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Femke van Schelven,1 Eline van der Meulen,2 Elise Wessels,2,3 Hennie R Boeije1 1Department Perspective of Patients and Clients in Healthcare, Netherlands Institute for Health Services Research, Utrecht, the Netherlands; 2JongPIT, Amsterdam, the Netherlands; 3Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, Amsterdam, the NetherlandsCorrespondence: Femke van Schelven, Netherlands Institute for Health Services Research, Otterstraat 118, Utrecht, 3513, CR, the Netherlands, Email f.vanschelven@nivel.nlPurpose: Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people’s experiences with treatment burden and their coping strategies.Patients and Methods: The body mapping method was employed, in which a life-sized outline of someone’s body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers.Results: The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist.Conclusion: Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.Keywords: chronic disease, adolescence, self-management, treatment adherence, body mapping, visual methods

Samenvatting Inleiding Het meten van patiëntervaringen geeft belangrijke inzichten in de kwaliteit van de Nederlandse gezondheidszorg. Het huidige onderzoek toetst in hoeverre de ervaren kwaliteit van zorg door de jaren heen is veranderd en hoe deze samenhangt met veranderingen in zorg en gezondheid tijdens de coronapandemie. Methode Patiëntervaringen zijn verzameld met tevredenheidsoordelen en de kwaliteitsindicator PREM Chronische Zorg, onder een representatieve steekproef van mensen met een chronische ziekte. Trendanalyses (2016–2020) zijn uitgevoerd en verschillen tussen subgroepen zijn getoetst met Mann-Whitney U‑toetsen. Resultaten De kwaliteit van de zorg wordt over het algemeen positief ervaren, ook tijdens de coronapandemie in het najaar van 2020. In dat jaar zijn mensen het minst tevreden over de afstemming tussen zorgverleners en over de preventieve begeleiding van hun ziekte (respectievelijk 64% en 67% is (helemaal) tevreden). Trendanalyses laten zien dat de tevredenheid over preventieve begeleiding is gedaald en dat de tevredenheid over gezamenlijke besluitvorming door de jaren heen schommelt. Mensen die gevolgen van de coronapandemie ervaren voor hun zorg of gezondheid beoordelen aspecten van de gezondheidszorg minder positief dan diegenen die geen gevolgen ervaren. Conclusie Het is belangrijk om aandacht te hebben voor patiëntervaringen met zorgprocessen, waarbij extra nadruk zou moeten liggen op informatie over preventie, ondersteuning bij veranderingen in de gezondheid en de behandeling tijdens de coronapandemie, en goede afstemming tussen zorgverleners.

Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands.Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021.Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action.The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.

Background Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. Methods Data were collected from projects funded by a 4-year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co-deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self-perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. Results The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self-perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. Conclusions This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.

Background The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so‐called ‘Patient and Public Involvement’ (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact. Methods We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction. Results Twenty‐three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. Discussion and conclusion Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.

Samenvatting Inleiding Het meten van patiëntervaringen geeft belangrijke inzichten in de kwaliteit van de Nederlandse gezondheidszorg. Het huidige onderzoek toetst in hoeverre de ervaren kwaliteit van zorg door de jaren heen is veranderd en hoe deze samenhangt met veranderingen in zorg en gezondheid tijdens de coronapandemie. Methode Patiëntervaringen zijn verzameld met tevredenheidsoordelen en de kwaliteitsindicator PREM Chronische Zorg, onder een representatieve steekproef van mensen met een chronische ziekte. Trendanalyses (2016–2020) zijn uitgevoerd en verschillen tussen subgroepen zijn getoetst met Mann-Whitney U‑toetsen. Resultaten De kwaliteit van de zorg wordt over het algemeen positief ervaren, ook tijdens de coronapandemie in het najaar van 2020. In dat jaar zijn mensen het minst tevreden over de afstemming tussen zorgverleners en over de preventieve begeleiding van hun ziekte (respectievelijk 64% en 67% is (helemaal) tevreden). Trendanalyses laten zien dat de tevredenheid over preventieve begeleiding is gedaald en dat de tevredenheid over gezamenlijke besluitvorming door de jaren heen schommelt. Mensen die gevolgen van de coronapandemie ervaren voor hun zorg of gezondheid beoordelen aspecten van de gezondheidszorg minder positief dan diegenen die geen gevolgen ervaren. Conclusie Het is belangrijk om aandacht te hebben voor patiëntervaringen met zorgprocessen, waarbij extra nadruk zou moeten liggen op informatie over preventie, ondersteuning bij veranderingen in de gezondheid en de behandeling tijdens de coronapandemie, en goede afstemming tussen zorgverleners. Digitaal aanvullende content De online versie van dit artikel (10.1007/s12508-022-00329-y) bevat aanvullend materiaal, toegankelijk voor daartoe geautoriseerde gebruikers.

IntroductionInternationally, there is growing attention for participation of young people with a chronic condition (YPCC). As an important value of integrated care, participation promotes the inclusion of YPCC in decision-making that concern them. Research (e.g. scientific) and implementation (e.g. practice-oriented) projects aimed at improving their health and quality of lives are, therefore, increasingly carried out with rather than for them. Yet, high quality evidence of the impact of their participation is missing.MethodsThe dearth of evidence on impact of YPCC’s participation can be related to a lack of shared understanding of what ‘participation’ entails and the absence of systematic evaluation methods. We have conducted a scoping review to map reported definitions, goals, activities, experiences and impact of YPCC’s participation and possible shifts herein over time. Searches were conducted in five databases; twenty-three articles were included.Following the review, we initiated a study to quantitatively explore the relation between YPCC’s participation in research and implementation projects and outcomes of these projects. Data were collected among project leaders of 17 participatory projects and 146 YPCC involved in these projects.ResultsThe past decades, limited progress has been made in the evidence base on the impact of YPCC’s participation. Our review has shown that, over time, definitions of participation continue to be broad and diverse and that studies report similar experiences and challenges time and again.These findings have led to the initiation of the quantitative exploration mentioned earlier. Results show that 27 percent of the variation in project outcomes is a result of differences between projects. We investigated whether this variation can be explained by participation variables. One significant relation was found: when participating YPCC considered themselves important for a project, they experienced better project outcomes. This is in line with studies suggesting that YPCC experience personal growth, when they consider their role in a project meaningful.DiscussionIt is imperative that a consistent evidence base on YPCC’s participation and its impact is built. This can contribute to the validity and reliability of participation by teaching us about what works for whom and under what circumstances.ConclusionsLimited progress has been made in the evidence base on YPCC’s participation and its impact. Our quantitative exploration provides insight into the relation between YPCC’s participation and outcomes, but more research is needed to learn about effective participation.Lessons learnedTo move the evidence base forward, changes need to be made in how participation is studied. This includes building on previous work (instead of reinventing the wheel), defining and thoroughly reporting what is meant by participation and using systematic impact measurements.LimitationsIn the review, some articles may have been overlooked, due to the broad search string on chronic conditions and inconsistencies in how participation is defined. In the quantitative study, findings are based on a relatively small project sample.Suggestions for future researchMore well-reported research should be conducted that uses systematic and objective evaluation methods and builds on previous studies to improve the evidence base on the impact of YPCC’s participation.

Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.