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Abstract Background Participatory research has gained traction as an approach to unlock perspectives when creating scientific knowledge and to facilitate societal changes. By conducting research with people, participatory research strives to engage individuals’ perspectives in designing, conducting, and disseminating the research. Nevertheless, few studies have unpacked how understandings of the studied phenomenon are shaped among diverse research partners and, concurrently, how different perspectives are combined. Nested within an overall participatory mixed methods study on aging with multiple sclerosis (MS), this qualitative study explores how understandings of aging with MS are shaped in encounters between university researchers, older adults with MS, and employees in a patient association. Methods The study was collaboratively conducted in Denmark by three research partners: a group of older adults with MS, employees in a patient association, and university researchers. Data on how different understandings of aging with MS were represented and shaped during the three-year research process was generated through field notes, meeting minutes, focus group interviews, and individual interviews. The collected data was analyzed through a thematic network analysis. Results The study demonstrates how different understandings of aging with MS were represented among the research partners when the research was initiated. These understandings were shaped prior to —and, therefore, outside—the research setting, drawing from the research participants’ lived experiences, professional backgrounds, and organizational cultures or situated in larger societal narratives. Through a process centered on reflexivity among the engaged research partners, the understandings of what it means to age with MS was shaped and re-shaped and eventually merged into a more dynamic understanding of later life with MS where different perspectives could co-exist. Conclusion The findings demonstrate that research partners, including older adults with MS and employees from a patient association, brought diverse understandings to the study. Reflexive practices enabled these perspectives to co-exist, enhancing engagement and transparency, and fostering a dynamic understanding of later life with MS. This highlights the value of reflexivity in evolving complex understandings within participatory research.

Abstract Background Today, public health research on later life, including the literature on aging with multiple sclerosis, is often centered on aging as a biological phenomenon. By applying a participatory narrative approach, this study conveys how studying biographical aging provides important insights into the elements of aging that people find relevant and meaningful. Based on narratives told by older adults living with multiple sclerosis, we explore how sensemaking unfolds and shapes the management of later life with a chronic and progressive disease. Methods Twenty-four older adults (aged 65 years or older) living with multiple sclerosis in Denmark were engaged in taking photographs of their everyday lives and unfold the stories framed in their photographs in subsequent narrative interviews. Interview data were analyzed using a thematic narrative analysis. Aligned with the narrative approach, the findings of the analysis are presented using five cases chosen because they provide insight into the general patterns and themes identified across the narratives of the 24 participants. Results Based on their photographs, the participants narrated stories centered around what they perceived as meaningful activities and social identity when aging with a progressive disease. Three themes emerged from the analysis in relation to how participants made sense of and managed aging with multiple sclerosis: 1) a life woven by non-detachable life experiences, 2) envisioning the future and 3) challenging life circumstances. Conclusion The findings of the study highlight that aging with multiple sclerosis is not only a biological phenomenon but also something nested in people’s biographies. How people make sense of and manage their everyday lives is shaped by strategies from all parts of their lives—past, present and future. This understanding of later life with multiple sclerosis may enhance the care offered to older adults living with multiple sclerosis if greater emphasis is placed on the exploration of their narratives and the things they find meaningful.

Migrants are especially susceptible to inequitable access to health care services and their access to health care may be further compromised by the tradition of informal patient payments in the Western Balkan countries. As a particularly vulnerable group, this study focused on the asylum-seeking migrants and the role of informal patient payments as an avenue for migrants’ health care access in Serbia. Qualitative interviews were conducted in August and September of 2018 with civil servants (intercultural mediators and information workers, n = 8) and asylum-seeking migrants ( n = 6). Data was analyzed using the phenomenological hermeneutical approach. The study showed that intercultural mediators had a pivotal role in shaping better and quicker access to health care services for asylum-seeking migrants in Serbia, which also lowered their exposure to informal patient payments. A commonness in paying informally was found in Serbia, especially due to the high value put into doctors and the lacking resources of the health care system. The asylum-seeking migrants seemed exempted from such payments. Reducing these informal patient payments for health care is highly important to facilitate equity in access to health care

