Dysphagia following non-surgical management for head and neck cancer: Using the ICF to explore the rehabilitation needs of survivors and their carers

Abstract

Dysphagia, or difficulty swallowing, is a common acute and long-term side effect of curative, non-surgical treatment for head and neck cancer (HNC). Despite what is known about dysphagia associated with HNC treatment in terms of its prevalence, severity, physiological characteristics, and the associated effects on quality of life (QoL), there remains a considerable gap in our understanding of the impact of dysphagia on the daily lives of HNC survivors. In addition, as eating and drinking are largely social activities, the presence of dysphagia is also likely to impact on the daily life of carers. In order to better meet the needs of HNC survivors with dysphagia and their carers, there is a need to elucidate their main concerns, as well as understand their perspectives of what is required to adjust to, and live successfully with, dysphagia post-treatment. Therefore, the primary aim of this thesis was to describe the experiences of living with, and adjusting to, dysphagia post-treatment from the perspective of both the individual with dysphagia and the carer. Furthermore, with growing recognition of the multifaceted impact of dysphagia on both HNC survivors and their carers, there is a need to use a consistent and universal taxonomy when reporting outcomes, both in research and clinical practice. The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) is a conceptual framework that provides a biopsychosocial perspective of functioning, using an internationally recognised language. Despite the potential of the ICF to highlight the complexities of dysphagia for both HNC survivors and their carers, to date, there has been limited application of the ICF to this population. Therefore, the secondary aim of this thesis was to explore the possible application of the ICF domains and category codes relevant to people with dysphagia following HNC and their carers. This study was composed of two distinct phases. In the first phase, 24 people with self-reported swallowing difficulties, who had undergone curative, non-surgical management for a primary HNC, and 12 carers, participated in individual, semi-structured, in-depth interviews. During the interviews, HNC survivor participants were encouraged to speak openly and to describe their experiences of living with, and adjusting to, dysphagia both during and following their treatment. Similarly, carer participants were asked to reflect on the effect of their partner’s dysphagia on their everyday life. Thematic analysis of the interviews conducted with HNC survivors with dysphagia revealed far-reaching life effects as a result of their swallowing difficulties including: 1) physical changes related to swallowing; 2) emotions evoked by living with dysphagia; 3) altered perceptions and changes in appreciation of food; 4) personal and lifestyle impacts; 5) entering the unknown: life after treatment for HNC; 6) making practical adjustments to live with dysphagia; 7) making emotional adjustments to live with dysphagia; 8) accessing support iii outside hospital services; 9) perceptions of dysphagia-related services; and 10) desire for ongoing access to dysphagia-related services. Similarly, carers also demonstrated a number of effects as a result of their partner’s dysphagia including: 1) dysphagia disrupts daily life; 2) carers make adjustments to adapt to their partners’ dysphagia; 3) the disconnect between carers’ expectations and the reality of dysphagia; and 4) experiences of dysphagia-related services and informal support. In the second phase of the study, the themes from the interviews conducted in the first phase were linked to the ICF to identify the most typical and relevant domains and categories for both HNC survivors with dysphagia and their carers. The categories and sub-categories from the interviews with the participants with dysphagia were linked to the ICF domains of Body Functions, Activities and Participation, and Environmental Factors almost equally, with Body Structures rarely mentioned. The majority of categories and sub-categories from the carer participant interviews were linked to the Activities and Participation component of the ICF, highlighting the pervasive effects of dysphagia on the life of the carer. A number of contextual factors, including Environmental Factors and Personal Factors, were also identified, which influenced the functioning of individuals in both participant groups. This thesis demonstrates that dysphagia following non-surgical HNC management has a considerable impact on the lives of both HNC survivors and their carers, with both groups experiencing activity limitations and participation restrictions as a result of dysphagia. These impacts are not confined to the early post-treatment period, and can continue for months and years following treatment. This series of investigations highlights the need for greater access, and more targeted and holistic services for HNC survivors with dysphagia. In addition, carers should be viewed as co-partners in dysphagia management and therefore be included in the rehabilitation process.