Digital and Community-Driven Strategies for Enhancing Social Participation in Adults with Neurodegenerative Conditions: Protocol for a Scoping Review of Current Interventions

doi:10.21203/rs.3.pex-2635/v1

Method Article

Digital and Community-Driven Strategies for Enhancing Social Participation in Adults with Neurodegenerative Conditions: Protocol for a Scoping Review of Current Interventions

https://doi.org/10.21203/rs.3.pex-2635/v1

This work is licensed under a CC BY 4.0 License

This protocol has been posted on Protocol Exchange, an open repository of community-contributed protocols sponsored by Nature Portfolio. These protocols are posted directly on the Protocol Exchange by authors and are made freely available to the scientific community for use and comment.

Version 1

posted

You are reading this latest protocol version

Objective: This scoping review synthesises evidence on initiatives that promote social participation among adults with neurodegenerative conditions, focusing on social care, community support, and digital technologies that mitigate loneliness and isolation.

Introduction:Neurodegenerative conditions often reduce social participation, exacerbating isolation and affecting well-being. Despite efforts to leverage support resources, a comprehensive understanding of existing interventions is lacking. The[FW1] review aims to map the scope of interventions and identify literature gaps.

Inclusion Criteria: The review includes studies on adults with neurodegenerative conditions focusing on enhancing social participation and connectedness, with outcomes related to reducing loneliness and isolation. It considers articles on social care, community support, and digital technology post-2008, excluding studies not addressing direct interventions, unrelated to neurodegenerative conditions, or not in English.

Methods: Employing a recognised scoping review method by Arksey and O’Malley, we searched the databases MEDLINE, SCOPUS, CINAHL, PsycINFO, and ProQuest from May 2008 onwards. The process includes screening titles and abstracts of articles, grey literature, and reports, followed by full-text reviews. Data extraction centres on intervention type, context, and outcomes. Thematic mapping will be accompanied by a narrative synthesis presenting the findings.

Discussion: Insights from this review will inform a subsequent study including surveys and interviews, enhancing our understanding of effective support mechanisms for enhancing social participation. By identifying gaps, this review lays groundwork for future research into co-designing support frameworks for individuals with neurodegenerative conditions

Community support

Digital technology

Neurological condition

Social connectedness

Social participation

In light of the evidence underscoring the critical role of support mechanisms and digital technologies in enhancing social participation and ameliorating loneliness among individuals with neurodegenerative conditions (Turcotte et al. 2018), this scoping review aims to systematically explore the literature within this domain. The review is particularly focused on identifying the available activities designed to foster participation and social connectedness, alongside the application of digital technologies as a means to support engagement and mitigate feelings of isolation. The need for this line of research is rooted in the recognition of the profound impact that neurodegenerative disorders can have on individuals' ability to engage with their communities and maintain social connections (Tseng and Chang 2017) which are essential components of overall well-being and quality of life (Jenkins et al. 2017).

Rationale

Neurodegenerative conditions, such as Parkinson's disease, Huntington's disease, Multiple Sclerosis, Motor Neuron Disease, and Alzheimer's disease, represent a significant public health challenge within the United Kingdom, and specifically in Wales, where Parkinson’s disease alone affects roughly one in 500 people (National Health Service Wales 2023). These conditions are characterised by a standard trajectory of progressive physical (Bloem et al. 2021) and social decline (Baumann et al. 2020), which severely impacts patients' independence, mobility, and social engagement. Given their continued growth in prevalence, and the profound implications for affected individuals, there is a pressing need to explore interventions that can support and enhance social participation and reduce loneliness within this population. Digital technologies, owing to their adaptability and wide reach, offer promising avenues for addressing these challenges faced by individuals with neurodegenerative conditions, by facilitating access to support and enabling participation beyond any physical or societal constraints imposed due to their condition (Senbekov et al. 2020).

