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Although in recent years plenty of work was published on LEGO® Serious Play®, there are only a manageable number of publications about its applicability in a research context. Undoubtedly, LEGO® Serious Play® can be a methodological enrichment particularly for participatory research with people in vulnerable conditions. However, its utilization in research should always be well reflected and adapted to the specific research context. Based on experiences gained in the H2020 project "MIMY – EMpowerment through liquid integration of Migrant Youth in vulnerable conditions", the following article depicts the potentials and limitations of LEGO® Serious Play® and critically assesses its value for research purposes. [ABSTRACT FROM AUTHOR]

The study examined art therapists' subjective experiences, attitudes, and perceptions when participating in a longitudinal study in the Israeli public education system. Seventy-six reflections written by 38 art therapists on their participation in art therapy research were analyzed. Sixteen therapists also took part in focus groups, 5–7 years after the original study. Findings indicated that despite the time and energy required to take part in the study, the therapists were proud to have made a contribution to research, learned a great deal from participating, and felt that taking part had a positive effect on the course of treatment. They viewed their participation in the research as an empowering and valuable experience for them and for their clients. [ABSTRACT FROM AUTHOR]

Introduction: Women with addiction issues are under-researched, despite previous evidence that women's needs are less understood than men's and that services can overlook gender-specific issues. The majority of women in treatment are mothers and a significant number have contact with child welfare services. The voices of these women are needed to shape and influence evidence-based treatment and service development. Aim: To examine reasons and rationale for participation in research in mothers with addiction issues and involvement with the child welfare system. Method: Reflexive thematic analysis was used on interview transcripts from two qualitative studies. Individual themes from each study were combined and analysed to develop themes covering both studies and at different timepoints in process of child welfare assessment or removal of child/ren. Results: Three themes were identified (1) altruism; (2) personal benefit; and (3) empowerment. These mothers wanted to help with research. However, they also participated with the hope that this might facilitate the return of their children or help them to access support or services. A change over time was evident and, in those further down the line from child removal, there was a stronger want for their voices to be heard in order to advocate for other women and create change in services. [ABSTRACT FROM AUTHOR]

Much research is conducted to evaluate digital-based solutions for health-care services, but little is known about how such evaluations acknowledge diversity in later life. This study helps fill this gap and analyses participation in the evaluation of a web-based mobile phone system for monitoring the post-operative progress of patients after day surgery. Participation is conceptualised as resulting from three processes: pre-screening, recruitment and self-selection. Based on field information and survey data, this study models (a) the (non-)participation in a sample of 498 individuals aged 60 and older that includes non-screened, non-recruited, decliners and participants in the evaluation, and (b) the individual decision to participate in a sample of 210 individuals aged 60 and older who were invited to take part in the evaluation. Increasing age enhances the likelihood of not being screened, not being recruited or declining the invitation. Those not recruited were most often ineligible because of technology-related barriers. Decliners and participants differed by age, gender, job, health status, digital skills, but not by social participation. Results suggest that highly specific groups of older people are more likely to be involved than others. Old-age diversity is not properly represented in digital health research, with implications for the inclusivity of new digital health technologies. This has implications for increased risks of old-age exclusion and exacerbation of social and digital inequalities in ageing societies. [ABSTRACT FROM AUTHOR]

IntroductionWomen with addiction issues are under-researched, despite previous evidence that women’s needs are less understood than men’s and that services can overlook gender-specific issues. The majority of women in treatment are mothers and a significant number have contact with child welfare services. The voices of these women are needed to shape and influence evidence-based treatment and service development.AimTo examine reasons and rationale for participation in research in mothers with addiction issues and involvement with the child welfare system.MethodReflexive thematic analysis was used on interview transcripts from two qualitative studies. Individual themes from each study were combined and analysed to develop themes covering both studies and at different timepoints in process of child welfare assessment or removal of child/ren.ResultsThree themes were identified (1) altruism; (2) personal benefit; and (3) empowerment. These mothers wanted to help with research. However, they also participated with the hope that this might facilitate the return of their children or help them to access support or services. A change over time was evident and, in those further down the line from child removal, there was a stronger want for their voices to be heard in order to advocate for other women and create change in services.

Although in recent years plenty of work was published on LEGO® Serious Play®, there are only a manageable number of publications about its applicability in a research context. Undoubtedly, LEGO® Serious Play® can be a methodological enrichment particularly for participatory research with people in vulnerable conditions. However, its utilization in research should always be well reflected and adapted to the specific research context. Based on experiences gained in the H2020 project “MIMY – EMpowerment through liquid integration of Migrant Youth in vulnerable conditions”, the following article depicts the potentials and limitations of LEGO® Serious Play® and critically assesses its value for research purposes.

