Cargando…
Participatory design of an infographic to help support the care of people living with complex regional pain syndrome
BACKGROUND: Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual’s presentation. People with lived experi...
Autores principales: | , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10642498/ https://www.ncbi.nlm.nih.gov/pubmed/37969133 http://dx.doi.org/10.1177/20494637231190587 |
_version_ | 1785146981137514496 |
---|---|
author | Beales, Darren Ho, Yi Ki Lewin, James Loh, Bianca Wen-Qi Yusof, Amirah Binte Grieve, Sharon Ranelli, Sonia Holthouse, David Mitchell, Tim Slater, Helen |
author_facet | Beales, Darren Ho, Yi Ki Lewin, James Loh, Bianca Wen-Qi Yusof, Amirah Binte Grieve, Sharon Ranelli, Sonia Holthouse, David Mitchell, Tim Slater, Helen |
author_sort | Beales, Darren |
collection | PubMed |
description | BACKGROUND: Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual’s presentation. People with lived experience express difficulty in accessing reliable and meaningful information about the condition. This study aimed to co-create a trustworthy infographic to share information about the lived experience of CRPS. METHODS: We adopted a seven-phase, iterative, participatory methodology to co-create the infographic. Potential infographic content was obtained from qualitative work investigating the lived experience of CRPS. Online consumer engagement (people with doctor diagnosed CRPS/their family, n=20) was used to prioritise content to be included in the infographic and then potential designs were sourced. The research team narrowed the selections down to two designs which were presented to consumers online for final selection (n=25) and refinement (n=34). RESULTS: An infographic for understanding the lived experience of CRPS was completed using participatory design, providing a resource aligned to the needs of people with this condition. Using the Patient Education Materials Assessment Tool, the final infographic rated highly for understandability (92%) and participants indicated significant willingness to share this infographic with others (93%). CONCLUSION: A process of participatory design was an effective and efficient process for translation of evidence gathered from qualitative research into a trustworthy resource for people with CRPS and their support people. |
format | Online Article Text |
id | pubmed-10642498 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-106424982023-11-15 Participatory design of an infographic to help support the care of people living with complex regional pain syndrome Beales, Darren Ho, Yi Ki Lewin, James Loh, Bianca Wen-Qi Yusof, Amirah Binte Grieve, Sharon Ranelli, Sonia Holthouse, David Mitchell, Tim Slater, Helen Br J Pain Articles BACKGROUND: Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual’s presentation. People with lived experience express difficulty in accessing reliable and meaningful information about the condition. This study aimed to co-create a trustworthy infographic to share information about the lived experience of CRPS. METHODS: We adopted a seven-phase, iterative, participatory methodology to co-create the infographic. Potential infographic content was obtained from qualitative work investigating the lived experience of CRPS. Online consumer engagement (people with doctor diagnosed CRPS/their family, n=20) was used to prioritise content to be included in the infographic and then potential designs were sourced. The research team narrowed the selections down to two designs which were presented to consumers online for final selection (n=25) and refinement (n=34). RESULTS: An infographic for understanding the lived experience of CRPS was completed using participatory design, providing a resource aligned to the needs of people with this condition. Using the Patient Education Materials Assessment Tool, the final infographic rated highly for understandability (92%) and participants indicated significant willingness to share this infographic with others (93%). CONCLUSION: A process of participatory design was an effective and efficient process for translation of evidence gathered from qualitative research into a trustworthy resource for people with CRPS and their support people. SAGE Publications 2023-07-28 2023-12 /pmc/articles/PMC10642498/ /pubmed/37969133 http://dx.doi.org/10.1177/20494637231190587 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Articles Beales, Darren Ho, Yi Ki Lewin, James Loh, Bianca Wen-Qi Yusof, Amirah Binte Grieve, Sharon Ranelli, Sonia Holthouse, David Mitchell, Tim Slater, Helen Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title | Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title_full | Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title_fullStr | Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title_full_unstemmed | Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title_short | Participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
title_sort | participatory design of an infographic to help support the care of people living with complex regional pain syndrome |
topic | Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10642498/ https://www.ncbi.nlm.nih.gov/pubmed/37969133 http://dx.doi.org/10.1177/20494637231190587 |
work_keys_str_mv | AT bealesdarren participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT hoyiki participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT lewinjames participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT lohbiancawenqi participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT yusofamirahbinte participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT grievesharon participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT ranellisonia participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT holthousedavid participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT mitchelltim participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome AT slaterhelen participatorydesignofaninfographictohelpsupportthecareofpeoplelivingwithcomplexregionalpainsyndrome |