Objectives

The primary objective of this scoping review is to identify what is currently available to support participation and social connectedness, among individuals with neurodegenerative disorders such as Parkinson's disease, Huntington's disease, Multiple Sclerosis, Motor Neuron Disease, and Alzheimer's disease. The secondary aim of this review is to identify whether the use of digital technologies to reduce loneliness among individuals with neurodegenerative disorders is currently being widely accepted to promote social connectedness. Holistically, this review seeks to identify the types of activities and digital interventions available and highlight gaps in the current research landscape.

Methods

The methodological framework of this review is guided by the work of Arksey and O’Malley (2005), which outlines a 5-step approach to conducting scoping reviews. This framework begins with identifying the research question, crucial for defining the scope and focus of the review. Following this, a comprehensive strategy for identifying relevant studies is developed, involving the selection of databases, keywords, and inclusion/exclusion criteria to ensure a thorough search of the literature. The third step involves study selection, where titles and abstracts are screened against the inclusion criteria, followed by full-text review of selected articles. The fourth step encompasses charting the data, wherein key information from the included studies is systematically extracted and organised into a format that facilitates comparison and synthesis. The final step involves collating, summarising, and reporting the results, where findings are synthesised to provide an overview of the existing literature, identify gaps in knowledge, and suggest areas for further research. Arksey and O’Malley (2005) do not recommend screening the references of included studies in their methodological framework for conducting scoping reviews; therefore, this practice will not be implemented in our review.

As such, a comprehensive search strategy will be employed, targeting key databases including MEDLINE, SCOPUS, PsycINFO, CINAHL and ProQuest. Searches on MEDLINE and PsycINFO will be conducted through the host sever ‘OVID’, and searches on CINAHL will be through the host server EBSCO. Preliminary searches in MEDLINE, and Scopus have confirmed the absence of current systematic or scoping reviews directly addressing our focal areas within the context of the specified neurodegenerative conditions. Search terms will be limited to the title of the articles, and include specific terms related to conditions, participation, and intervention type, and can be found in the supplementary files, displayed as 'table 1'.

The full search string, where TI indicates a title search, is as follows;

TI ( "Parkinson* Disease" OR "Huntington* Disease" OR "Multiple Sclerosis" OR "Motor Neuron? Disease" OR "Alzheimer* Disease" OR Ataxia OR Dystonia OR Neurological OR "Neurological Condition" OR "Neurological Disease" OR Neurodegenerative OR “Neurodegenerative Condition” OR “Neurodegenerative Disease”) AND TI ( Leisure OR “Physical Activit*” OR “Activit* Of Daily Living” OR Participat* OR Interact* OR Talk* OR Engage* OR Connect* OR Recreation* OR "Social Participation" OR Lonely OR Loneliness OR Alone OR Connected* OR Isolated OR "Social Connection" OR "Social Interaction" OR "Social Isolation" OR "Social Network" OR "Social Engagement" OR Engagement OR "Social Wellbeing" OR "Psychosocial Wellbeing" OR Wellbeing OR Psychosocial ) AND TI ( Intervention* OR Program* OR Course* OR Group OR Class OR Community OR "Social Program*" OR "Social Group" OR Digital OR Remote OR EHealth OR Online OR Virtual OR Electronic OR Internet OR Telehealth)

Inclusion Criteria

Studies will be selected according to the following criteria:

Population: Adults diagnosed with Neurodegenerative conditions; including, but not limited to, Parkinson's disease, Huntington's disease, Multiple Sclerosis, Motor Neurone Disease, Ataxia, Dystonia, or Alzheimer's disease.
Concept: Interventions or observations related to activities promoting social participation and social connectedness, and the use of digital technologies to support this engagement and reduce loneliness.
Context: Interventions conducted in community settings, or via digital platforms.

Justification for Scoping Review

A scoping review methodology is deemed most appropriate for this investigation due to the exploratory nature of the objectives and the anticipated heterogeneity of the interventions and outcomes. This approach will facilitate a broad examination of the field, enabling the identification of the range and nature of evidence available, which is crucial for informing future research directions and clinical practices.

