Physical activity promotion and adults with intellectual disabilities: A neglected area.

BACKGROUND: The objective was to review physical activity (PA) promotion interventions among individuals with intellectual disability and provide recommendations for increasing PA. METHODS: A systematic mapping review was conducted in which physical activity intervention studies for adults with a disability were identified, selected, and appraised. Data were extracted regarding the study design, results, and authors' recommendations. Data were analyzed using a social-ecological framework. RESULTS: A comprehensive search of the peer reviewed literature yielded 5 studies (3 quantitative, 1 mixed methods, and 1 pre-post delayed). Studies used physical activity promotion strategies at the intrapersonal, interpersonal, organizational, community, and policy levels have been used to date. CONCLUSIONS: Recommendations are presented for researchers and practitioners seeking to increase the level of PA of adults with intellectual disability.

Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient's perspective in a controversial environment.

CONTEXT: The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease. OBJECTIVES: (i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective. METHODOLOGY: All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis. RESULTS: Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change. CONCLUSION: The combination of methods to collect and integrate patients' knowledge and patient associations' perspectives helped develop a comprehensive understanding of a controversial object of evaluation.

A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects.

BACKGROUND: Community-Based Participatory Research (CBPR) is an approach in which researchers and community stakeholders form equitable partnerships to tackle issues related to community health improvement and knowledge production. Our 2012 realist review of CBPR outcomes reported long-term effects that were touched upon but not fully explained in the retained literature. To further explore such effects, interviews were conducted with academic and community partners of partnerships retained in the review. Realist methodology was used to increase the understanding of what supports partnership synergy in successful long-term CBPR partnerships, and to further document how equitable partnerships can result in numerous benefits including the sustainability of relationships, research and solutions. METHODS: Building on our previous realist review of CBPR, we contacted the authors of longitudinal studies of academic-community partnerships retained in the review. Twenty-four participants (community members and researchers) from 11 partnerships were interviewed. Realist logic of analysis was used, involving middle-range theory, context-mechanism-outcome configuration (CMOcs) and the concept of the 'ripple effect'. RESULTS: The analysis supports the central importance of developing and strengthening partnership synergy through trust. The ripple effect concept in conjunction with CMOcs showed that a sense of trust amongst CBPR members was a prominent mechanism leading to partnership sustainability. This in turn resulted in population-level outcomes including: (a) sustaining collaborative efforts toward health improvement; (b) generating spin-off projects; and (c) achieving systemic transformations. CONCLUSION: These results add to other studies on improving the science of CBPR in partnerships with a high level of power-sharing and co-governance. Our results suggest sustaining CBPR and achieving unanticipated benefits likely depend on trust-related mechanisms and a continuing commitment to power-sharing. These findings have implications for building successful CBPR partnerships to address challenging public health problems and the complex assessment of outcomes.

Promising school-based strategies and intervention guidelines to increase physical activity of adolescents.

This narrative review describes the available scientific evidence regarding promising school-based strategies to increase physical activity of adolescents. We conducted a literature search for studies published up to 2011, regarding adolescent physical activity intervention studies that resulted in increased physical activity (regardless of measurement) and reviewed 52 intervention articles and 21 review articles. We identified several promising strategies and grouped into five broad intervention guidelines. These guidelines are as follows: (i) design multi-component interventions that foster the empowerment of members of the school community; (ii) develop improvements to Physical Education curricula as a strategy to promote physical activity to adolescents; (iii) design and implement non-curricular programmes and activities to promote physical activity; (iv) include computer-tailored interventions during the implementation and monitoring of physical activity promotion programmes and (v) design and implement specific strategies that respond to the interests and needs of girls. On the basis of our review of the adolescent physical activity promotion literature, we suggest that these five guidelines should be taken into account in school-based interventions geared towards achieving an increase in adolescent physical activity.

Uncovering the benefits of participatory research: implications of a realist review for health research and practice.

CONTEXT: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. METHODS: Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. FINDINGS: From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. CONCLUSIONS: We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.

Case management in primary care for frequent users of healthcare services with chronic diseases and complex care needs: an implementation and realist evaluation protocol.

INTRODUCTION: Significant evidence in the literature supports case management (CM) as an effective intervention to improve care for patients with complex healthcare needs. However, there is still little evidence about the facilitators and barriers to CM implementation in primary care setting. The three specific objectives of this study are to: (1) identify the facilitators and barriers of CM implementation in primary care clinics across Canada; (2) explain and understand the relationships between the actors, contextual factors, mechanisms and outcomes of the CM intervention; (3) identify the next steps towards CM spread in primary care across Canada. METHODS AND ANALYSIS: We will conduct a multiple-case embedded mixed methods study. CM will be implemented in 10 primary care clinics in five Canadian provinces. Three different units of analysis will be embedded to obtain an in-depth understanding of each case: the healthcare system (macro level), the CM intervention in the clinics (meso level) and the individual/patient (micro level). For each objective, the following strategy will be performed: (1) an implementation analysis, (2) a realist evaluation and (3) consensus building among stakeholders using the Technique for Research of Information by Animation of a Group of Experts method. ETHICS AND DISSEMINATION: This study, which received ethics approval, will provide innovative knowledge about facilitators and barriers to implementation of CM in different primary care jurisdictions and will explain how and why different mechanisms operate in different contexts to generate different outcomes among frequent users. Consensual and prioritised statements about next steps for spread of CM in primary care from the perspectives of all stakeholders will be provided. Our results will offer context-sensitive explanations that can better inform local practices and policies and contribute to improve the health of patients with complex healthcare needs who frequently use healthcare services. Ultimately, this will increase the performance of healthcare systems and specifically mitigate ineffective use and costs.

