Rationalising public participation in the health service: the case of research ethics committees

This paper seeks to raise questions about the growing emphasis on public participation in decision-making in the health service. It examines the case study of lay participation on Local Research Ethics Committees (LRECs'). In the light of contested theoretical conceptions of the value of lay participation and an absence of a centrally defined role this paper examines practice. It uses qualitative evidence collected in 45 semi-structured interviews with committee members and observations of twenty committee meetings. It examines members' own conceptualisations of lay involvement and the contributions they are able to make in meetings as a result of these conceptualisations. It concludes that without better-defined roles for lay members on these committees they do not possess the authority or knowledge to challenge the experts' technical rendering of research.     

Child sexual abuse: An undermining of the polis

This paper explores the sexual abuse literature and the political participation literature for possible linkages. Research on political participation indicates low levels of political trust and damaged self-esteem have important impacts on style and level of political involvement. The literature on child sexual abuse indicates potential root causes for lowered trust and self-esteem which have implications for adult participation in the civic arena. Sexual abuse has negative effects on individual victims and also undermines the foundations of democratic societies.     

Determinants of participation in worksite health promotion programmes: a systematic review

Background  

The workplace has been identified as a promising setting for health promotion, and many worksite health promotion programmes have been implemented in the past years. Research has mainly focused on the effectiveness of these interventions. For implementation of interventions at a large scale however, information about (determinants of) participation in these programmes is essential. This systematic review investigates initial participation in worksite health promotion programmes, the underlying determinants of participation, and programme characteristics influencing participation levels.     

Reasons among older Swedish women of not participating in a food survey

OBJECTIVES: To (a) examine participation rate as a function of municipality, age group and living status; and (b) investigate the main reasons for exclusion and declining as stated by the women themselves. DESIGN: Analysis of participation rate and content analysis of statements given in phone calls explaining exclusion or declination from a project in which 24 h recalls and food-diaries were used. SUBJECTS: Self-managing Swedish women (n=505) were systematically selected from a stratified random sample covering single living and cohabiting women aged 64-68, 74-78 and 84-88 y living in three municipalities. RESULTS: No significant differences were found among included and declining women when municipalities and living status was analysed, but significantly more women in the oldest group were excluded (P>0.01). Among those in their 80s living at home, the usual reasons for exclusion were illness, disability or dementia, and many lived in institutions for old people. The four most used explanations to decline participation were 'lack of time', 'tired, fragile, sick or having bad memory', 'not willing to participate in scientific studies' and 'too old and nothing to contribute'. CONCLUSIONS: The participation rate was, compared with other food surveys in the older generation, fairly good, especially among those in their 80s. However, the most active and the very ill and disabled did not participate. SPONSORSHIP: The Swedish Council for Social Research, the Swedish Council for Forestry and Agricultural Research, the Swedish Foundation for Health and Care Sciences and Allergy Research and Uppsala University.     

Teilhabeforschung

Shaping one’s own life and feeling equal in society is an essential aspect of participation. Based on the UN Convention on the Rights of Persons with Disabilities, the Social Security Code IX and the International Classification of Functioning, Disability and Health (ICF), participation is relevant for the German health system. The cross-sectional discipline of participation research investigates conditions for self-determined and equal participation in society. Research results can reinforce and promote the participation of humans with disabilities. Participation research uses established quantitative and qualitative approaches. Moreover, participatory research is a relevant approach that demands involving persons with disabilities in decisions in the research process. In the future, it will be important to concentrate findings and to connect researchers. The participation research action alliance (Aktionsbündnis Teilhabeforschung), which was established in 2015, aims to make funding accessible as well as strengthen and profile participation research.     

Effects of an exercise program linked to primary care on depression in elderly: fitness as mediator of the improvement

Quality of Life Research - The present study aimed to analyse the effects of 12 months of participation in a public physical activity program linked to primary care on depression level and...     

Does social participation accelerate psychological adaptation to health shocks? Evidence from a national longitudinal survey in Japan

Quality of Life Research - It is well-known that people psychologically adapt to health shocks over time and social participation (SP) has a favourable impact on health. Combining these two...     