Protection of human subjects in research typically focuses on extrinsic rather than intrinsic motivations for participation in research. Recent sociological literature on altruism suggests that multiple kinds of altruism exist and are grounded in a sense of connection to common humanity. We interviewed participants in eight community-centered research studies that sampled for endocrine disrupting compounds and that shared research findings with participants. The results of our analysis of participation in these studies indicate that altruistic motivations were commonly held. We found that these sentiments were tied to feeling a sense of connection to society broadly, a sense of connection to science, or a sense of connection with the community partner organization. We develop a new concept of banal altruism to address mundane practices that work towards promoting social benefits. Further, we offer that research altruism is a specific type of banal altruism that is a multi-faceted and important reason for which individuals choose to participate in community-centered research.

Background: People from ethnic minorities in the UK have higher rates of mental health problems and are less likely to take part in mental health research. Previous research indicates that participant information sheets (PIS) are complex, and this complexity may impair comprehension more significantly for ethnic minority participants. Improving the readability of patient information can be achieved through user testing. We aimed to improve the readability of a PIS through user testing in an ethnic minority group in an ongoing trial (ROSHNI-2). Methods: An independent groups design was used to test the readability of the ROSHNI-2 PIS among South Asian women. There were two rounds of testing (n=31 women in total). South Asian women were asked to read the original PIS, then find and demonstrate an understanding of 19 key aspects of the trial. Based on the findings from the first round, the PIS was rewritten, redesigned, and retested. Results: Using the original PIS, only 2 of the 19 (11%) questions were found and understood by at least 80% of participants. In the revised PIS, 6 of the 19 (32%) questions were found and understood by at least 80% of participants. Conclusions: User testing and re-writing of a PIS resulted in a higher proportion of participants comprehending important information about a trial. This approach could improve participation in trials among ethnic minority communities.

Background: The involvement of older adults in research on digital health is uneven with respect to e.g. age, gender, health status, and digital skills. However, little is known regarding the impact of the uneven involvement of older adults in digital health research on researched outcomes. This study helps to fill this knowledge gap and identifies the effects of uneven involvement of older adults in digital health research on researched outcomes, and also develops a correction for this., Methods: Data are retrieved from a digital health intervention for postoperative monitoring of people who underwent day surgery in Sweden. Based on field information on the recruitment process and researched outcomes for the intervention, this study (1) tested intervention effects by using two standard unweighted procedures in a sample of 281 individuals aged 50 years or older, and then (2) used the information on participants, non-participants and their respective probabilities to be involved in the intervention study to perform a weighting of the intervention effects for each step of selection and for the study group membership., Results: The intervention effects were found to be overestimated due to overrepresentation of groups which gained from receiving the intervention. No intervention effects were found after adjustment for participation bias., Conclusions: Selective participation of older adults in digital health research biases research outcomes and can lead to overestimation of intervention effects. Weighting allows researchers to correct and describe the impact of selective participation on researched outcomes., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Engaging youth with disabilities and families in research is critical in facilitating knowledge utilization to impact processes and outcomes of services and interventions. Organizations such as INVOLVE in the United Kingdom, the Canadian Institutes of Health Research and the Patient-Centered Outcomes Research Institute in the United States advocate for engaging stakeholders in all aspects of the research process. Despite these efforts, there is a need for research to identify best practices and approaches for stakeholder engagement in research as current descriptions around processes are lacking. In this perspective paper, we share our insights and experiences with engaging youth with disabilities and families as members of the research team. We offer considerations and strategies for stakeholder engagement, as well as identify relevant frameworks to facilitate stakeholder engagement in research. We encourage researchers to share and document their experiences with stakeholder engagement in research to provide guidance for others with shared interests. We hope this paper will initiate conversations among researchers about best practices to maximize the full potential of stakeholders' time and input. [ABSTRACT FROM AUTHOR]

Abstract: Background: Burns are a global public health problem. In South Africa, the rate of paediatric burn deaths is 5 times higher than other upper middle‐income countries, with concentrations in impoverished settings. Globally, the majority of research focuses on expert and caregiver descriptions of burn occurrence, causation, and prevention, with limited consideration of children's perspectives. This study investigated children's understanding of the causation and prevention of childhood burns. Methods: Data were collected from eighteen 10‐ to 11‐year‐old children living in selected impoverished, fire‐affected neighbourhoods in Cape Town, through 3 isiXhosa focus groups. All focus groups were transcribed, coded, and analysed for emerging themes through thematic analysis. Results: Themes regarding burn causation and risks centred around 4 themes: (a) developmental limits in context; (b) domestic chores, child capacity, and inability to say “no”; (c) inadequate supervision and compromised caregiving; and (d) unsafe structures. Child accounts of prevention pertained to (e) burn injury prevention activities in comprised environments and emphasized child agency, and upgrading the physical environment. Conclusion: The children in this study ascribed burn injuries as the consequence of their developmental limits in the context of poverty, constraints on parental supervision, and unsafe environments. The children recommended safety education and upgrading their physical environments as part of burns injury prevention. The child accounts offer useful insights to inform safety interventions in impoverished settings. [ABSTRACT FROM AUTHOR]

