Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract

Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice.

• Implications for Rehabilitation

• Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs.

• Engagement strategies need to be better reported and evaluated in the literature.

• Engagement facilitate uptake of research findings by increasing stakeholders’ awareness of the evidence, the resources available and their own ability to act upon a situation.

• Factors influencing opportunities for stakeholder engagement need to be better understood.

     

Parents with learning disabilities: a review of the literature

Parenting by learning disabled persons is a highly emotive issue, eliciting arguments from both extremes. Many of the arguments against such parenting have their basis in eugenic theory, whereas those in favour, often cite human rights declarations, and philosophies such as 'normalization'. This review of the literature describes the chronological development of theory on the subject, spanning 1900 to the present day. It has become clear that, whereas parents with learning difficulties may be more predisposed to having problems, they can indeed perform as adequate parents, given appropriate training and support. This paper traces the development of current theory, through an in-depth discussion of the available literature.     

The size, extent and nature of the learning disability nursing research base: a systematic scoping review

Background

A research base should be of sufficient quality and quantity to inform nursing practice. It must allow nurses to access information about clients’ needs and to identify effective strategies for meeting those needs. This paper presents the findings of a scoping review of ‘learning disability nursing research’. The review aimed to determine whether there is a research base sufficient to support learning disability nursing practice.

Method

We undertook searches of the Cochrane Library and electronic databases (Medline, Psychinfo, Embase, CINAHL and British Nursing Index) for the years 1996-2006. Full references and abstracts were downloaded for papers returned. Papers considered relevant to the topic of the review were organised into three categories according to whether the main focus of the research was people with learning disabilities, carers or family members, or nurses. For each paper, information about the locality of the research, the topic of the research, design/method and sample size was extracted.

Findings

We identified 180 relevant research studies, most of which made use of convenience samples of less than one hundred people. Very few studies evaluated the clinical impact of nursing interventions or the delivery of care by learning disability nurses. A small number of studies examined the impact or patient experiences of nurse-led interventions. These tend to small-scale evaluations of new service initiatives, such as the management of behavioural problems. Overall there was an absence of strong evidence about the effectiveness of specific nursing interventions.

Conclusions

The extent of learning disability nursing research is limited in quantity and it is difficult to draw comparisons across research studies. Much of the available evidence is drawn from small-scale evaluations; which may provide useful guidance and inspiration for service development but do not, in themselves, constitute a sufficient body of research evidence to support learning disability nursing practice.     

User and carer involvement in the training and education of health professionals: a review of the literature

BACKGROUND: Health policy requires consumer involvement in services, research and education but little is known about how consumers are being involved in healthcare education, the effect on learning and practice, nor how involvement initiatives are being evaluated. OBJECTIVES: To describe methods of involving consumers in healthcare education, discuss ways in which initiatives have been evaluated, and identify areas for development in education, practice and research. DESIGN: All papers reporting specific initiatives involving consumers in health care worker training and education were included. Viewpoint articles and studies of consumers training consumers were excluded. DATA SOURCES: Cinahl, Medline, Assia, PsycINFO, British Nursing Index, Social Science Citation Index, citations from reference lists, relevant websites and personal communication with key people known to be working in this area. REVIEW METHODS: A narrative approach was taken with categorisation of data to reflect objectives of selected studies; method of involvement; process issues and evaluation. RESULTS: Thirty-eight papers were included; most provide small-scale qualitative studies of mental health service users and focus on process rather than outcome. Various methods of involvement are described and consumers consistently prioritise the need for training in interpersonal skills over 'technical' skills. There is little research into organisational strategies and no studies investigate the effect of consumer involvement on practice. Two studies indicated that students exposed to consumer involvement demonstrate more empathic understanding and better communication skills. CONCLUSIONS: There is tentative evidence that consumer involvement in training enhances workers' skills in the manner prioritised by consumers. However, if consumer involvement in training and education is to facilitate services that reflect the priorities of the people using them, it must be developed in partnership with service providers; further research is needed to explore the impact of consumer involvement and to track the development of organisational consumer involvement strategies, also systems for supporting consumers need to be established, including training for both consumers and staff.     

The use and application of assistive technology to promote literacy in early childhood: a systematic review

The Individuals with Disabilities Act was implemented in 1975 to assure that all children aged 0–21 years old have access and the right to an equal education. However, young children with disabilities continue to need additional support to meet the reading readiness standards as outlined in The No Child Left Behind legislation (2004). Although all children benefit from readiness skills, it is essential for children with special needs. With the technology boom of the past decade, assistive technology (AT) has been used increasingly to enhance emerging literacy skills. In order to identify current trends in the use of AT as a means to enhance emergent literacy skills in young children with disabilities, a systematic review of the literature was undertaken. The findings from this review support the scarcity of empirical research demonstrating the benefit of AT to promote emergent literacy with young children with disabilities. We also found a need for evidence supporting education approaches for the proper use of AT in early childhood literacy as well as little family knowledge regarding the implementation and instructional use of AT.     

