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Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.

ABSTRACT: OBJECTIVE:Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. METHODS:A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007-2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory-based grid linking context to behaviour change policy categories. MAIN RESULTS:From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). CONCLUSIONS:While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.

SUBMITTER: Ni She E

PROVIDER: S-EPMC6543157 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.

Ní Shé Éidín É Morton Sarah S Lambert Veronica V Ní Cheallaigh Cliona C Lacey Vanessa V Dunn Eleanor E Loughnane Cliona C O'Connor Joan J McCann Amanda A Adshead Maura M Kroll Thilo T

Health expectations : an international journal of public participation in health care and health policy 20190206 3

<h4>Objective</h4>Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research.<h4>Methods</h4>A rapid realist review of the literature that included: (a) a sy ...[more]

PMID: 30729621

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Project description:BackgroundIt is well established that Aboriginal and Torres Strait Islander populations face considerable health inequities, exacerbated by poorer healthcare quality. Patient experience is recognised as a major contributing factor to healthcare quality and outcomes, therefore, enriched knowledge of the patient experiences of Aboriginal and Torres Strait Islander populations is critical to redress health inequities. This review synthesises evidence of the healthcare experiences amongst Aboriginal and Torres Strait Islander patients through a metanarrative synthesis of qualitative literature.MethodsA systematic search strategy was developed and applied to six electronic databases between January 2000 and July 2019. Titles and abstracts were screened before applying the inclusion criteria to full text articles. A meta-narrative synthesis was undertaken.ResultsFifty-four publications were identified from four research traditions; each with a unique conceptualisation of patient experience. Three themes emerged that demonstrate Aboriginal and Torres Strait Islander patient experiences are informed by 1) beliefs about wellbeing and healthcare provision, 2) their level of trust in the healthcare system, and 3) individual and community health system interactions. The findings highlight a range of aspects of patient experience that were important to participating Aboriginal and Torres Strait Islanders in the included studies but not captured currently in health system surveys.ConclusionThis review highlights the influence of beliefs about health and wellbeing on the patient experience amongst Aboriginal and Torres Strait Islander populations in the Australian health system. Patient experiences were informed by past experience and their trust in the health system. The different factors influencing patient experience and the gravity of their influence must be considered in current approaches to capturing patient experience data collection methods.Trial registrationPROSPERO (ID: CRD42019134765 ).

Project description:Humans can quickly approximate how many objects are in a visual image, but no clear consensus has been achieved on the cognitive resources underlying this ability. Previous work has lent support to the notion that mechanisms which explicitly represent the locations of multiple objects in the visual scene within a mental map are critical for both visuo-spatial working memory and enumeration (at least for relatively small numbers of items). Regarding the cognitive underpinnings of large numerosity perception, an issue currently subject to much controversy is why numerosity estimates are often non-veridical (i.e., susceptible to biases from non-numerical quantities). Such biases have been found to be particularly pronounced in individuals with developmental dyscalculia (DD), a learning disability affecting the acquisition of arithmetic skills. Motivated by findings showing that DD individuals are also often impaired in visuo-spatial working memory, we hypothesized that resources supporting this type of working memory, which allow for the simultaneous identification of multiple objects, might also be critical for precise and unbiased perception of larger numerosities. We therefore tested whether loading working memory of healthy adult participants during discrimination of large numerosities would lead to increased interference from non-numerical quantities. Participants performed a numerosity discrimination task on multi-item arrays in which numerical and non-numerical stimulus dimensions varied congruently or incongruently relative to each other, either in isolation or in the context of a concurrent visuo-spatial or verbal working memory task. During performance of the visuo-spatial, but not verbal, working memory task, precision in numerosity discrimination decreased, participants' choices became strongly biased by item size, and the strength of this bias correlated with measures of arithmetical skills. Moreover, the interference between numerosity and working memory tasks was bidirectional, with number discrimination impacting visuo-spatial (but not verbal) performance. Overall, these results suggest that representing visual numerosity in a way that is unbiased by non-numerical quantities relies on processes which explicitly segregate/identify the locations of multiple objects that are shared with visuo-spatial (but not verbal) working memory. This shared resource may potentially be impaired in DD, explaining the observed co-occurrence of working memory and numerosity discrimination deficits in this clinical population.

Project description:Background:High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members' personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members' personal development. Method:Qualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members' personal development and, if so, how, why, and for whom. Results:Three CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members' personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework. Conclusions:Data analysis and consideration of the three CMO configurations suggests a refined middle range theory that 'The use of a portfolio as a framework for learning in a public forum will facilitate members' personal development if they value its use as a framework for learning'. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI. Plain English summary:Public engagement and involvement in health research is now well established and makes a valuable contribution to the research process. However, little is known about its impact on participants. This article investigates how involvement in a data-intensive health research public forum impacts on public forum members, rather than the research process. Personal involvement portfolios were used to support their involvement work and help evaluate if and how involvement in research activities enhanced members' personal development. Taking a realist evaluation approach, 'Context-Mechanism-Outcome' configurations were used to explore how membership of a public forum might enhance public forum members' personal development. The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. However, evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process.

Project description:Introduction Considerable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes. Methods and analysis Guided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes. Ethics and dissemination The use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users. PROSPERO registration number CRD42021250046.

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Dataset Information

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.

Publications

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.

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