A Systematic Scoping Review Protocol of the Impact of Mutual Care on Individuals with Learning Disabilities and their Ageing Carers in the United Kingdom

The majority of individuals with Learning Disabilities (LD) within the United Kingdom (UK) are cared for by family members, usually a parent. As people with LD are now living longer than ever before this has resulted in the average age of carers for adults with LD also increasing, currently averageing 70 years of age or older [1]. Crucially, ageing carers present with care and support needs of their own. This has resulted in an increase of mutual care relationships. Mutual care relationships occur when an individual being cared for i.e. an individual with LD, takes on some level of care for their main carer. Mutual care relationships can become even more complex within these populations due to the co-morbidities associated with learning disabilities and ageing [1]. For example, individuals with LD are more likely to develop conditions related to older age – such as osteoporosis and diabetes – at a younger age compared to the general population [1] and are at a “greater risk of developing dementia than the general population (22% vs 6% aged 65 and above) [2]. While the number mutual care relationships within the UK is predicted to rise, the impact of mutual care on the physical and mental wellbeing of both ageing carers and individuals with LD who assume a caring role remains unclear. A preliminary search for existing scoping reviews and/or systematic reviews on the topic was conducted. Within the UK there are limited primary research papers and research syntheses available on this topic. To the authors’ knowledge no existing scoping reviews or systematic reviews on this topic currently exist. The aim of the current scoping review is to provide a greater understanding of the impact mutual caring may have on the physical and mental wellbeing of both ageing carers and individuals with LD who assume caring roles. This will include identifying existing interventions that support mutual caring within the United Kingdom as well as the barriers and facilitators that can influence access to interventions and the effectiveness of identified interventions. Following the PICO framework [3], this scoping review aims to synthetize existing knowledge, identify gaps in the literature and provide recommendations for future research, which may lead to improved support for mutual caring relationships and the potential to improve the physical and mental wellbeing of both ageing carers and individuals with LD who assume caring roles.


Introduction
The majority of individuals with Learning Disabilities (LD) within the United Kingdom (UK) are cared for by family members, usually a parent. As people with LD are now living longer than ever before this has resulted in the average age of carers for adults with LD also increasing, currently averageing 70 years of age or older [1]. Crucially, ageing carers present with care and support needs of their own. This has resulted in an increase of mutual care relationships. Mutual care relationships occur when an individual being cared for i.e. an individual with LD, takes on some level of care for their main carer. Mutual care relationships can become even more complex within these populations due to the co-morbidities associated with learning disabilities and ageing [1]. For example, individuals with LD are more likely to develop conditions related to older age -such as osteoporosis and diabetes -at a younger age compared to the general population [1] and are at a "greater risk of developing dementia than the general population (22% vs 6% aged 65 and above) [2]. While the number mutual care relationships within the UK is predicted to rise, the impact of mutual care on the physical and mental wellbeing of both ageing carers and individuals with LD who assume a caring role remains unclear. A preliminary search for existing scoping reviews and/or systematic reviews on the topic was conducted. Within the UK there are limited primary research papers and research syntheses available on this topic. To the authors' knowledge no existing scoping reviews or systematic reviews on this topic currently exist.
The aim of the current scoping review is to provide a greater understanding of the impact mutual caring may have on the physical and mental wellbeing of both ageing carers and individuals with LD who assume caring roles. This will include identifying existing interventions that support mutual caring within the United Kingdom as well as the barriers and facilitators that can influence access to interventions and the effectiveness of identified interventions. Following the PICO framework [3], this scoping review aims to synthetize existing knowledge, identify gaps in the literature and provide recommendations for future research, which may lead to improved support for mutual caring relationships and the potential to improve the physical and mental wellbeing of both ageing carers and individuals with LD who assume caring roles.

