Young People's Experiences of Living with Chronic Pain and its Impact on Social Connectedness with Peers
Lead Research Organisation:
University of Leeds
Department Name: Sociology & Social Policy
Abstract
Aim: To explore and describe young peoples' experiences of living with chronic pain and its impact on social connectedness with peers.
Design and methods: Participants are eligible if aged between 11-18 years, able to speak and understand English, and diagnosed with chronic pain. Participants will be recruited via the chronic pain clinic of Leeds Children's Hospital. I will go into clinic and speak directly to young people, but if this is not possible, clinicians have offered assistance with recruiting participants.
Work package 1 (WP1): WP1 is a mixed-methods systematic review answering the question: What do young people aged 11-18 say about the impact of chronic pain on their social connectedness with peers. Results will be filtered via inclusion and exclusion criteria based on my participant demographics. I will carry out a meta-statistical analysis of quantitative results and thematic analysis of qualitative results, combining the findings to inform the following work packages. The results of the mixed-methods systematic review will give a sense of the topic within contemporary literature and what young people have already voiced in research. This will inform the other work packages by establishing existing themes and statistics relevant to both my qualitative project and survey.
Work package 2 (WP2): WP2 consists of qualitative interviews to explore young people's experiences of social connectedness with peers. Interviews will be online or in person. Participants will be asked to provide images which they feel represent their experiences of chronic pain and social life with peers. They can be provided with optional prompts to assist with this task. They will be invited to describe and group these images. This method is based on the success of photo-elicitation and image sorting in health research. Interviews will be recorded, transcribed and anonymised. Interpretative Phenomenological Analysis will be carried out on these transcripts.
Work package 3 (WP3): WP3 will consist of a mixed-methods survey to understand how a larger sample of young people experience chronic pain and social connectedness with peers. PPIE members will be involved in the design of the survey by influencing what should be asked and how. They will review and complete the survey themselves before distribution. Clinicians from the chronic pain clinic confirmed they would be happy to distribute the survey, and would find the results valuable. The survey will produce a combination of quantitative and qualitative data which can be taken back to the main themes from WP2 and compared in order to give a holistic understanding of both detailed experiences and significant factors of social connectedness in school for participants. PPIE: Potential collaborators have been identified and involved from the early stages of the project design, and will be involved throughout. This includes clinicians from the Leeds Children's Hospital chronic pain services and a young person with chronic pain who will act as PPIE advisor. The PPIE advisor has read the proposal and had input in the design of the work packages, as well as highlighting what outcomes may be most beneficial. A PPIE panel will be established and will influence various stages of the project, including designing the qualitative focus groups, carrying out participatory analysis, designing the survey, assisting in analysis and reviewing the results. Outcomes: I will produce a set of recommendations based on the results of all three work packages. These can be provided to teachers and clinicians to facilitate ways of understanding and improving social connectedness for young people with chronic pain. By establishing the challenges and significant elements of social connectedness for young people with chronic pain, results from the project will form the starting point for an intervention or support package that can be used in schools with a view to producing applicable means of improving social connectedness
Design and methods: Participants are eligible if aged between 11-18 years, able to speak and understand English, and diagnosed with chronic pain. Participants will be recruited via the chronic pain clinic of Leeds Children's Hospital. I will go into clinic and speak directly to young people, but if this is not possible, clinicians have offered assistance with recruiting participants.
Work package 1 (WP1): WP1 is a mixed-methods systematic review answering the question: What do young people aged 11-18 say about the impact of chronic pain on their social connectedness with peers. Results will be filtered via inclusion and exclusion criteria based on my participant demographics. I will carry out a meta-statistical analysis of quantitative results and thematic analysis of qualitative results, combining the findings to inform the following work packages. The results of the mixed-methods systematic review will give a sense of the topic within contemporary literature and what young people have already voiced in research. This will inform the other work packages by establishing existing themes and statistics relevant to both my qualitative project and survey.
Work package 2 (WP2): WP2 consists of qualitative interviews to explore young people's experiences of social connectedness with peers. Interviews will be online or in person. Participants will be asked to provide images which they feel represent their experiences of chronic pain and social life with peers. They can be provided with optional prompts to assist with this task. They will be invited to describe and group these images. This method is based on the success of photo-elicitation and image sorting in health research. Interviews will be recorded, transcribed and anonymised. Interpretative Phenomenological Analysis will be carried out on these transcripts.
Work package 3 (WP3): WP3 will consist of a mixed-methods survey to understand how a larger sample of young people experience chronic pain and social connectedness with peers. PPIE members will be involved in the design of the survey by influencing what should be asked and how. They will review and complete the survey themselves before distribution. Clinicians from the chronic pain clinic confirmed they would be happy to distribute the survey, and would find the results valuable. The survey will produce a combination of quantitative and qualitative data which can be taken back to the main themes from WP2 and compared in order to give a holistic understanding of both detailed experiences and significant factors of social connectedness in school for participants. PPIE: Potential collaborators have been identified and involved from the early stages of the project design, and will be involved throughout. This includes clinicians from the Leeds Children's Hospital chronic pain services and a young person with chronic pain who will act as PPIE advisor. The PPIE advisor has read the proposal and had input in the design of the work packages, as well as highlighting what outcomes may be most beneficial. A PPIE panel will be established and will influence various stages of the project, including designing the qualitative focus groups, carrying out participatory analysis, designing the survey, assisting in analysis and reviewing the results. Outcomes: I will produce a set of recommendations based on the results of all three work packages. These can be provided to teachers and clinicians to facilitate ways of understanding and improving social connectedness for young people with chronic pain. By establishing the challenges and significant elements of social connectedness for young people with chronic pain, results from the project will form the starting point for an intervention or support package that can be used in schools with a view to producing applicable means of improving social connectedness
Organisations
People |
ORCID iD |
| Bethan Spencer (Student) |
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000746/1 | 01/10/2017 | 30/09/2027 | |||
| 2885897 | Studentship | ES/P000746/1 | 01/10/2023 | 30/09/2027 | Bethan Spencer |