Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis
BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial.AimsThis paper aims to presen...
| Main Authors: | , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-11-01
|
| Series: | Frontiers in Psychology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyg.2022.1042234/full |
| _version_ | 1798045774752251904 |
|---|---|
| author | Valeria Donisi Silvia Poli Maria Angela Mazzi Francesca Gobbin Federico Schena Lidia Del Piccolo Valeria Bigardi Alberto Gajofatto Michela Rimondini |
| author_facet | Valeria Donisi Silvia Poli Maria Angela Mazzi Francesca Gobbin Federico Schena Lidia Del Piccolo Valeria Bigardi Alberto Gajofatto Michela Rimondini |
| author_sort | Valeria Donisi |
| collection | DOAJ |
| description | BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial.AimsThis paper aims to present (i) an example of a co-creation process in the context of chronic diseases (ii) preferences and perspectives of young adults with multiple sclerosis (YawMS; aged 18–45) and healthcare professionals (HCPs) on the relevance, objectives, and modalities of a biopsychosocial intervention (named ESPRIMO) and on strategies/barriers to participation.MethodsA participatory mixed-method approach in three consecutive steps was implemented: online surveys with YawMS (n = 121) and HCPs (n = 43), online focus groups (FGs) with YawMS, consultation with an advisory board (AB) composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction (recognized as already limited during the COVID-19 pandemic). Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability. |
| first_indexed | 2024-04-11T23:26:32Z |
| format | Article |
| id | doaj.art-6c349b07f1694484ac6db79c32fc51d7 |
| institution | Directory Open Access Journal |
| issn | 1664-1078 |
| language | English |
| last_indexed | 2024-04-11T23:26:32Z |
| publishDate | 2022-11-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychology |
| spelling | doaj.art-6c349b07f1694484ac6db79c32fc51d72022-12-22T03:57:17ZengFrontiers Media S.A.Frontiers in Psychology1664-10782022-11-011310.3389/fpsyg.2022.10422341042234Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosisValeria Donisi0Silvia Poli1Maria Angela Mazzi2Francesca Gobbin3Federico Schena4Lidia Del Piccolo5Valeria BigardiAlberto Gajofatto6Michela Rimondini7Section of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Neurology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Movement Science, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Neurology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalySection of Clinical Psychology, Department of Neuroscience, Biomedicine and Movement Science, University of Verona, Verona, ItalyBackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial.AimsThis paper aims to present (i) an example of a co-creation process in the context of chronic diseases (ii) preferences and perspectives of young adults with multiple sclerosis (YawMS; aged 18–45) and healthcare professionals (HCPs) on the relevance, objectives, and modalities of a biopsychosocial intervention (named ESPRIMO) and on strategies/barriers to participation.MethodsA participatory mixed-method approach in three consecutive steps was implemented: online surveys with YawMS (n = 121) and HCPs (n = 43), online focus groups (FGs) with YawMS, consultation with an advisory board (AB) composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction (recognized as already limited during the COVID-19 pandemic). Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability.https://www.frontiersin.org/articles/10.3389/fpsyg.2022.1042234/fullclinical psychology and healthmultiple sclerosisco-creationhealth related quality of lifeparticipatory researchbiopsychosocial (BPS) model |
| spellingShingle | Valeria Donisi Silvia Poli Maria Angela Mazzi Francesca Gobbin Federico Schena Lidia Del Piccolo Valeria Bigardi Alberto Gajofatto Michela Rimondini Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis Frontiers in Psychology clinical psychology and health multiple sclerosis co-creation health related quality of life participatory research biopsychosocial (BPS) model |
| title | Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis |
| title_full | Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis |
| title_fullStr | Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis |
| title_full_unstemmed | Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis |
| title_short | Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis |
| title_sort | promoting participatory research in chronicity the esprimo biopsychosocial intervention for young adults with multiple sclerosis |
| topic | clinical psychology and health multiple sclerosis co-creation health related quality of life participatory research biopsychosocial (BPS) model |
| url | https://www.frontiersin.org/articles/10.3389/fpsyg.2022.1042234/full |
| work_keys_str_mv | AT valeriadonisi promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT silviapoli promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT mariaangelamazzi promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT francescagobbin promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT federicoschena promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT lidiadelpiccolo promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT valeriabigardi promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT albertogajofatto promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis AT michelarimondini promotingparticipatoryresearchinchronicitytheesprimobiopsychosocialinterventionforyoungadultswithmultiplesclerosis |