Abstract Background There is growing emphasis on the need for ensuring person-centred care for patients living with chronic kidney disease as this will benefit patients, providers, and healthcare systems alike. Nevertheless, less emphasis is given to how this complex concept is practiced in clinical encounters and how it is experienced by patients. This qualitative multi-perspective study investigates how person-centred care for people living with chronic kidney disease is practiced and experienced by patients in clinical encounters at a nephrological ward at a hospital in the capital region of Denmark. Methods The study builds upon qualitative methodologies, including field notes from observations of clinical encounters between clinicians and patients in an out-patient clinic (n = ~ 80) and in-person interviews with patients in peritoneal dialysis (n = 4). Key themes from field notes and interview transcripts were identified through thematic analysis. Analyses were informed by practice theory. Results Findings illustrate that person-centred care is practiced in a relational and situational encounter between patients and clinicians as dialogues about choice of treatment modality, which is shaped by the individual’s life circumstances, preferences, and values. The practice of person-centred care appeared to be complex and interlinked with a range of factors, individual to each patient. We identified three themes of relevance for practices and experiences related to person-centred care: (1) Patients’ perceptions of living with chronic kidney disease. Perceptions differed according to medical history, life situation and prior experiences with treatment in the healthcare system. These patient-related factors were perceived to be important for person-centred care to unfold; (2) Relations between patients and healthcare professionals were important for patients’ experiences of trust and appeared fundamental for the practice and experiences of person-centred care; and (3) Decision-making on treatment modality that is the best fit for each patient’s everyday life, appear to be shaped by the patient’s need for knowledge about treatment modalities and level of self-determination in the decision-making. Conclusions The context of clinical encounters influences the practices and experiences of person-centred care, where health policies and lack of embodiment are identified as barriers for providing and experiencing person-centred care.

Objectives There is a need for novel approaches to address the complexity of social inequality in health. Public–private partnerships (PPPs) have been proposed as a promising approach; however, knowledge on lessons learnt from such partnerships remain unclear. This study synthesises evidence on opportunities and challenges of PPPs focusing on social inequality in health in upper-middle-income and high-income countries.Design A systematic literature review and meta-synthesis was conducted using the Mixed Methods Appraisal Tool for quality appraisal.Data sources PubMed, PsychInfo, Embase, Sociological Abstracts and SocIndex were searched for studies published between January 2013 and January 2023.Eligibility criteria Studies were eligible if they applied a quantitative, qualitative, or mixed methods design and reported on lessons learnt from PPPs focusing on social inequality in health in upper-middle-income and high-income countries. Studies had to be published in either English, Danish, German, Norwegian or Swedish.Data extraction and synthesis Two independent reviewers extracted data and appraised the quality of the included studies. A meta-synthesis with a descriptive intent was conducted and data were grouped into opportunities and challenges.Results A total of 16 studies of varying methodological quality were included. Opportunities covered three themes: (1) creating synergies, (2) clear communication and coordination, and (3) trust to sustain partnerships. Challenges were identified as reflected in the following three themes: (1) scarce resources, (2) inadequate communication and coordination, and (3) concerns on distrust and conflicting interest.Conclusions Partnerships across public, private and academic institutions hold the potential to address social inequality in health. Nevertheless, a variety of important lessons learnt are identified in the scientific literature. For future PPPs to be successful, partners should be aware of the availability of resources, provide clear communication and coordination, and address concerns on distrust and conflicting interests among partners.PROSPERO registration number CRD42023384608.

Abstract Background The Norwegian colorectal cancer (CRC) screening programme started in May 2022. Inequities in uptake of CRC screening is a concern, and we expect that immigrants are at risk of non-uptake. Immigrants from Poland are the most populous immigrant group in Norway. The purpose of this study was to identify and explore factors that may facilitate Polish immigrants’ access to the Norwegian CRC screening programme. Material and methods This study was based on qualitative interviews with ten Polish immigrants in Norway. The participants represented a convenience sample that varied in terms of gender, education, employment, time in Norway, place of residence, Norwegian language skills and ties to the Norwegian-Polish community. We performed thematic content analysis to understand CRC screening from the perspective of Polish immigrants, using transnationalism and Levesque’s conceptualization of accessibility as theoretical frameworks. Results We grouped our findings into three themes; “understanding of CRC development and the need to access health care”, “binationalism” and “improving accessibility through information”. Within these themes, various factors influenced the participants’ accessibility to CRC screening, namely knowledge about the screening and about causes, development and prevention of the disease, language, choice of screening country, trust in health personnel’s competence, information needs, methods and sources, as well as participants’ perception of the faecal immunochemical test screening user manual. These factors were further influenced by communication between the Polish community in Norway and Poland, as well as travel between the countries. Conclusion We identified several factors that can be targeted with an aim to increase Polish immigrants’ access to the Norwegian CRC screening programme. Effective measures could include increasing cultural competence among health care providers and providing information in Polish through Polish-speaking health care professionals, general practitioners and internet portals used by the Polish-speaking community. Focusing on accessibility in a transnational setting, our findings may be of interest for policy makers and service providers planning preventive health measures for immigrants.