Evidence-based risk assessment and recommendations for physical activity clearance: an introduction (1) (1) This paper is one of a selection of papers published in this Special Issue, entitled Evidence-based risk assessment and recommendations for physical activity clearance, and has undergone the Journal's usual peer review process

The Physical Activity Readiness Questionnaire (PAR-Q) and the Physical Activity Readiness Medical Evaluation (PARmed-X) are internationally renowned and extensively used preparticipation screening tools. However, recent feedback from end-users has identified limitations to the existing PAR-Q and PARmed-X screening process. As such, a systematic evaluation of the PAR-Q and PARmed-X forms was conducted, adhering to the Appraisal of Guidelines for Research and Evaluation (AGREE) criteria. Recognized experts in physical activity (PA) and prominent health conditions worked with an expert consensus panel to increase the effectiveness of the PAR-Q and PARmed-X PA participation clearance process. The systematic review process established that the health benefits of PA participation far outweigh the risks in the vast majority of asymptomatic and symptomatic individuals. A new risk continuum and decision tree process was created to allow for the effective risk stratification of prominent health conditions, reducing greatly the barriers to PA participation for the majority of individuals. The new PA participation clearance process is available in new paper and online versions (PAR-Q+) and the PARmed-X was replaced with an online interactive computer programme (ePARmed-X+). It is anticipated that this new risk stratification and PA clearance process will reduce markedly the barriers for PA participation for both asymptomatic and symptomatic individuals.     

A process for the inclusion of Aboriginal People in health research: lessons from the Determinants of TB Transmission project

The Determinants of TB Transmission (DTT) project, a federally-funded study covering the period April 1, 2006-March 31, 2013, and examining the determinants of TB transmission amongst the Canadian-born population (Aboriginal and non-Aboriginal) in the prairie provinces of Canada, took a novel approach to health research involving Aboriginal people. The methodology aligned itself with the recently published Canadian Institutes of Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People and the established principles of Ownership, Control, Access, and Possession (OCAP). This article details the process by which collaboration with Aboriginal peoples was achieved, including the involvement of Aboriginal researchers, the development of Provincial Network Committees (PNCs), and communications with First Nations Chiefs and Council. Strengths of this methodology included Aboriginal organizational and community support with a high rate of participation; PNC leadership, which brought together Aboriginal stakeholders with provincial and federal TB program planners; and the exploration of both on and off-reserve transmission factors. Challenges of the methodology included meeting funding agency timelines and expectations given the gradual process of trust development and PNC-reviewed publication; respecting both community and individual participants' autonomy regarding study participation; and political discomfort with strong Aboriginal involvement. While the methodology required a dedicated investment from researchers and funding agencies alike, the process was worthwhile and achieved a high degree of support from its major collaborators: the Aboriginal peoples.     

Spaces of participation: Exploring the characteristics of conducive environments for citizen participation in a community-based health promotion initiative in a disadvantaged neighborhood

Research has shown that community participation in health programmes is vital to ensure positive health outcomes and sustainable solutions. This is often challenged by difficulties to engage socially disadvantaged population groups. Through ethnographic fieldwork in a community initiative in a disadvantaged neighbourhood in Copenhagen, Denmark, we explored which factors contributed to a conducive environment for participation. Data material consists of observation notes taken during fieldwork in a community hub from January 2020 until August 2021 and 19 semi-structured interviews with professional stakeholders and participants. We applied the analytical concept of space to elucidate how the organizational, social, and physical environments played important roles in ensuring possibilities for participation. We termed these environments Spaces of Participation. Our results highlight the importance of ensuring spaces that are flexible, informal, and responsive when engaging those who are hard to reach.     

Factors Influencing the Dietary Status of Participants in the National Nutrition Program for the Elderly

A survey of 73 elderly participants in a nutrition program for the elderly was conducted to determine the influence of selected variables on a) the dietary quality of the sample; b) the frequency of participation in the meal program; and c) on the contribution of the program to the diets of the sample. Research findings were used to suggest possible implications in program planning and implementation so that the program might increase the nutritional benefits to the participants.     

Research on women's health.

The Acting Associate Director for Research on Women's Health describes the background and purpose of the Office of Research on Women's Health, established in September 1990 as part of the National Institutes of Health (NIH). The Office is responsible for assuring that research conducted and/or supported by NIH appropriately addresses issues regarding women's health, and that there is appropriate participation by women in clinical research.     

“I believe this team will change how society views youth in disasters”: the EnRiCH Youth Research Team: a youth-led community-based disaster risk reduction program in Ottawa,Canada

SettingThe Sendai Framework for Disaster Risk Reduction promotes an “all-of-society” approach to disaster risk reduction (DRR). Since 2013, the EnRiCH Research Lab has implemented a community-based, participatory program to promote youth development and engagement in DRR in Ottawa-Gatineau. The EnRiCH Youth Research Team used an existing community education program called the Enrichment Mini-Course Program as a framework to engage youth in DRR. We aim to share the implementation process and lessons learned from this innovative “all-of-society” approach to DRR.InterventionThe EnRiCH Youth Research Team provides high school and university students with a platform to be heard on disaster and climate change issues. Youth are given opportunities to design and lead knowledge dissemination projects intended to educate members of the community about disaster prevention and preparedness. Students have opportunities to connect with academics, governmental and non-governmental organizations, and public health practitioners to share their ideas on youth participation in DRR in Canada.OutcomesTo date, this public health intervention has produced DRR training modules that can be used as curriculum support by teachers, a children’s book on earthquake preparedness, an educational video about youth participation in DRR, and several conference presentations. Members of the team have become well versed in disaster preparedness strategies.ImplicationsThis program has demonstrated that youth can contribute to DRR through knowledge mobilization, and support public education about disaster preparedness. Offering this opportunity at a grassroots level can support participation by youth by allowing flexibility in design and adaptation to individual environmental and social contexts.     