Service user involvement in pre-registration mental health nurse education classroom settings: a review of the literature

ACCESSIBLE SUMMARY: ? Service user involvement is an important part of pre-registration nursing programmes, as it can give students the opportunity to learn from users about their experiences of health and illness, but so far there have been limited studies in this area. ? This literature review provides an opportunity to explore how service user involvement in classroom settings can impact on student learning, and describes methods of best practice. ? Further research is needed to understand the influence of service user involvement on student nurses' clinical practice. ABSTRACT: Service user involvement in pre-registration nurse education is now a requirement, yet little is known about how students engage with users in the classroom, how such initiatives are being evaluated, how service users are prepared themselves to teach students, or the potential influence on clinical practice. The aim of this literature review was to bring together published articles on service user involvement in classroom settings in pre-registration mental health nurse education programmes, including their evaluations. A comprehensive review of the literature was carried out via computer search engines and the Internet, as well as a hand search of pertinent journals and references. This produced eight papers that fitted the inclusion criteria, comprising four empirical studies and four review articles, which were then reviewed using a seven-item checklist. The articles revealed a range of teaching and learning strategies had been employed, ranging from exposure to users' personal stories, to students being required to demonstrate awareness of user perspectives in case study presentations, with others involving eLearning and assessment skills initiatives. This review concludes that further longitudinal research is needed to establish the influence of user involvement in the classroom over time.     

The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

BackgroundPeople with an intellectual disability are a vulnerable group during COVID-19 due to multi-morbidity, frailty, underlying conditions/health problems, social circumstances and limitations in understanding. This places them at greater risk of more severe outcomes from COVID-19.ObjectiveTo chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability and their carers reported in the research.MethodsA scoping review method was used to review literature published across eight databases in 2020 and included manual searches of reference lists of included articles.ResultsSixteen studies were selected for inclusion. The findings highlight that professionals, people with intellectual disability and their carers were keen to comply with pandemic related public health guidance. However, implementing infection prevention and control measures in certain contexts for people with intellectual disability was challenging. Thereby a rights-based, person-centred approach to care is essential and professionals need to extend their understanding and practice of collaborative working to include people with intellectual disability and their family/carers. The findings highlight that compliance with public health guidance and infection control measures can be difficult for people with intellectual disability to implement.ConclusionsThere is limited good quality robust research on COVID-19 and people with intellectual disability and/or their carers experiences.     

Use of single-subject research designs in seating and wheeled mobility research: a scoping review

Abstract

Background: Evidence-based practice (EBP) in seating and wheeled mobility practice is often hindered by a dearth of published research.

Purpose: The purpose of this review was to explore and critically appraise the use of single-subject research designs (SSRDs) in seating and wheeled mobility studies published between January 1995 and May 2018.

Study Selection: Primary source, peer-reviewed SSRDs focused on exploring the impact of a seating and wheeled mobility intervention were included in the review.

Data Extraction: Relevant data extraction, determination of level of evidence, evaluation of methodological rigor, and assessment of the risk of bias were each independently performed.

Data Synthesis: The review yielded 19 studies (2 Level III, 15 Level IV, and 2 Level V). A majority of these studies incorporated a withdrawal-type of SSRD and involved subjects representing patient populations with seating and wheeled mobility needs. Methodological rigor/quality features most commonly absent in the included studies included: blinding/masking, inter-rater or intra-rater reliability, >5 data points in each phase, planned replication (≥3 subjects), procedural fidelity methods, randomization, stability of the data during baseline, statistical analyses and use of subject selection criteria. The limited number of published SSRDs, combined with the lower levels of evidence (Levels III–V) provided by these studies, indicates that the use of SSRDs in seating and wheeled mobility research is in the early stages of development.

Conclusions: Increasing the methodological quality and rigor as well as reporting methods in future SSRDs involving seating and wheeled mobility interventions may help to support EBP in this area.

• Implications for Rehabilitation

• Single-subject research designs (SSRDs) offer both researchers and clinicians the opportunity to contribute to the existing knowledge base in ways that reflect actual clinical practice.

• SSRDs provide flexibility in adapting and modifying seating and wheeled mobility-related assistive technology devices to meet the individual needs of specific subjects.