Abstract Background Social integration and perceived neighborhood environment are recognized as important social determinants of health. However, little is known about the association between social integration and perceived neighborhood environment among underrepresented population groups, such as residents in disadvantaged neighborhoods, in public health research. The aim of this study is to: 1) Describe the levels of social integration and 2) Investigate the association between social integration and neighborhood dissatisfaction and unsafety among middle-aged and older social housing residents. Methods A multilingual face-to-face interviewer-administrated survey questionnaire was conducted among 206 residents aged 45 years and above (response rate: 34.1%) of various nationalities in disadvantaged socioeconomic positions in a social housing area in Denmark. The assessment of social integration was based on cohabitation status, frequency of face-to-face and non-face-to-face interaction with social relations and participation in local association activities. Neighborhood dissatisfaction measured the level of dissatisfaction with the neighborhood, and neighborhood unsafety assessed the level of unsafety being outdoors in the neighborhood. Descriptive statistics were conducted to illustrate respondent characteristics and the distribution of social integration among the study population. Logistic regression models were applied to analyze associations between social integration and neighborhood dissatisfaction and unsafety, adjusted for age, sex, country of origin, educational attainment and employment status. Results In total, 23.8% of the respondents reported low levels of social integration. A medium level of social integration was associated with higher odds of neighborhood dissatisfaction (OR: 2.36; 95% CI: 1.04–5.38) compared to the highest level of integration. A low frequency of face-to-face interaction was associated with higher odds of neighborhood dissatisfaction (OR: 2.65; 95% CI: 1.16–6.06) and neighborhood unsafety (OR: 2.41; 95% CI: 1.04–5.57) compared to the highest frequency of face-to-face interaction. Conclusions Almost one-fourth of respondents reported low levels of social integration. A medium level of social integration was associated with neighborhood dissatisfaction. A low frequency of face-to-face interaction was associated with neighborhood dissatisfaction and unsafety. The results suggest that targeted health promotion interventions designed to foster face-to-face interaction, hold potential to reduce neighborhood dissatisfaction and unsafety among residents in disadvantaged neighborhoods.

Abstract Background Return to work is a key rehabilitation goal for people with cardiovascular disease (CVD) because employment matters to individuals and societies. However, people recovering from CVD often struggle with returning to work and maintaining employment. To identify people in need of vocational counselling, we examined the probability of feeling under pressure to return to work following CVD. Methods We conducted a combined survey- and register-based study in a randomly selected, population-based cohort of 10,000 people diagnosed with atrial fibrillation, heart failure, heart valve disease, or ischaemic heart disease in 2018. The questionnaire covered return-to-work items, and we reported the probabilities of feeling under pressure to return to work with 95% confidence intervals (CIs) in categories defined by sex, age, and CVD diagnosis. Results The survey response rate was 51.1%. In this study, we included 842 respondents (79.7% men) aged 32–85 years, who had returned to work following a sick leave. Overall, 249 (29.7%) had felt pressure to return to work. The probability of feeling under pressure to return to work ranged from 18.3% (95% CI: 13.1–24.6) among men aged > 55 years with atrial fibrillation to 51.7% (95% CI: 32.5–70.6) among women aged ≤ 55 years with atrial fibrillation. In addition, 66.0% of all respondents had not been offered vocational rehabilitation, and 48.6% of those who reported a need for vocational counselling had unmet needs. Survey responses also indicated that many respondents had returned to work before feeling mentally and physically ready. Conclusion A substantial proportion of people with cardiovascular disease feel under pressure to return to work, and this pressure is associated with age, sex, and diagnosis. The results show that vocational rehabilitation must be improved and emphasize the importance of ensuring that cardiac rehabilitation programmes include all core rehabilitation components.

