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Title: Enhancing the post-stroke patient experience at mealtime through participatory design : eliciting, connecting and supporting multi-voicedness
Author: Neves, Sandra
ISNI:       0000 0004 5363 3127
Awarding Body: University of Glasgow
Current Institution: Glasgow School of Art
Date of Award: 2014
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Abstract:
Context/issue: Stroke is the major cause of disability in both Scotland and Portugal. It is estimated that each year stroke affects 15,000 people in Scotland and approximately 21,000 in Portugal, and possibly one-third of these individuals require rehabilitation. Research (Ekberg et al., 2002; Wright et al., 2005) has identified that the quality of the mealtime experience for patients affected by stroke in rehabilitation is poor, which may be demotivating and a factor in influencing recovery. Questions and previous studies: Is there an opportunity for design methods and approaches to help understand and improve the patient mealtime experience and if so, how? In previous studies, Cottam and Leadbeater (2004), Murray et al. (2006) and Boyle and Harris (2009) suggest that the integration of multi-stakeholders’ participation into the design process can be valuable. Bate and Robert (2007) suggest directly taking account of patients’ and healthcare professionals’ experiences – “the real virtuosos of the experience” (Sanders, 2001) – as the basis for designing service improvements and, consequently, better experiences. So, can design approaches help elicit patients’ and healthcare professionals’ “voices” and can these voices be used to help enhance the quality of the mealtime experience for patients undergoing stroke rehabilitation and if so, how? Methodology: This thesis adopts a participatory design (PD) approach to play a role in engaging and structuring the direct participation of patients and healthcare professionals in research. This method encompasses socialised and materialised situations in time and space with a focus on understanding the reasons behind current experiences while also exploring desirable futures. The analysis is based on translating and interpreting those patients’ and healthcare professionals’ voices, using the principles of framework analysis. Subjects, methods and activities: This pilot study included 11 participants comprising 6 healthcare professionals: a nurse, speech therapist, occupational therapist and dietician; and 5 patients who had a clinical diagnosis of stroke and eating difficulties. This research employed the following data collection techniques within a participatory design (PD) framework: i) integrating 4 interviews with observations, ii) 5 interviews combining a tool (storyboard) and a technique (nurse verbalising), and iii) 2 workshops acting as games. This chosen study design facilitated the aligning of different design situations where patients and healthcare professionals were temporarily engaged in discussing the present experiences, and, subsequently, in two different groups, suggesting ideas for future experiences. In this research study, PD methods were adapted to permit patients to participate, so that tools and techniques become connected, flexible and adapted to better accommodate their individual needs. Findings: This study found that socio-cultural differences highlight different perspectives: what patients imagined as desirable experiences differed from the views of the healthcare professionals. The study found that the current mealtime experience largely reflects a pre-occupation within functional rehabilitation issues, such as swallowing, but both patients and healthcare professionals highlight issues of subjective well-being which were not well-catered for. However, both patients and healthcare professionals emphasised complementary concerns about the mealtime, such as: experiencing positive socialisation; sensorial stimulation in ways that evoke well-being; and environmental factors designed to accommodate individual needs. The “What if” situations allowed patients and healthcare professionals to imagine a desirable design of the mealtime experience. These findings highlight the reconsidering the idea of the mealtime as one which offers a desirable and temporary break from the clinical “mechanistic” routine to create an opportunity to celebrate life and influence the patients’ emotional state in positive ways. Discussion In this study, eliciting multi-voicedness through a process of inquiry by engaging patients and healthcare professionals has brought forth new insights and issues. The method enabled the building of scenarios, not only to translate both the patients’ and healthcare professionals’ voices into visual narratives of both what happens presently and their desirable future experiences. This process made information-sharing between different individuals and the two groups possible. Originality of contribution, implications of findings and future work This is the first study to consider the voices of the patients and healthcare professionals in the mealtime experience for people affected by stroke. Here, some of the participants involved were at the extreme end of their ability to participate due to being fatigued by their condition. The work has shown how methods derived from PD can still be applied in these conditions but they must be adapted and evaluated in ways that do not cause tiredness for patients. The combination of methods has opened up new possibilities for patients, those affected by stroke, and their therapists, to actively engage and participate with their own experiences and ideas. By eliciting these voices, this research study has made a contribution to knowledge by obtaining an understanding of the patient experience at the mealtime. While PD methods have helped to evaluate the way the International Classification of Functioning (ICF) model is currently being applied in this context and have helped to show what issues are not being addressed, this study has further developed and tested new PD approaches and methods in this setting and has provided insights on the modifications required and their implications for participants. The adoption of a PD approach revealed a novel and valuable way to highlight the pre-occupation with functional restoration in rehabilitation and revealed the absence of certain aspects of the ICF model from practice that are important to patients, such as attention to subjective well-being. In this way, this study has revealed how employing a PD approach can potentially improve the delivery of the ICF model. The approach and techniques used here may be appropriate to be employed in other healthcare settings. This study will therefore be of interest across healthcare communities looking for new and useful ways of improving the patient experience.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.646781  DOI: Not available
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