• SSRDs preserve individual responses to seating and wheeled mobility-related assistive technology devices.

• SSRDs may help to enhance evidence-based practice (EBP) in seating and wheeled mobility practice by spanning the divide between research and practice.

• Increasing the methodological quality and rigor as well as reporting methods in future SSRDs may help to support EBP in seating and wheeled mobility practice.

     

Racial and ethnic disparities in stroke outcomes: a scoping review of post-stroke disability assessment tools

Purpose: To identify how post-stroke disability outcomes are assessed in studies that examine racial/ethnic disparities and to map the identified assessment content to the International Classification of Functioning, Disability, and Health (ICF) across the time course of stroke recovery.

Methods: We conducted a scoping review of the literature. Articles published between January 2001 and July 2017 were identified through Scopus, PubMed, CINAHL, and PsycINFO according to predefined inclusion and exclusion criteria.

Results: We identified 1791 articles through database and hand-searching strategies. Of the articles, 194 met inclusion criteria for full-text review, and 41 met inclusion criteria for study inclusion. The included studies used a variety of outcome measures encompassing domains within the ICF: body functions, activities, participation, and contextual factors across the time course of stroke recovery. We discovered disproportionate representation among racial/ethnic groups in the post-stroke disability disparities literature.

Conclusions: A wide variety of assessments are used to examine disparities in post-stroke disability across the time course of stroke recovery. Several studies have identified disparities through a variety of assessments; however, substantial problems abound from the assessments used including inconsistent use of assessments, lacking evidence on the validity of assessments among racial/ethnic groups, and inadequate representation among all racial/ethnic populations comprising the US.

• Implications for Rehabilitation

• An enhanced understanding of racial/ethnic disparities in post-stroke disability outcomes is inherently important among rehabilitation practitioners who frequently engage with racial/ethnic minority populations across the time course of stroke recovery.

• Clinicians should carefully consider the psychometric properties of assessment tools to counter potential racial bias.

• Clinicians should be aware that many assessments used in stroke rehabilitation lack cultural sensitivity and could result in inaccurate assessment findings.

     

Provision of rehabilitation services for children with disabilities living in low- and middle-income countries: a scoping review

Background: Childhood disability is a growing global health priority. The purpose of this scoping review was to identify and summarize rehabilitation interventions used to support children with disabilities in low- and middle-income countries.

Methods: This scoping review involved a systematic search of electronic databases using a combination of subject headings and/or keywords related to child disability, rehabilitation, and low- and middle-income countries. Charting involved an iterative process whereby the full text of articles meeting the inclusion criteria were abstracted using a charting form. Data were charted according to pre-selected and emerging characteristics deemed relevant to the scoping review’s purpose.

Results: Eighty-one articles were included in the final analysis. Forty-three articles explored the use of screening and/or diagnostic tools in identifying children with disabilities in low and middle income countries, and 38 articles evaluated rehabilitation services for these children.

Conclusions: A number of rehabilitation strategies are available that have the potential to improve the identification of and outcomes for children with disabilities in low and middle income countries. Future research ought to advance the development, implementation, and evaluation of training programs for non-rehabilitation specialists (e.g., doctors, nurses, and teachers), non-specialist community members (e.g., community health workers), and caregivers in the area of rehabilitation, and evaluate the effectiveness of rehabilitation interventions in improving participatory outcomes and quality of life for children with disabilities.

• Implications for Rehabilitation

• Additional research is needed to understand the influence of rehabilitation on personal factors (e.g., self-efficacy and quality of life) and participation for children with disabilities.

• There is limited availability of experienced rehabilitation service providers, especially in rural areas, warranting additional research into the development and evaluation of non-specialist training programs, and the integration of rehabilitation concepts across health workforce education programs.

• Researchers from low and middle income countries appear to be underrepresented in published rehabilitation research, indicating a need to further promote the inclusion of this group through community-based participatory research.

     

Mismatches in the production of a scoping review: Highlighting the interplay of (in)formalities