Abstract Background Findings about the relationship between individuals’ social relations and general practitioner (GP) contact are ambiguous as to whether weak social relations are associated with an increased or decreased consultation pattern. Furthermore, social relations may affect GP contact differently for men compared to women, between socioeconomic groups and according to perceived need. The overall aim of the study is to examine the association between functional aspects of social relations, perceived emotional and instrumental social support, the tendency to consult a GP and the frequency of GP contact. Methods The study comprised 6911 individuals aged 49–61 at baseline from the Copenhagen Aging and Midlife Biobank (CAMB). We conducted a two-part regression to explore the association between perceived emotional and instrumental social support and GP contact (tendency and frequency), controlling for age, sex, occupational social class, cohabitation status and number of morbidities. Results Results show no overall effect of the perceived social support aspects of social relations on GP contact independent of health-related needs. Conclusions Our results do not support that perceived social support, reflecting functional aspects of social relations, are associated with general practitioner contact among middle-aged people. Trial registration The study has been registered and approved by the Danish Data Protection Agency and the local ethical committee (approval No.H-A-2008-126 and No. 2013-41-1814).Keywords: social relations, perceived social support, healthcare utilisation, general practitioner, middle-aged

Abstract Background Shared decision-making (SDM) is a cornerstone in patient-centred care and there has been an increase in programmes aiming to improve clinicians’ abilities to engage in it. However, the evidence for such programmes’ effectiveness on clinicians’ use of SDM in clinical practice is sparse. The SDM Ambassador course, developed and facilitated by the Danish Association of Junior Doctors in Denmark (Junior Doctors Denmark) is a Danish SDM training programme for junior medical doctors (JMDs). This study aims to evaluate the SDM Ambassador course, with a focus on satisfaction, usefulness, and dissemination of learning outcomes in clinical practice. Methods This is a mixed methods study, consisting of an online survey followed by semi-structured interviews. The participants were JMDs who had trained to be SDM ambassadors between May 2016 and September 2020 (n=185). The ambassadors were invited to participate in the survey and 112 ambassadors completed it, corresponding to a response rate of 61%. Descriptive statistics and χ2-tests were conducted. Subsequently, purposive sampling was used to identify 10 ambassadors for interviews. The interviews were transcribed, encoded, and subsequently analysed thematically. Finally, the quantitative and qualitative results were integrated. Results Overall, the ambassadors were satisfied with their learning outcomes and experienced a greater capacity to unfold the perspectives of their patients. A majority (79%) reported that they had used SDM in their clinical practice with patients, and 59% had disseminated SDM to their colleagues. The usefulness and dissemination of learning outcomes in the clinic were shaped by the ambassadors’ perceptions of their moderate professional experience as junior doctors, and constrained by structural and cultural conditions in the context of their clinical practice. Conclusions Despite overall satisfaction with their learning outcomes, several ambassadors experienced conditions constraining the translation of their learning outcomes into clinical practice. To improve the efficacy of the training programme, continuous refresher courses should be added, while enhanced support at organisational and political levels is necessary for SDM to become an integral feature of the clinical encounter. Trial registration Not applicable.

Objectives Return to work is a key rehabilitation goal, however, people recovering from cardiovascular disease (CVD) often struggle with returning to work. The aim of this study was to conduct a systematic review and meta-synthesis of the existing qualitative evidence on barriers and facilitators to return to work experienced by people with CVD.Methods A systematic literature search was conducted in PubMed, Embase, Web of Science, PsycINFO, Scopus and CINAHL in August 2022. The reference lists of the included articles were searched. The Critical Appraisal Skills Programme was used for quality appraisal and a meta-synthesis was employed.Findings This review includes 15 studies of overall high methodological quality. Barriers covered four themes: physical limitations, psychological and relational factors, the working context and support within health and social care systems. Facilitators were related to five themes: return to normality, enhancing well-being, financial concerns, the working context and support within health and social care systems.Conclusion Our findings highlight that return to work following CVD is a complex process influenced by individual factors, as well as work-related factors, factors in the health and social care systems and social security policies and regulations. To improve return to work, this review illustrates a need for individualised, multidisciplinary and coordinated vocational rehabilitation programmes that accommodate potential barriers to re-employment. Similarly, this review highlights how vocational rehabilitation programmes should ensure individualised information and support early in the rehabilitation process, as well as the importance of engaging relevant stakeholders, such as employers, in making individualised return-to-work plans.

This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.