Abstract/Summary

Background: Achalasia is a rare, chronic condition that affects the motility of the oesophagus and significantly impacts the lives of people affected. Recognising the importance of understanding the lived experience, this thesis sets out to identify the challenges faced by people living with achalasia and collaboratively develop a potential solution for improved long-term management. Methods: The thesis utilised a mixed-method approach across three distinct studies, incorporating process mapping, intervention co-design, and a feasibility study. The first study collected qualitative data from process mapping sessions, detailing the experiences and challenges faced by people living with achalasia and identifying key areas for support. The second study focussed on the primary challenge prioritised by participants. A series of online focus groups were conducted to provide a comprehensive analysis of this challenge, facilitating collaborative discussions around potential intervention strategies. Building on the insights gathered from these focus group discussions, an intervention was co-designed to meet the identified need. The thesis concludes with a mixed-method feasibility assessment, utilising questionnaires and semi-structured interviews to measure the acceptability, usability, and potential efficacy of the proposed intervention. Results: In addition to the clear physical problems, achalasia also brings about hidden social challenges that people living with achalasia face in their everyday lives. In study 1, a process map was developed to detail the lived experiences of people living with achalasia from diagnosis to long-term management. One of the predominant challenges consistently identified was issues related to eating behaviour, evident at every stage of their journey with achalasia. Informed by these insights, participants in study 2 specifically identified "eating in social settings" as a target behaviour for intervention. Using the COM-B model as a framework, the behaviour change intervention was co-designed, and an evidence-based workbook was developed. Testing the feasibility and practicality of this workbook, implemented in a real-world setting, was the focus of study 3. This feasibility study provided insight into participant recruitment and retention. Positive feedback on the workbook's usability was a key finding, along with the potential effectiveness in supporting people living with achalasia. Participants reported that the significant strength of the workbook was its content alignment with their unique experiences and challenges. Conclusion: In conclusion, this thesis has illuminated the intricacies of living with achalasia, offering insights into the experiences of individuals facing this rare condition. Through a patient-centric approach and by co-designing an intervention specifically targeting the challenge of social eating, this thesis demonstrates the principles of patient-centred care. The feasibility study indicated the intervention's ©University of Reading 2024 Page 6 potential effectiveness. The application of these findings lies in the real-world impact of the co-designed intervention, which has the potential to significantly improve the lives of those living with achalasia by addressing a critical aspect of their daily challenges including social eating. Subsequent research should focus on assessing the sustained efficacy of this intervention and advocate for the continued inclusion of patient perspectives in shaping more comprehensive and impactful solutions for individuals living with rare chronic conditions like achalasia.