Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia
Abstract Background The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over‐reliance on family members as proxies and lack of representation of seldom‐heard group...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-10-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13332 |
| _version_ | 1818662820097556480 |
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| author | Andrea Capstick Alison Dennison Jan Oyebode Lesley Healy Claire Surr Sahdia Parveen Cara Sass Michelle Drury |
| author_facet | Andrea Capstick Alison Dennison Jan Oyebode Lesley Healy Claire Surr Sahdia Parveen Cara Sass Michelle Drury |
| author_sort | Andrea Capstick |
| collection | DOAJ |
| description | Abstract Background The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over‐reliance on family members as proxies and lack of representation of seldom‐heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. Objective This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Participants Nine people living with dementia and five family members participated in this study. Results Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. Patient or Public Contribution People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript. |
| first_indexed | 2024-12-17T05:07:01Z |
| format | Article |
| id | doaj.art-b9129bb86e144945872525a7e214653e |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-12-17T05:07:01Z |
| publishDate | 2021-10-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-b9129bb86e144945872525a7e214653e2022-12-21T22:02:23ZengWileyHealth Expectations1369-65131369-76252021-10-012451890190010.1111/hex.13332Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementiaAndrea Capstick0Alison Dennison1Jan Oyebode2Lesley Healy3Claire Surr4Sahdia Parveen5Cara Sass6Michelle Drury7Centre for Applied Dementia Studies University of Bradford Bradford UKCentre for Applied Dementia Studies University of Bradford Bradford UKCentre for Applied Dementia Studies University of Bradford Bradford UKCentre for Applied Dementia Studies, Patient and Public Involvement Group University of Bradford Bradford UKCentre for Dementia Research Leeds Becket University Leeds UKCentre for Applied Dementia Studies University of Bradford Bradford UKCentre for Dementia Research Leeds Becket University Leeds UKCentre for Applied Dementia Studies University of Bradford Bradford UKAbstract Background The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over‐reliance on family members as proxies and lack of representation of seldom‐heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. Objective This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Participants Nine people living with dementia and five family members participated in this study. Results Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. Patient or Public Contribution People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.https://doi.org/10.1111/hex.13332cocreationdementiagraphic artnarrativeseldom‐heard groupsvignettes |
| spellingShingle | Andrea Capstick Alison Dennison Jan Oyebode Lesley Healy Claire Surr Sahdia Parveen Cara Sass Michelle Drury Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia Health Expectations cocreation dementia graphic art narrative seldom‐heard groups vignettes |
| title | Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| title_full | Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| title_fullStr | Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| title_full_unstemmed | Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| title_short | Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| title_sort | drawn from life cocreating narrative and graphic vignettes of lived experience with people affected by dementia |
| topic | cocreation dementia graphic art narrative seldom‐heard groups vignettes |
| url | https://doi.org/10.1111/hex.13332 |
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