Conclusion and Review Objective

Given the growing prevalence of neurodegenerative disorders in the UK, and their impact on social and physical functioning, there is a critical need to explore innovative strategies to support affected individuals. The objective of this scoping review is to assess the extent of literature on activities and digital technologies aimed at enhancing social participation and reducing loneliness among individuals with neurodegenerative conditions. By doing so, the review aims to illuminate effective practices and identify key themes requiring further investigation to optimise support for this vulnerable population.

Review question

In line with the objectives of this scoping review, the primary question is structured according to the PCC framework (Pollock et al. 2023) as follows:

"What types of activities (Concept) are available and have been documented to support participation and social connectedness (Concept) for adults (Population) living with neurodegenerative conditions (Population) within community settings (Context)?"

This primary question will be supplemented by the following sub-question to address the secondary aim of the review:

"Are digital technologies (Concept) being utilised for these activities to enhance participation and reduce loneliness for adults with neurodegenerative conditions (Population) in various settings (Context)?"

Inclusion criteria

Participants:

This review will include studies focusing on adults aged 18 and over who are living with neurodegenerative conditions. Neurodegenerative conditions will encompass a range of disorders including, Huntington’s disease, Parkinson’s disease, Ataxia, Dystonia, Alzheimer’s disease, Multiple Sclerosis, and Motor neuron disease. Studies that focus on paediatric populations, or adults without diagnosed neurodegenerative conditions, will be excluded. Studies that include conditions beyond neurodegenerative diseases will still be considered for inclusion and, if possible, data will be disentangled.

Concept:

Concept of interest is the range of activities designed to support participation and social connectedness, aimed specifically at reducing loneliness and isolation. Activities may include, but are not limited to, physical activities, recreational programs, social gatherings, peer support groups, and the use of digital technologies as facilitators for such interactions. Although definitions of social participation may vary, the International Classification of Functioning, Disability and Health (ICF) (World Health Organisation 2001) defines social participation as 'involvement in a life situation' especially in relation to community, social and civic life. So, this definition will serve as an umbrella definition, underpinning our assessment of social participation in the included activities.

Context:

The context of this review encompasses community settings which may include, but are not limited to, local community centres, sports clubs, social clubs, residential care, and supported livig facilities. The review will consider studies from any geographic location and will be sensitive to cultural and sub-cultural factors that may influence the design, delivery, and outcomes of the activities. Studies that are based in acute hospital settings, inpatient rehabilitation, or other healthcare-specific environments will be excluded due to the focus of the scoping review being on community-based interventions and supports.

Types of Sources:

The scoping review will consider a range of study designs, including:

Experimental and quasi-experimental study designs: randomised controlled trials, non-randomised controlled trials, before and after studies, and interrupted time-series studies
Observational studies: prospective and retrospective cohort studies, case-control studies, and analytical cross-sectional studies
Descriptive studies: case series, individual case reports, and descriptive cross-sectional studies.
Qualitative studies: phenomenology, grounded theory, ethnography, qualitative description, action research, and feminist research.
Systematic reviews will be screened, and any articles used in the review that meet the inclusion criteria and address the research questions, that have not already been identified in searches, will be included.
Additionally, grey literature that provides relevant insights into the review concepts will also be included.

Studies that are purely theoretical without empirical data will be excluded due to the overarching aim of the review being to identify what is currently being used in real world settings. Moreover, articles that are not published in English will be excluded as the research team do not have the resources to translate the articles.

Methods

The proposed scoping review will be conducted in accordance with the JBI methodology for scoping reviews (Peters et al. 2020), the guidelines stipulated in the JBI Manual for Evidence Synthesis.

Search strategy

A two-step search strategy will be utilised, comprising of an initial search, and then a refined strategy, locating both published and unpublished work. Initial searches on MEDLINE and SCOPUS utilised the keywords "exercise," "social participation," "neurological conditions," "Parkinson’s," "

Huntington’s," "multiple sclerosis," "Alzheimer’s," "motor neuron disease," "community support," and "loneliness.". However, the search was very broad and pulled many irrelevant studies.

