specialist Palliative Care; General Practice and Community Nursing. Interviews were transcribed and analysed using a thematic approach. Ethics committee approval was obtained for the study.
Results Nine patients, four family carers and eight healthcare professionals participated.
Main themes identified related to ‘challenges and unmet needs’: increased support needed at specific ‘critical’ moments in patient’s trajectory; communication challenges and complexities of decision-making. Additionally, relating to components of a future ‘palliative care model’, themes were: partnership model; timely and responsive engagement of specialist palliative care; and good linkage and connections.
Conclusions This study provides multi-perspective views about the current challenges in providing palliative care for this population. Conceptually, there appears to be ‘critical moments’ in the patient’s disease trajectory when additional support and information is required for the patient and family. Interventions targeted at these times would be pertinent to help evolve a service tailored to needs.
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