The move towards evidence‐based medicine has generated rapid growth in reviews of research literature. The scoping review is one of the new literature reviews that has emerged from traditional systematic reviews. A scoping review aims to map the literature on a particular topic or research area. As scoping reviews become more popular, methods for conducting scoping reviews are rapidly increasing. In light of these recent developments, this paper investigates how complex scoping reviews are conducted. As an analytical framework, we draw on previous work about (in)formalities (ie, the interplay of formalities and informal judgments in scientific research). We show how the process of constructing a population, intervention, comparison, and outcome (PICO), searching and selecting relevant literature, requires informal deliberations, judgments, and choices that are not considered in the formal methodology used when conducting scoping reviews. This paper asks the following questions: What could be learned from this empirical case of conducting a scoping review by applying theoretical insights about (in)formalities? What are the possible implications for future development of scoping reviews? We provide three suggestions. First, PICO served as a starting point for the review process, supported decisions continuously during the process, and served as an image of the end product of the scoping review. We suggest that these three roles need to be considered to a larger extent in the future development of scoping review methods. Second, the contextual constraints of scoping reviews such as time, resources, and the jurisdiction of the commissioning agency need to be made explicit in the reporting of scoping reviews. Third, the findings in this paper indicate that the evolving emphasis on formalization in both the methods the reporting practices of scoping reviews could benefit if complemented with a more pronounced role for informalities. In addition, highlighting the informalities in scoping review methods may serve to create more realistic expectations of the methods, the validity, and the potentials of scoping reviews.     

User involvement in clinical audit: a review of developments and issues of good practice*

There have been considerable political and organizational moves to involve ‘consumers’ (patients, carers, service users, potential users, local communities and the public at large) in the provision, planning and monitoring of health services. Such developments beg the question ‘what constitutes good practice in user involvement?’. Taking user views into account relates not only to obtaining feedback on ’hotel’ aspects of care (issues such as food and cleanliness) but also to the potential for patient input to clinical audit and the standards by which care itself is measured. Recent policy statements specifically advocate involving users in the process and product of clinical audit. In practice, ‘involvement’ has meant anything from passing on information to full and active participation in partnership with professionals. This paper outlines some of the issues raised in the published literature on user involvement in clinical audit. Suggesting that real involvement refers to users as active participants, not passive recipients, the paper documents the increasing policy commitment to user involvement and considers issues that influence how the rhetoric is put into practice.     

表面肌电图在帕金森病中的应用

目前尚缺乏客观有效的检查技术对帕金森病进行诊断和评估。近年来表面肌电图(sEMG)作为一种客观定量的评估方法,已逐渐开始应用于帕金森病神经肌肉状态和运动功能的研究中。本文对近10 年来的相关文献进行综述。     

Significant elements of community involvement in participatory action research: evidence from a community project

Significant elements of community involvement in participatory action research: evidence from a community project ¶Participatory action research (PAR) has been heralded as an important research methodology to address issues of research relevance, community involvement, democracy, emancipation and liberation. Increasingly, nurse researchers are turning to PAR as a method of choice. Although nursing interest in PAR is expanding little is known about how to successfully involve the community in research. This article attends to this dearth of information by presenting the results of a study investigating the significant elements of community involvement in PAR. Through the use of qualitative research methods, five themes emerged that describe the community participation process: (a) planning for participation, (b) the structural components of community participation, (c) living the philosophy, (d) enhancing the credibility, and (e) the type of leadership required to facilitate community participation. It is hoped that by sharing these results others may consider the knowledge gleaned from this project as they plan and proceed with the challenges and rewards inherent in PAR.     

Collaboration, user involvement and education: a systematic review of the literature and report of an educational initiative

Collaboration is advocated widely through government policy as part of enormous change within the Health Service (Department of Health 1998, 2000b). Directives from policy regarding collaboration impact onto organizations, professions and individuals including users of the service. A literature review suggests that there would appear to be limited anecdotal, discursive or rigorous evidence available on collaboration at all levels including involving users. However, literature does demonstrate a mounting body of evidence that collaboration with users is being promoted as a way of working. This paper reviews the literature around collaboration and user involvement in the context of cancer care. Findings suggest that there is confusion of terminology around collaboration and user involvement. Benefits of and barriers to user involvement are identified and these are explored in the context of caring for the patient with cancer. An evaluation of a team-based educational initiative designed to help health-care professionals working within the cancer arena to explore ways to collaborate with users is presented. Findings suggest that education may be one way to develop collaboration between health-care professionals and service users.     

Delusional misidentification in Parkinson’s disease: report of two cases and a review

Syndromes of delusional misidentification consist of disordered familiarity and have been reported in diverse diagnoses, including Parkinson’s disease. Although the most common delusional misidentification is Capgras syndrome, in which the sufferer believes a familiar person has been replaced by an identical imposter, other forms have been also described. The pathogenesis of delusions of misidentification appears to require dysfunction of or connection to a left cerebral cortical area involved in recognition of familiarity, and also right frontal cortex serving belief evaluation. Two cases of Parkinson’s disease with an unusual delusional misidentification, intermetamorphosis, are presented, along with their improvement with pimavanserin, a novel atypical antipsychotic medication.