So, to further refine the strategy, truncations were added, such as, but not limited to, "Parkinson* disease", “Huntington* disease” and "motor neuron? Disease". The use of an asterisk is useful where a term may have different word endings, such as Huntington, Huntingtons and Huntington’s; the asterisk will search for all word endings. Moreover, extra terms such based on social participation and intervention types were incorporated based on recommendations from a subject librarian at the Cardiff University School of Healthcare Sciences. The final comprehensive search strategy, underpinned by the initial keywords and refined with additional index terms, truncations and synonyms, was collaboratively developed with the subject librarian to ensure robustness of the search strategy. This meticulous strategy was subsequently adapted to and will be applied across several databases, including SCOPUS, CINAHL (via EBSCO), PsycINFO (via OVID), and MEDLINE (via OVID), with the complete search strategy details for MEDLINE outlined in supplementary files, under 'Appendix I'.

The scoping review will selectively include studies published in the English language. This decision is grounded in practical considerations, primarily the constraints associated with the translation of non-English studies which may entail resource-intensive processes and potential for inaccuracies. Moreover, as qualitative studies will be included in this review, using translation software may result in miscommunications between the true essence of what was meant, and what the translation software produces. However, it is acknowledged that this language restriction may introduce a bias by omitting relevant studies published in other languages. The impact of this limitation on the review’s findings will be discussed in the final report. The temporal scope of the search has been established from the year 2008 onwards. This starting point is significant as it coincides with the ratification, and implementation, of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations 2006). The convention represents a shift in the domain of disability rights, advocating a more inclusive society and development of effective policies for persons with disabilities, intrinsically linked to the grounding of this review’s topic. It is anticipated that scholarly research and interventions focused on enhancing participation and addressing isolation amongst individuals with neurodegenerative conditions would have increased following the implementation of this specific international human rights treaty in 2008, resulting from the UNCRPD. Thus, 2008 serves as a strategic marker to capture literature reflective of this enhanced global focus on accessibility, social inclusion, and the rights of persons with disabilities in health research and practice.

The databases to be searched include:

MEDLINE (via OVID): For its extensive biomedical literature, including neurology and rehabilitation studies.
CINAHL (via EBSCO): For nursing and allied health literature relevant to patient care and community support.
PsycINFO (via OVID): For psychological aspects of disability, participation, and integration.
SCOPUS: For a broad scope of scientific literature.

The search will include grey literature accessed via ProQuest Dissertations and Theses Global, to capture data not available in academic journals, focusing on conference proceedings, organisational reports, and government documents related to social participation and neurodegenerative conditions.

Study/Source of evidence selection

Following the search, all identified citations will be collated and uploaded into EndNote 20.6 (Clarivate Analytics, PA, USA) and duplicates removed by using the ‘Find Duplicates’ dialog function in EndNote. Following a pilot test, titles and abstracts will then be screened by two or more independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant sources will be retrieved in full, and their citation details imported into a subgroup in EndNote 20.6 (Clarivate Analytics, PA, USA). The full text of selected citations will be assessed in detail against the inclusion criteria by the lead reviewer, with any queries settled amongst 2 or more independent reviewers. Reasons for exclusion of sources of evidence at full text that do not meet the inclusion criteria will be recorded and reported in the scoping review. Any disagreements that arise between the reviewers at each stage of the selection process will be resolved through discussion, or with an additional reviewer/s. The results of the search and the study inclusion process will be reported in full in the final scoping review and presented in a PRISMA flow diagram (Page et al. 2021).

Data extraction

Data will be extracted from papers included in the scoping review solely by the lead reviewer using a data extraction tool. The data extraction tool for this scoping review will be an adapted form based on the established Cochrane data extraction template. The Cochrane template, known for its rigorous approach to systematic reviews, has been modified to better fit the unique requirements of this study (Cochrane Effective Practice and Organisation of Care 2017) .The adapted template will include fields specific to our research questions such as mode of delivery, neurodegenerative condition researched, and activity details, whilst also keeping components of the original template such as, study design, and key findings. The Cochrane template's comprehensive nature allows for capturing nuanced data on study design, population demographics, intervention specifics, and outcomes, providing a structured approach to extract and analyse the relevant data systematically. The process will be piloted on a small subset of included studies to confirm the template’s efficacy in capturing all necessary information and will be revised accordingly. Any modifications made to the original Cochrane template will be documented to maintain transparency of the methodology. Moreover, any disagreements that arise between reviewers will be resolved through discussion, or with an additional reviewer/s. The final version of the adapted data extraction form is included in supplementary files under 'Appendix II'.

