{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,5]],"date-time":"2026-11-05T22:56:38Z","timestamp":1793919398822,"version":"4.8.0"},"reference-count":47,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2022,11,3]],"date-time":"2022-11-03T00:00:00Z","timestamp":1667433600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Psychol."],"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Co-creation allows to develop tailored interventions in chronicity and to increase patients\u2019 engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>This 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\u201345) and healthcare professionals (HCPs) on the relevance, objectives, and modalities of a biopsychosocial intervention (named ESPRIMO) and on strategies\/barriers to participation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A participatory mixed-method approach in three consecutive steps was implemented: online surveys with YawMS (<jats:italic>n<\/jats:italic>\u2009=\u2009121) and HCPs (<jats:italic>n<\/jats:italic>\u2009=\u200943), 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\u2019s results.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>An 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The 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.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpsyg.2022.1042234","type":"journal-article","created":{"date-parts":[[2022,11,3]],"date-time":"2022-11-03T11:00:13Z","timestamp":1667473213000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":15,"title":["Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis"],"prefix":"10.3389","volume":"13","author":[{"given":"Valeria","family":"Donisi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silvia","family":"Poli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Angela","family":"Mazzi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Gobbin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Federico","family":"Schena","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lidia","family":"Del Piccolo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valeria","family":"Bigardi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alberto","family":"Gajofatto","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michela","family":"Rimondini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2022,11,3]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"287","DOI":"10.1016\/j.pec.2013.01.005","article-title":"What patients want","volume":"90","author":"Bensing","year":"2013","journal-title":"Patient Educ. Couns."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1126\/SCIADV.AAX0903","article-title":"Nature and mental health: an ecosystem service perspective","volume":"5","author":"Bratman","year":"2019","journal-title":"Sci. Adv."},{"key":"ref3","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1016\/j.socscimed.2018.01.015","article-title":"Judgment hurts: the psychological consequences of experiencing stigma in multiple sclerosis","volume":"208","author":"Cadden","year":"2018","journal-title":"Soc. Sci. Med."},{"key":"ref4","doi-asserted-by":"publisher","first-page":"481","DOI":"10.1177\/1558689818778469","article-title":"Intersection of mixed methods and community-based participatory research: a methodological review","volume":"13","author":"DeJonckheere","year":"2019","journal-title":"J. Mixed Methods Res."},{"key":"ref5","doi-asserted-by":"publisher","first-page":"215","DOI":"10.3389\/fpsyg.2021.598726","article-title":"A bio-psycho-social co-created intervention for Young adults with multiple sclerosis (ESPRIMO): rationale and study protocol for a feasibility study","volume":"12","author":"Donisi","year":"","journal-title":"Front. Psychol."},{"key":"ref6","doi-asserted-by":"publisher","first-page":"588275","DOI":"10.3389\/fpsyt.2020.588275","article-title":"Insights for fostering resilience in Young adults with multiple sclerosis in the aftermath of the COVID-19 emergency: an Italian survey","volume":"11","author":"Donisi","year":"","journal-title":"Front. Psych."},{"key":"ref7","doi-asserted-by":"publisher","first-page":"163","DOI":"10.1111\/1468-0009.12184","article-title":"Community-academic partnerships: a systematic review of the state of the literature and recommendations for future research","volume":"94","author":"Drahota","year":"2016","journal-title":"Milbank Q."},{"key":"ref8","doi-asserted-by":"publisher","first-page":"13237","DOI":"10.3390\/ijerph182413237","article-title":"Fatigue, physical disability and self-efficacy as predictors of the acceptance of illness and health-related quality of life in patients with multiple sclerosis","volume":"18","author":"Dymecka","year":"2021","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1080\/08924562.2015.1133353","article-title":"The Value of Fun in Physical Activity","volume":"29","author":"El-Sherif","year":"2016","journal-title":"Strat. J. Phys. Sport Educ."},{"key":"ref10","doi-asserted-by":"publisher","first-page":"38","DOI":"10.1186\/s13012-016-0399-1","article-title":"Integrated knowledge translation (IKT) in health care: a scoping review","volume":"11","author":"Gagliardi","year":"2015","journal-title":"Implement. Sci."},{"key":"ref11","doi-asserted-by":"publisher","first-page":"e030469","DOI":"10.1136\/bmjopen-2019-030469","article-title":"Biopsychosocial model of resilience in young adults with multiple sclerosis (BPS-ARMS): an observational study protocol exploring psychological reactions early after diagnosis","volume":"9","author":"Gajofatto","year":"2019","journal-title":"BMJ Open"},{"key":"ref12","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2020.00798","article-title":"Construction of a user-led resource for people transitioning to secondary progressive multiple sclerosis: results of an international nominal group study","volume":"11","author":"Giovannetti","year":"2020","journal-title":"Front. Neurol."