Abstract
This qualitative study involved an exploration of the journey from diagnosis through to life post restorative surgery for people with Head and Neck Cancer (HNC). The aim was to understand how patients adapt to life post treatment and rehabilitation exploring how they adjust to changes in look and function. This work also focused on cultural schemas, and attitudes about the mind and body.Methods: This is a qualitative study using ethnography as its methodology. It employs a combination of documentary analysis, observations and in-depth interviews to explore the experiences of people with HNC, looking at patients using the Southeast London Community Head and Neck Cancer Team (CHANT). The research was conducted in three stages. To capture the macro view a document analysis of policy documents was carried out, observations of the key settings provided a meso level and the individual narrative was captured by in-depth interviews (the micro level). Some observations took the form of mini focused ethnographies, which observed key clinical encounters but also observed the day-to-day clinical environment in which patients step into. This was used to inform the interview stage, create relationships with interview participant, set the scene and embed the researcher in the clinical environment. All interviews were recorded and transcribed verbatim. Data was analysed using a thematic framework analysis developed through the literature and further through the analysis process.
Results: The three strands of work coalesce to provide a picture of the experiences of people undergoing their HNC journey through diagnosis, treatment and rehabilitation. This study identified some key themes including, the traumatic elements of treatment such as radiotherapy and dental extraction, the importance of effective information giving, the impact of loss of function on the whole self and a better understanding of how individuals manage rehabilitation. The study also captures the pivotal role that networks play in facilitating a better experience of HNC. Participants highlighted that families, partners and friends are key to supporting rehabilitation. Participants further highlighted that the CHANT community-based, multidisciplinary approach is an exemplar of how to provide personalised, tailored care for this cohort of patients.
What this research shows in policy terms is that HNC is a particular type of condition that is ideally suited to being treated at a local community level within a model of integrated care.
At an individual level, however, it is a catastrophic diagnosis which turns people’s lives upside down and for some people, once they have gone through the treatment and rehabilitation, they are never going to be quite the same as they were when they started. This is demonstrated in observations where the reality of the environment and interactions that patients are involved in can be seen and through the individual stories that came out of the
interviews.
Conclusion: More research needs to be conducted to better understand the long-term needs of patients with HNC as there is currently little qualitative research into the patient perspective. This study provides a new insight into the narrative of the patient journey for those with a diagnosis of HNC. This study is important because it provides a voice for a group of patients, which is not captured holistically in the existing literature. Through a document analysis it is apparent that the national and regional ambitions can be effectively implemented into a community-based service, however this is not replicated across the country. This piece of research affects policy and the way we go forward with service design for this group of patients and others who may have parallels as it highlights the efficacy and success of providing a cancer rehabilitation service structured in this way. This is important because it enables us to gain insight into the sheer mess, noise, urgency and confusion of the process on an individual and provides a uniquely contextualised account of the biological, social, political and psychological impacts when providing care for this group of patients.
| Date of Award | 1 Oct 2023 |
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| Original language | English |
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| Supervisor | Sasha Scambler (Supervisor) & Koula Asimakopoulou (Supervisor) |