The current study adopted a patient-centred, qualitative approach to examine the patients’ perspective on speech pathology services during and in the months following treatment for head and neck cancer. Despite numerous studies conducted into the prevalence and nature of dysphagia in the survivorship phase of treatment, the full impact remains poorly understood. This is a time when patients are coping with side effects of treatment and the challenges of adjusting to temporary or permanent changes to their ability to eat, and thus the need for speech pathology services requires elucidation.
Purposeful, maximum variation sampling was utilised to recruit 26 participants who had undergone radiotherapy as part of their curative treatment for a mucosal head and neck cancer in the past 5 years. All participants had access to speech pathology services during their treatment. Each participated in an in-depth interview, detailing the full impact of dysphagia and experiences with speech pathology services. Data collection and analysis were conducted simultaneously and recruitment continued until data saturation was reached. Thematic analysis was utilised to categorise themes and identify common concerns and key phrases from the transcripts.
The main themes identified were: 1) Patients generally underestimated the extent of side effects and associated recovery time; 2) Differences in perspectives between patients and clinicians; and 3) Patients perceived a lack of follow up from speech pathology services post-treatment. Patients expressed a desire for changing models of healthcare to include follow-up services in the survivorship phase of care.
These data confirm the clinical belief that dysphagia has a negative and multi-faceted impact on the patient in the survivorship phase of care. The findings outline the dimensions of that impact, and highlight the need for new models of long term support to help individuals adjust to changing physical states and enhance psycho-social adjustment.