Background: The African, Caribbean and Black communities have been found to be reluctant to participate in health research in North America. This is partly attributed to historical experiences as well as their cultural beliefs. Cultural beliefs about the uses of breast milk/fluids could further hinder the participation of African, Caribbean, and Black communities in research involving the collection of breast milk/fluids samples. Methods: We conducted 17 in-depth interviews and three group interviews (n = 10) with HIV+ African, Caribbean and Black women living in Ontario, Canada to explore their cultural beliefs about breast milk/fluids and their acceptance of participating in research that involves the provision of breast fluid samples. Study design: Qualitative study involving in-depth interviews. Results: Our respondents believed that breast milk/fluids should be used for infant feeding and for curative purposes for a variety of children's health ailments as well as ailments experienced by other family members. The cultural belief that breast milk/fluids could be used to bewitch the baby and mother and the perception that it is intrusive (equating breast milk/fluids research to DNA testing), could prevent African, Caribbean and Black women from participating in research involving the collection of breast milk/fluids. Despite these fears, some respondents expressed that they would participate if the research results would benefit them directly, for example, by finding a cure for HIV, enabling HIV+ mothers to breastfeed, or contributing to developing new drugs or vaccines for HIV. Women's recommendations to facilitate successful recruitment included giving incentives to participants, and employing a recruiter who was trustworthy, informed, and culturally sensitive. Conclusion: Cultural beliefs could present barriers to recruitment and participation of Africa, Caribbean and Black communities in health research involving breast milk/fluid samples. Successful recruitment for future studies would necessitate researchers to be culturally aware of the beliefs held by African, Caribbean and Black women, to build trust, and use an appropriate recruiter. While the findings relate to breast milk/fluids, the suggested recommendations for facilitating recruitment of research participants from these communities may be useful to consider when recruiting ethnically and culturally similar participants for research involving biological samples. [ABSTRACT FROM AUTHOR]

Researchers have found that research altruism motivates research participation, but little is known about what aspects of lived experience motivate this socially focused altruistic participation when participation emerges at the intersection of illness, identity, and injustice. This study examines adults living with sickle cell disease (n = 235) in the United States enrolled in the INSIGHTS clinical research study to investigate what aspects of the sickle cell disease lived experience, understood here as pain and illness perception, are associated with reporting subsidiary and primary altruistic motivations for participating in clinical research. Results from two binary logistic regressions indicate that pain frequency is positively associated with greater odds of reporting subsidiary altruistic motivations, and pain frequency and pain severity are positively associated with greater odds of citing primary altruistic motivations. Conversely, pain interference and illness perception are associated with lower odds of reporting primary altruistic motivations. These results reveal that for this racialized population, participation, although overwhelmingly altruistic, is rooted in an experience of persistent pain. Researchers must disentangle measures of lived experience in order to better understand what factors underlie and prevent participation. • Altruistic participation is rooted in a lived experience of persistent pain. • Pain frequency is associated with greater odds of reporting altruistic motivations. • Illness perception is associated with lower odds of primary altruistic motives. • Need to examine the intersection of race, ethnicity, and illness experience. • Opportunity to disentangle measures of lived experience sensitive to racialization. [ABSTRACT FROM AUTHOR]

Background Persons accessing food from nonprofit distribution sites face numerous challenges and typically have significant unmet health needs. However, given limited and intermittent healthcare system engagement, this vulnerable population is underrepresented in clinical research. We sought to better understand the health needs of a nonclinical population to inform future research and interventions. Methods : Focus groups were conducted in English ( n = 4) and Spanish ( n = 4) with clients of Crossroads Community Services (CCS), the largest distributor of North Texas Food Bank. Discussions probed participants' health status, healthcare utilization, understanding and utilization of mammography, and attitudes toward participation in research. Results Participants included 42 CCS clients, primarily Hispanic or African American women. Participants reported multiple comorbid conditions among household members, yet utilization of health services was often limited by cost. The majority expressed interest in participating in research to communicate their health concerns and obtain emotional support. Conclusion CCS clients represent a high-need, under-reached population willing to engage in health-related research that affords them opportunity to connect with peers in group settings and obtain information to improve management of daily life challenges. The Community Assistance Research (CARe) Initiative, a community-academic collaboration, establishes a much-needed opportunity for ongoing clinical research and intervention among this underserved population. [ABSTRACT FROM AUTHOR]

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Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies. This article discusses barriers associated with research into dementia and describes a UK government initiative, Join Dementia Research, which supports research participation for people with dementia.