Data analysis and presentation

The analysis of the extracted data will be designed to align directly with the review's overarching objective: to map the evidence on social participation and support mechanisms for adults with neurodegenerative conditions. The presentation of the data will be carried out using both graphical/diagrammatic representations and tabular formats to facilitate clear, concise, and comprehensive communication of the findings. For graphical representation, we will employ charts and diagrams where appropriate; one way in which we aim to do this is via pie charts displaying the distribution of neurodegenerative conditions included in the final scoping review. Moreover, diagrammatic representations such as PRISMA flow diagrams (Page et al. 2021) will be used to illustrate the study selection process, while thematic maps will be used to depict the relationships and themes identified within the literature. Tables will be used to summarise the characteristics and findings of the included studies, allowing for quick reference and comparison. These tables will cover study details such as authors, year, study design, population, intervention types, outcomes, and key findings related to social connectedness and neurodegenerative conditions. A narrative summary will accompany the visual and tabular presentations of data, providing context and interpretation of the results. This narrative will explain how the findings relate to the review's objectives and questions, discussing the nuances and implications of the evidence, and identifying gaps in the current research landscape.

In preparation for the final review, a pilot phase will be undertaken to determine the most effective way to present and map the data. This phase will involve experimenting with different styles of data visualisation to establish which method best conveys the information to the reader in a clear and meaningful way. By employing a combination of presentation methods, we aim to ensure that the data is accessible to a broad audience, including healthcare professionals, individuals with lay expertise, and stakeholders with an interest in the support systems for individuals with neurodegenerative conditions.

Acknowledgements

We would like to express our sincere gratitude to Jonathan Jones, Subject Librarian at the Cardiff University School of Healthcare Sciences, for his invaluable assistance in the development of the search strategy for this scoping review. His expertise in information science significantly contributed to the refinement of the search parameters and the overall methodological rigour of this review.

This scoping review is a component of Hannah Trotman’s PhD work at Cardiff University, and the findings will contribute towards the fulfilment of the degree requirements. The PhD is funded by Health and Care Research Wales.

Funding

This review forms part of a PhD funded by Health and Care Research Wales

Declarations

The authors have a background in mix of social and clinical sciences including psychology (HT), medical sociology (FW), occupational therapy (DS) and physiotherapy (KH). None of the authors are living with a neurodegenerative condition, but two of the authors have been carers for individuals living with a neurodegenerative condition.

Author contributions

The scoping review was conceived by KH, FW and DS. The protocol was developed and written by HT. KH, FW and DS contributed to the editing of the protocol. All authors agreed the final draft.

Conflicts of interest

None of the authors declare a conflict of interes

AppendixI.docx
Appendix I
AppendixII.docx
Appendix II
Table1.docx
Table 1. Search strings and concepts for the scoping review.

Download PDF

Version 1

posted

You are reading this latest protocol version

Digital and Community-Driven Strategies for Enhancing Social Participation in Adults with Neurodegenerative Conditions: Protocol for a Scoping Review of Current Interventions

Status:

Version 1

Abstract

Introduction

Procedure

Acknowledgements

Supplementary Files

Status:

Version 1

Privacy Policy

Terms of Service

Digital and Community-Driven Strategies for Enhancing Social Participation in Adults with Neurodegenerative Conditions: Protocol for a Scoping Review of Current Interventions

Status:

Version 1

Abstract

Introduction

Procedure

Acknowledgements

Supplementary Files

Status:

Version 1

Privacy Policy

Terms of Service

Manage Cookie Preferences