},{"key":"ref13","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/09638288.2021.1960441","article-title":"Effectiveness of a group resilience intervention for people with multiple sclerosis delivered via frontline services","author":"Giovannetti","year":"2021","journal-title":"Disabil. Rehabil."},{"key":"ref14","volume-title":"Study of participatory research in health promotion (for Royal Society of Canada)","author":"Green","year":"1995"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"392","DOI":"10.1111\/1468-0009.12197","article-title":"Achieving research impact through co-creation in community-based health services: literature review and case study","volume":"94","author":"Greenhalgh","year":"2016","journal-title":"Milbank Q."},{"key":"ref16","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12961-020-0544-9","article-title":"A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature","volume":"18","author":"Hoekstra","year":"2020","journal-title":"Heal. Res. Policy Syst."},{"key":"ref17","doi-asserted-by":"publisher","first-page":"978","DOI":"10.1177\/0002764218772673","article-title":"Applying mixed methods in action research: methodological potentials and advantages","volume":"62","author":"Ivankova","year":"2018","journal-title":"Am. Behav. Sci."},{"key":"ref18","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1186\/s13012-017-0696-3","article-title":"Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge","volume":"12","author":"Jull","year":"2017","journal-title":"Implement. Sci."},{"key":"ref19","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD000963.PUB3","article-title":"Multidisciplinary biopsychosocial rehabilitation for chronic low back pain","volume":"2014","author":"Kamper","year":"2014","journal-title":"Cochrane Database Syst. Rev."},{"key":"ref20","doi-asserted-by":"publisher","first-page":"520","DOI":"10.1016\/S1474-4422(10)70064-8","article-title":"The changing demographic pattern of multiple sclerosis epidemiology","volume":"9","author":"Koch-Henriksen","year":"2010","journal-title":"Lancet Neurol."},{"key":"ref21","doi-asserted-by":"publisher","first-page":"216","DOI":"10.7150\/ijms.51172","article-title":"The levels of depression, anxiety, acceptance of illness, and medication adherence in patients with multiple sclerosis - descriptive and correlational study","volume":"18","author":"Ko\u0142tuniuk","year":"2021","journal-title":"Int. J. Med. Sci."},{"key":"ref22","doi-asserted-by":"publisher","first-page":"92","DOI":"10.1080\/21642850.2021.2016412","article-title":"A biopsychosocial intervention for stroke Carers (BISC): development and description of the intervention","volume":"10","author":"Kontou","year":"2022","journal-title":"Health Psychol. Behav. Med."},{"key":"ref23","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s40900-018-0136-9","article-title":"Principles and recommendations for the application and reporting of participatory methodologies in the development and evaluation of public health interventions","volume":"5","author":"Leask","year":"2019","journal-title":"Res. Involv. Engagem."},{"key":"ref24","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1136\/bmjopen-2018-026482","article-title":"In-DEPtH framework: evidence-in formed, co-creation framework for the D esign, e valuation and P rocuremen t of H ealth services","volume":"9","author":"Lo","year":"2019","journal-title":"BMJ Open"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"367","DOI":"10.1007\/S10802-013-9727-Y","article-title":"Does a booster intervention augment the preventive effects of an abbreviated version of the coping power program for aggressive children?","volume":"42","author":"Lochman","year":"2014","journal-title":"J. Abnorm. Child Psychol."},{"key":"ref26","doi-asserted-by":"publisher","first-page":"218","DOI":"10.3109\/09638288.2015.1035457","article-title":"A pilot study: examining the effects and tolerability of structured dance intervention for individuals with multiple sclerosis","volume":"38","author":"Mandelbaum","year":"2016","journal-title":"Disabil. Rehabil."},{"key":"ref27","doi-asserted-by":"publisher","first-page":"420","DOI":"10.1016\/J.PEC.2011.01.005","article-title":"A standardized approach to qualitative content analysis of focus group discussions from different countries","volume":"82","author":"Moretti","year":"2011","journal-title":"Patient Educ. Couns."},{"key":"ref28","doi-asserted-by":"publisher","first-page":"138","DOI":"10.1177\/1474904120947890","article-title":"Co-creation and regional adaptation of a resilience-based universal whole-school program in five European regions","volume":"21","author":"Morote","year":"2020","journal-title":"Eur. Educ. Res. J."},{"key":"ref29","doi-asserted-by":"publisher","first-page":"9","DOI":"10.1080\/13814788.2017.1375091","article-title":"Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis","volume":"24","author":"Moser","year":"2018","journal-title":"Eur. J. Gen. Pract."},{"key":"ref30","doi-asserted-by":"publisher","first-page":"1115","DOI":"10.1080\/09638288.2018.1516817","article-title":"Ballroom dance for persons with multiple sclerosis: A pilot feasibility study","volume":"42","author":"Ng","year":"2019","journal-title":"Disabil. Rehabil."