A Systematic Scoping Review of the Interventions Available During Care Crises for People with Learning or Intellectual Disabilities (LD) who are Cared for by an Ageing Carer within the United Kingdom

A Systematic Scoping Review of the Interventions Available During Care Crises for People with Learning or Intellectual Disabilities (LD) who are Cared for by an Ageing Carer within the United Kingdom. Journal Item How to cite: Mahon, A.; Vseteckova, J.; Tilley, E.; Pappas, Y. and Randhawa, G. (2019). A Systematic Scoping Review of the Interventions Available During Care Crises for People with Learning or Intellectual Disabilities (LD) who are Cared for by an Ageing Carer within the United Kingdom. Biomedical Journal of Scientific and Technical Research, 20(5) pp. 15389–15393.


Introduction
The majority of individuals with learning disabilities within the United Kingdom (UK) are cared for by a family member, usually a parent. However, individuals with learning disabilities in the UK are now living longer than ever before [1] which means that the number of ageing family members providing care is also increasing. Furthermore, an increasing number of individuals with LD are now also outliving their parents [2]. Despite this, many adults with LD and their ageing carers do not make plans for their future [2], including periods of care crisis such as the serious illness or death of their ageing primary care provider. Yet, literature repeatedly states that one of the main concerns of ageing carers are "fears about the future". It is crucial that existing crisis interventions for individuals with LD who are cared for by an ageing carer within the UK are identified and evaluated as well as current preventative measures that assist in future care planning. Identifying these measures may reduce the occurrence of crisis periods or assist in the transition of care.
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 existing crisis interventions and preventative support available for individuals with LD who are cared for by an ageing carer within the UK. This will include evaluating the outcomes and effectiveness of available interventions, including cost-efficiency (where this information is provided). 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 interventions and the potential to improve future planning of care provisions for ageing individuals with LD.

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 synthesize all available evidence on the availability and effectiveness of the interventions available to support people with LD who are being cared for by older carers in times of crisis. This included a review of the financial implications of such crises and interventions. Crucially, systematic scoping reviews are designed to synthesize knowledge according to an exploratory research question and as such it was a suitable methodology for this review.
Scoping reviews provide an overview of broad research fields and may include a wide variety of different research methodologies and literature sources. The topic of the current review is also broad and required the inclusion of a wide variety of available literature, specifically grey literature such as annual reports from healthcare providers in regard to the cost efficiency of identified interventions.
Lastly, as the current review included all available interventions, a systematic review was deemed inappropriate as this would only answer questions relating to specific interventions. 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 rigours, transparent and methodical in their approach [4][5][6]. As an extension of the Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) statement called the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: extension for Scoping Reviews (PRISMA-ScR) is currently under development [7], the current scoping review followed the methodological framework proposed by Arksey, et al. [4] as well as the amendments to this framework proposed by Levac, et al. [8], the Joanna Briggs Institute [9] and the guidelines for best practices provided by Colquhoun, et al. [10].
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 [11] that scoping review protocols follow the relevant aspects of the Preferred Reporting Items for Systematic Reviews and Meta-analysis for Protocols (PRISMA-P) guidelines [12] thus, the PRISMA-P was used to draft this current protocol.

Stage 1: Identifying the Research Question
The aim of the current scoping review is to provide a greater

Stage 2: Identifying Relevant Studies
Scoping reviews provide an overview of broad research fields [6] as To be included in the review, records had to report at least one of the following outcome measures:

I. Primary Outcome
The outcomes were expected to be diverse and context-specific.
The primary outcomes of interest where: a

II. Secondary Outcomes
The secondary outcomes of interest are the availability and C.

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.

D. Context/Setting
Both carers and the individuals they care for must live within the United Kingdom. If the carer or the individuals they are caring 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. b.

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.

c. Electronic Searches
The following electronic databases were searched:

Stage 3: Study Selection 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 [12].

Stage 4: Charting the Data 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 and, where necessary, it was revised to ensure it can be reliably interpreted and could capture all relevant data from different study designs. Extracted data included authors, year of study/ report, aim/purpose, type of paper (e.g. journal article, annual evaluation report, etc.), geographical area, study population (e.g., age of participants and learning disability diagnosed), sample size, study design, description of crisis, description of the service, infrastructure, funding, policy and/or intervention (including whether it was preventative, in response to a crisis or if no intervention was available), duration of interventions, analysis used, outcomes reported by service user/carer/healthcare professional/ family unit, any clinical outcomes reported (e.g. mental wellbeing of service user such as anxiety), any financial outcomes reported (costing models; financial implications reported by family/service user/care providers), key findings that relate to the scoping review questions.

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 [13]. 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 process [14]: 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.