Organizational participatory research: a systematic mixed studies review exposing its extra benefits and the key factors associated with them.

BACKGROUND: In health, organizational participatory research (OPR) refers to health organization members participating in research decisions, with university researchers, throughout a study. This non-academic partner contribution to the research may take the form of consultation or co-construction. A drawback of OPR is that it requires more time from all those involved, compared to non-participatory research approaches; thus, understanding the added value of OPR, if any, is important. Thus, we sought to assess whether the OPR approach leads to benefits beyond what could be achieved through traditional research. METHODS: We identified, selected, and appraised OPR health literature, and at each stage, two team members independently reviewed and coded the literature. We used quantitative content analysis to transform textual data into reliable numerical codes and conducted a logistic regression to test the hypothesis that a co-construction type OPR study yields extra benefits with a greater likelihood than consultation-type OPR studies. RESULTS: From 8873 abstracts and 992 full text papers, we distilled a sample of 107 OPR studies. We found no difference between the type of organization members' participation and the likelihood of exhibiting an extra benefit. However, the likelihood of an OPR study exhibiting at least one extra benefit is quadrupled when the impetus for the study comes from the organization, rather than the university researcher(s), or the organization and the university researcher(s) together (OR = 4.11, CI = 1.12-14.01). We also defined five types of extra benefits. CONCLUSIONS: This review describes the types of extra benefits OPR can yield and suggests these benefits may occur if the organization initiates the OPR. Further, this review exposes a need for OPR authors to more clearly describe the type of non-academic partner participation in key research decisions throughout the study. Detailed descriptions will benefit others conducting OPR and allow for a re-examination of the relationship between participation and extra benefits in future reviews.

Case management in primary care among frequent users of healthcare services with chronic conditions: protocol of a realist synthesis.

INTRODUCTION: A common reason for frequent use of healthcare services is the complex healthcare needs of individuals suffering from multiple chronic conditions, especially in combination with mental health comorbidities and/or social vulnerability. Frequent users (FUs) of healthcare services are more at risk for disability, loss of quality of life and mortality. Case management (CM) is a promising intervention to improve care integration for FU and to reduce healthcare costs. This review aims to develop a middle-range theory explaining how CM in primary care improves outcomes among FU with chronic conditions, for what types of FU and in what circumstances. METHODS AND ANALYSIS: A realist synthesis (RS) will be conducted between March 2017 and March 2018 to explore the causal mechanisms that underlie CM and how contextual factors influence the link between these causal mechanisms and outcomes. According to RS methodology, five steps will be followed: (1) focusing the scope of the RS; (2) searching for the evidence; (3) appraising the quality of evidence; (4) extracting the data; and (5) synthesising the evidence. Patterns in context-mechanism-outcomes (CMOs) configurations will be identified, within and across identified studies. Analysis of CMO configurations will help confirm, refute, modify or add to the components of our initial rough theory and ultimately produce a refined theory explaining how and why CM interventions in primary care works, in which contexts and for which FU with chronic conditions. ETHICS AND DISSEMINATION: Research ethics is not required for this review, but publication guidelines on RS will be followed. Based on the review findings, we will develop and disseminate messages tailored to various relevant stakeholder groups. These messages will allow the development of material that provides guidance on the design and the implementation of CM in health organisations. TRIAL REGISTRATION NUMBER: Prospero CRD42017057753.

Decisional needs assessment of patients with complex care needs in primary care: a participatory systematic mixed studies review protocol.

INTRODUCTION: Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers). METHODS AND ANALYSIS: This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs' qualitative decisional need assessment (semistructured interviews and focus group with stakeholders). ETHICS AND DISSEMINATION: This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs' decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network. PROSPERO REGISTRATION NUMBER: CRD42015020558.

Critical reflections on realist review: insights from customizing the methodology to the needs of participatory research assessment.

Realist review has increased in popularity as a methodology for complex intervention assessment. Our experience suggests that the process of designing a realist review requires its customization to areas under investigation. To elaborate on this idea, we first describe the logic underpinning realist review and then present critical reflections on our application experience, organized in seven areas. These are the following: (1) the challenge of identifying middle range theory; (2) addressing heterogeneity and lack of conceptual clarity; (3) the challenge of appraising the quality of complex evidence; (4) the relevance of capturing unintended outcomes; (5) understanding the process of context, mechanism, and outcome (CMO) configuring; (6) incorporating middle-range theory in the CMO configuration process; and (7) using middle range theory to advance the conceptualization of outcomes - both visible and seemingly 'hidden'. One conclusion from our experience is that the degree of heterogeneity of the evidence base will determine whether theory can drive the development of review protocols from the outset, or will follow only after an intense period of data immersion. We hope that presenting a critical reflection on customizing realist review will convey how the methodology can be tailored to the often complex and idiosyncratic features of health research, leading to innovative evidence syntheses.

Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review.

BACKGROUND: Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships. METHODS: We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods. RESULTS: The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods. DISCUSSION: The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.