Self-Employment for People with Psychiatric Disabilities: Advantages and Strategies

The Journal of Behavioral Health Services & Research - Self-employment is an alternative to wage employment and an opportunity to increase labor force participation by people with psychiatric...     

Enhancing the effectiveness of clearance for physical activity participation: background and overall process (1) (1) This paper is one of a selection of papers published in the Special Issue entitled Evidence-based risk assessment and recommendations for physical activity clearance, and has undergone the Journal's usual peer-review process

Recent feedback from physical activity (PA) participants, fitness professionals, and physicians has indicated that there are limitations to the utility and effectiveness of the existing PAR-Q and PARmed-X screening tools for PA participation. The aim of this study was to have authorities in exercise and chronic disease management to work with an expert panel to increase the effectiveness of clearance for PA participation using an evidence-based consensus approach and the well-established Appraisal of Guidelines for Research and Evaluation (AGREE) Instrument. Systematic reviews were conducted to develop a new PA clearance protocol involving risk stratification and a decision-tree process. Evidence-based support was sought for enabling qualified exercise professionals to have a direct role in the PA participation clearance process. The PAR-Q+ was developed to use formalized probes to clarify problematic responses and to explore issues arising from currently diagnosed chronic disease or condition. The original PARmed-X tool is replaced with an interactive computer program (ePARmed-X+) to clear prospective PA participants for either unrestricted or supervised PA or to direct them to obtain medical clearance. Evidence-based validation was also provided for the direct role of highly qualified university-educated exercise professionals in the PA clearance process. The risks associated with exercise during pregnancy were also evaluated. The systematic review and consensus process, conforming to the AGREE Instrument, has provided a sound evidence base for enhanced effectiveness of the clearance process for PA participation of both asymptomatic populations and persons with chronic diseases or conditions.     

Needs,Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective

Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N?=?117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.     

Altruism and participation in longitudinal health research? Insights from the Whitehall II Study

Research that follows people over a period of time (longitudinal or panel studies) is important in understanding the ageing process and changes over time in the lives of older people. Older people may choose to leave studies due to frailty, or illness and this may diminish the value of the study. However, people also drop out of studies for other reasons and understanding the motivation behind participation or drop out may prevent further loss of valuable longitudinal information and assist the continuation of longitudinal studies.     

Increasing exercise frequency is associated with health and quality-of-life benefits for older adults

Quality of Life Research - To evaluate whether health-related quality-of-life measures can be improved in a senior population by increasing participation in an exercise program. The study involved...     

Changing GPs' attitudes to research - do N of 1 trials hold the key?

Australia is investing in the Primary Health Care Research, Evaluation and Development (PHCRED) strategy to redress a lack of quality primary care research. This study examines whether direct experience with data that are valuable in managing every day clinical decisions would overcome the interplay of factors that reduce general practitioner participation in research.     

Contribution of travel participation to social integration and life satisfaction after spinal cord injury

BackgroundResearch has found that participation in travel declines for people after spinal cord injury (SCI) because the traumatic injury usually results in impaired physical mobility and sensation, and barriers in the environment make travel more challenging. While travel participation can offer numerous physical, psychological, and emotional benefits, empirical evidence on positive outcomes of travel for people after SCI is scarce in the literature.ObjectiveTo empirically examine the effects of travel participation on social integration and life satisfaction for people with SCI, along with other personal characteristics including income, self-perceived health status, levels of physical independence, occupational activities, and travel barriers.MethodsCross sectional data are collected from 250 patients enrolled in a SCI Model System. Hierarchical regression analyses, followed by mediation analyses, are conducted to assess the effects of travel participation on social integration and life satisfaction.ResultsTravel participation along with occupational activities is shown to significantly impact social integration, with participation in occupational activities partially mediating the relation from travel participation to social integration. The significant effect of travel participation on life satisfaction is fully mediated by social integration. Income and self-perceived health status both significantly contribute to social integration and life satisfaction.ConclusionsTravel participation should be considered as an independent domain that directly impacts the social integration of people with SCI, which in turn enhances their life satisfaction. Systematic interventions with standard protocols for travel-related skill training and assessments procedures are needed for people after SCI.