Methods
A systematic scoping review was deemed the most suitable method due to the research questions proposed by the current review and the literature it intended to include. The current review aimed to provide a greater understanding of the impact of mutual caring on the physical and mental wellbeing of both ageing carers and individuals with LD who assume caring roles, as well as identifying any forms of intervention available to support mutual caring. While systematic reviews answer questions relating to specific interventions, the strict parameters required by this methodology deem it inappropriate for the purpose of the current review. Crucially, systematic scoping reviews are designed to synthesize knowledge according to an exploratory research question [4] and may include a wide variety of different research methodologies in the literature it includes, allowing it to provide an overview of broad research fields such as that included in the current review [5]. Furthermore, in line with the aims of the current review, scoping reviews may include any gaps in current research, make recommendations for future research as well as mapping key concepts and bodies of literature [4]. It is important to note that while scoping reviews generally do not require quality assessments of literature included, they do share a similar methodology to systematic reviews and as such they are rigorous, transparent and methodical in their approach [6][7][8].
As an extension of the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement called the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: extension for Scoping Reviews (PRISMA-ScR) is currently under development [10], the current scoping review followed the methodological framework proposed by Arksey and O'Malley [6] as well as the amendments to this framework proposed by Levac, Colquhoun and O'Brien [10], the Joanna Briggs Institute [11] and the guidelines for best practices provided by Colquhoun et el [12]. The Joanna Briggs Institute (JBI) methodology for Scoping Reviews, will be "congruent with the PRISMA-ScR checklist" and "will assist in standardizing future scoping reviews". It has been recommended that scoping review protocols follow the relevant aspects of the Preferred Reporting Items for Systematic Reviews and Meta-analysis for Protocols (PRISMA-P) guidelines [13] thus, the PRISMA-P was used to draft this current protocol [12].

Identifying the Research Question
The aim of the current scoping review was to provide greater

Identifying Relevant Studies
As scoping reviews provide an overview of broad research fields i. Physiological support (e.g. any reported changes in agerelated disease or physiological issues, blood pressure and/or blood glucose level, provision of external support e.g., walking aids, support workers, physical rehabilitation.) ii. Psychological support (e.g. any reported changes in mental wellbeing including stress, depression, financial worries, fear of the future, anxiety and perception of care providers. These can be self-reported or measured using psychological assessment tools) iii. Social support (e.g. any reported changes in social isolation, friendships and/or sense of belonging and/or independence).

Types of interventions:
The aim of this systematic scoping review is to synthesize knowledge regarding all available information related to the exploratory research questions, as such all interventions will be included.

Context/Setting: All participants must live within the United
Kingdom. If the participants did not live in the United Kingdom they were excluded. Interventions that were implemented in the UK were included in the review. Those interventions that were implemented outside of the UK were excluded.

Types of Studies
The purpose of the current scoping review was to synthesize all relevant available knowledge. To provide a comprehensive overview of this research topic all existing literature was included, e.g. primary research studies, systematic reviews, meta-analyses, letters, guidelines, websites etc.

Electronic Searches
The following electronic databases were searched:

Study Screening and Selection
Study selection (both at title/abstract screening and full text screening) was performed by three reviewers, independently. Any disagreements were solved by consensus or by the decision of a fourth reviewer were necessary. After eliminating the duplicates (studies that were identified more than once by the search engines), an initial screening of titles, abstracts, and summaries (if applicable) was undertaken to exclude records that clearly did not meet the inclusion criteria. Each record was classified as 'include' or 'exclude' to identify relevant and exclude irrelevant literature.
The researchers were inclusive at this stage and, if uncertain about the relevance of a publication or report, it was left in. The full text was obtained for all the records that potentially met the inclusion criteria (based on the title and abstract/summary only). In a second step, all the full text papers were screened against the inclusion criteria, using a standardised tool. Studies that did not meet the inclusion criteria were listed with the reasons for exclusion.
Multiple publications and reports on the same interventions were linked together and compared for completeness. The record containing the most complete data on any single intervention was identified as the primary article in the review, which was usually the original study or most recent evaluation report. An adapted

PRISMA (Preferred Reporting Items for Systematic Reviews and
Meta-analyses) flow-chart of study selection was included in the review [14].

Data Extraction and Management
Data for analysis were extracted from the included studies and managed in an Excel spread sheet. A data extraction sheet was developed which was tailored to the requirements of the review.
The data extraction sheet was tested on three included papers

Presentation of the Results (Data synthesis)
Findings from included studies were synthesised narratively.
The 'Guidance on the Conduct of Narrative Synthesis in Systematic Reviews' was used to advise the narrative synthesis [15]. First, a preliminary synthesis was conducted to develop an initial description of the findings of included records and to organise them so that patterns across records could be identified. In a second step, thematic analysis was used to analyse the findings. The following five steps of thematic analysis were followed adopting a recursive

Defining and naming themes
Depending on the findings available the reviewers will aim to provide a flow chart mapping the interventions available for ageing carers of individuals with learning disabilities, for the needs that were identified.