Developing a Model of Post-Stroke Body Image Perception, V1.0
Research type
Research Study
Full title
Developing a Model of Post-Stroke Body Image Perception
IRAS ID
280678
Contact name
C Elizabeth Lightbody
Contact email
Sponsor organisation
University of Central Lancashire
Duration of Study in the UK
1 years, 2 months, 28 days
Research summary
Research Summary
Body image perceptions are how people think and feel about their body. This PhD project will explore these perceptions in adult stroke survivors. Around 100,000 people have a stroke in the UK each year. Stroke is sudden, unexpected and can leave people with cognitive and physical changes which can alter their body image perception. This can affect their quality of life, self-esteem and has been linked to depressive feelings.
To explore body image perceptions in stroke survivors, this project will use 3 stages: a systematic review, interviews, and focus groups. The systematic review will help us to understand existing research into post-stroke body image perception, frequency of negative perceptions, impacts of these perceptions, and methods of evaluation. Then, we will explore personal experiences of body image perception after stroke through one-to-one interviews with stroke survivors. This will allow us to create a model, or summary, of body image experiences and issues following stroke. It will describe body image perception in a clear, succinct, and visual way to aid communication and to allow methods of assessment and measurement to be developed in the future. Finally, we will invite stroke survivors and relatives and/or close friends, and NHS staff, to a focus group. Here, we will explore their opinions of the model and of different methods of measuring body image perception post-stroke.
We estimate that the study will last around 2 years. COVID-19 restrictions have been considered throughout. Project outcomes will be a literature review, a stroke-specific model of body image perception and identification of preferred ways of exploring and measuring body image perceptions post-stroke. Stroke survivor input and feedback throughout will ensure that results are applicable to real-world scenarios.Summary of Results
Aims of the research:
The aim was to build the evidence base and help us to better understand post-stroke body image experiences. If these experiences impacted wellbeing and recovery, the aim would also be to recommend how body image could be assessed and supported post-stroke.How will patients, carers and members of the public and services benefit from my research- either directly or in the longer term?
My research has provided the first building blocks of the evidence base to show that body image experience can have a long-term and wide-ranging impact on wellbeing after a stroke. This means that in the future and after more research has been done, body image experiences might need to be added to stroke rehabilitation guidelines. This is important as the need for thorough and long-term and stroke rehabilitation is recognised around the world.Background to the research:
Stroke is a global problem. More people are having strokes, but more people are also surviving them. This means it is important to understand how to support people’s recovery after stroke. When someone has a stroke, it can cause bodily changes. This may alter their body image experience. However, what this experience is like for people after stroke, how it impacts wellbeing and recovery, and the size and importance of these impacts are not fully understood. We need to understand this to identify whether we need to provide support for body image experience after stroke.Design and methods used:
I carried out three studies. Firstly, I completed a review of existing research papers using systematic methods (a systematic review) to begin to build the evidence base. I identified 61 relevant papers. I analysed the results and found that people tend to experience a changed body image post-stroke, which can impact their everyday lives. Different ways of assessing body image within these studies were not tested with people who have had a stroke. This means we can’t be sure if they measure what they are supposed to measure.Next, I interviewed 22 people with stroke who I recruited from local hospitals. They had experienced a stroke around 6 months before I spoke to them. I grouped the findings into categories:
1. Responses to a new body image experience
a. Continuation in opinions on how important body image is
b. Societal pressures to be ‘normal’: wanting to portray ‘normal’ self even if they feel different
c. Evidence of adjustment to or acceptance to changed body image
d. It’s a positive experience when improvements are made towards being ‘normal’ or when body or body image is viewed as being back to ‘normal’
2. Body is now perceived as an obstacle to normality
a. Body is viewed as being untrustworthy; it is fallible and must now be accommodated for
b. Bodily changes affect desired or perceived self-presentation
c. Perceiving body image as being like that of an older person
The results confirmed the findings of the systematic review and helped our understanding by providing additional detail. A new finding from the interviews was that how important someone’s body image is to them seems to remain equally important before and after their stroke.
Also from the interviews, I developed a stroke-specific definition of body image to support patient, family, carer and clinician understanding. The brief version of the definition is that body image after stroke (as perceived by the participants in this study) appears to have three main parts. People hold internal thoughts about how they think that they look, move and function. This translates into a view of their body which they self-present to the outside world (external presentation). They then hold perceptions of how they think other people view them (what others think).I asked for feedback about the definition from clinicians, participants, and public advisors. They described it as being clear, relevant and comprehensive.
Finally, an expert panel of clinicians, who included stroke healthcare professionals and clinical psychologists, reviewed the way that I had interpreted my findings. They thought that the results were relevant to stroke care. They recommended different ways that could be used to help people with their body image after a stroke. They also looked at the different ways of assessing post-stroke body image that I had found through my research and thought that none were useful for people with stroke.
Patient and public involvement:
Two people who had experienced a stroke and a carer acted as patient, public and carer involvement (PCPI) advisers for my researchers. The two advisers with stroke provided feedback on the information sheets and consent forms that I used in my interview study, including aphasia-friendly versions. One of these advisers also took part in a pilot interview with me to help me to finalise my interview schedule. This helped me to make sure that my research materials were appropriate and acceptable for people with stroke.I sent a copy of the body image definition that I created from the interviews was to my PCPI members and participants to see if it made sense. They said that it was clear, relevant and comprehensive and suggested ways that it could be changed to make it even clearer. This feedback is important as it can be used to update the definition to make it accessible for different people, which will make it more helpful.
As part of my expert panel work, I asked the carer PCPI member for their thoughts about the shortlisted body image assessment methods. This helped me to understand how meaningful and relevant they could be for people with stroke.
One of the public advisors who I spoke to provided suggestions for how I could disseminate my work, including advertising in community spaces and making summaries available in different languages.
Dissemination:
In December 2022, I presented the results of the interviews at the UK stroke forum, which was attended by clinicians and academics. I will send out a lay summary to the people who took part in my interviews. I am also planning to submit research papers about my systematic review and interviews to peer-reviewed journals. In my thesis, I have also made recommendations for clinical practice and future research.REC name
Wales REC 4
REC reference
20/WA/0305
Date of REC Opinion
10 Nov 2020
REC opinion
Favourable Opinion