},{"key":"ref31","doi-asserted-by":"publisher","first-page":"752","DOI":"10.1097\/WCO.0000000000000622","article-title":"Multiple sclerosis: clinical aspects","volume":"31","author":"Oh","year":"2018","journal-title":"Curr. Opin. Neurol."},{"key":"ref32","doi-asserted-by":"publisher","first-page":"100664","DOI":"10.1016\/j.cppeds.2019.100664","article-title":"Organizational strategies to reduce physician burnout and improve professional fulfillment","volume":"49","author":"Olson","year":"2019","journal-title":"Curr. Probl. Pediatr. Adolesc. Health Care"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1177\/160940690900800301","article-title":"A qualitative framework for collecting and analyzing data in focus group research","volume":"8","author":"Onwuegbuzie","year":"2009","journal-title":"Int. J. Qual. Methods"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"4156","DOI":"10.3390\/ijerph18084156","article-title":"\u201cIf you Can\u2019t control the wind, adjust your sail\u201d: tips for post-pandemic benefit finding from Young adults living with multiple sclerosis. A qualitative study","volume":"18","author":"Poli","year":"2021","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"ref35","doi-asserted-by":"publisher","first-page":"2047","DOI":"10.1111\/HEX.13348","article-title":"Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals","volume":"24","author":"Price","year":"2021","journal-title":"Health Expect."},{"key":"ref36","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3390\/IJERPH17051526","article-title":"Regular doses of nature: the efficacy of Green exercise interventions for mental wellbeing","volume":"17","author":"Rogerson","year":"2020","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1007\/S10465-010-9087-X\/TABLES\/1","article-title":"The use of dance in the rehabilitation of a patient with multiple sclerosis","volume":"32","author":"Salgado","year":"2010","journal-title":"Am. J. Danc. Ther."},{"key":"ref38","doi-asserted-by":"publisher","first-page":"380","DOI":"10.1037\/a0025977","article-title":"A systematic review of psychological interventions for adolescents and young adults living with chronic illness","volume":"31","author":"Sansom-Daly","year":"2012","journal-title":"Health Psychol."},{"key":"ref39","doi-asserted-by":"publisher","first-page":"e22287","DOI":"10.2196\/22287","article-title":"The COVID-19 pandemic: a pandemic of lockdown loneliness and the role of digital technology","volume":"22","author":"Shah","year":"2020","journal-title":"J. Med. Internet Res."},{"key":"ref40","doi-asserted-by":"publisher","first-page":"e033920","DOI":"10.1136\/BMJOPEN-2019-033920","article-title":"Effectiveness of a culturally adapted biopsychosocial intervention (POHON SIHAT) in improving self-efficacy in patients with diabetes attending primary healthcare clinics in Putrajaya, Malaysia: study protocol of a randomised controlled trial","volume":"10","author":"Suhaimi","year":"2020","journal-title":"BMJ Open"},{"key":"ref41","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3390\/IJERPH19063214","article-title":"Nature-based interventions for psychological wellbeing in long-term conditions: a systematic review","volume":"19","author":"Taylor","year":"2022","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"102256","DOI":"10.1016\/j.msard.2020.102256","article-title":"Effects of a 10-week multimodal dance and art intervention program leading to a public performance in persons with multiple sclerosis - a controlled pilot-trial","volume":"44","author":"Van Geel","year":"2020","journal-title":"Mult. Scler. Relat. Disord."},{"key":"ref43","doi-asserted-by":"publisher","first-page":"e0181689","DOI":"10.1371\/journal.pone.0181689","article-title":"(I Can\u2019t get no) saturation: a simulation and guidelines for sample sizes in qualitative research","volume":"26","author":"van Rijnsoever","year":"2017","journal-title":"PLoS One"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"995","DOI":"10.1177\/0269215517709890","article-title":"The biopsychosocial model of illness: a model whose time has come","volume":"31","author":"Wade","year":"2017","journal-title":"Clin. Rehabil."},{"key":"ref45","doi-asserted-by":"publisher","first-page":"153","DOI":"10.1207\/S15327841MPEE0503_3","article-title":"Conceptualization and development of the sources of enjoyment in youth sport questionnaire","volume":"5","author":"Wiersma","year":"2001","journal-title":"Meas. Phys. Educ. Exerc. Sci."},{"key":"ref46","doi-asserted-by":"publisher","first-page":"55","DOI":"10.1016\/j.jad.2020.08.001","article-title":"Impact of COVID-19 pandemic on mental health in the general population: a systematic review","volume":"277","author":"Xiong","year":"2020","journal-title":"J. Affect. Disord."},{"key":"ref47","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1016\/J.PHYSIO.2019.06.001","article-title":"Experiences of venue based exercise interventions for people with stroke in the UK: a systematic review and thematic synthesis of qualitative research","volume":"110","author":"Young","year":"2021","journal-title":"Physiotherapy"}],"container-title":["Frontiers in Psychology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2022.1042234\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,11,3]],"date-time":"2022-11-03T11:00:16Z","timestamp":1667473216000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2022.1042234\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,11,3]]},"references-count":47,"alternative-id":["10.3389\/fpsyg.2022.1042234"],"URL":"https:\/\/doi.org\/10.3389\/fpsyg.2022.1042234","relation":{},"ISSN":["1664-1078"],"issn-type":[{"value":"1664-1078","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,11,3]]},"article-number":"1042234"}}