Utilising carer-related research and knowledge: A scoping review and information resource

Introduction

Carers are crucial to the care system. There is now a wealth of national and international material and research about carers. However, it is fragmented, disparate, lacks accessibility and utility which in turn

• makes finding information about carer research problematic
• impedes its capacity to inform future research, policy and practice aimed at improving outcomes for carers
• makes it difficult to support the implementation of the Care Act 2014.

Objectives

The primary focus of this timely project was a comprehensive scoping review of carer-related knowledge. The review had two complementary purposes:

• to provide a unique, academically robust and detailed mapping of carer-related evidence and knowledge that can also contribute to the identification of future research priorities relating to carers and inform social care practice
• to underpin an accessible digital resource, developed in partnership with, and hosted, the Social Care Institute for Excellence (SCIE) as part of their resources to support the implementation of the Care Act 2014.

Methods

The scoping review showed that national and international knowledge and evidence about carers is extensive, varied and has many sources. Searches were undertaken between June and December 2016. A total of 3,434 references were captured from 10 electronic bibliographic databases, the JiscMail carer research email discussion list, and miscellaneous other searches through following reference lists. The three most productive databases were Social Care Online, HMIC and Web of Science); together these accounted for more than 60 per cent of all references captured.

Classification of the materials led to the identification of 17 ‘types’ of knowledge resources – the leading category (accounting for almost 70% of citations) being ‘Journal Articles’. Analysis of the resources adopted a thematic approach and facilitated a mapping of the parameters and content of the existing research and other knowledge resources; 62 themes were identified which in turn were classified into four categories:

• Impact of care: the consequences and sequela of caring (39%)
• Carer variables: the characteristics and features of different types of carer and caring situations (27%)
• Type of care: the nature of needs of the cared for person, and the features of the care situation (18%)
• Support and carers: The provision and impact of general and specific help and support (16%).

Findings

• There are gaps in evidence on, for example: ‘hard to reach’ carers generally, and BAME carers and LGBT groups more specifically; caring across the life course; older carers; sandwich carers; the satisfactions and intrinsic benefits of caring
• Considerable evidence exists on carers’ characteristics, negative consequences of caring and mental health issues
• There are a number of areas where future policy, practice and research might most fruitfully be directed, for example: carers’ breaks, building resilience, delivering tailored support.

Resources

Full scoping review

Seeing the Wood for the Trees: carer-related Research and Knowledge

Evidence library

Carer Research and Knowledge Exchange Network (CAREN) developed from the scoping review of carer-related research and is a freely accessible knowledge exchange resource. The resources within this network are organised into 62 themes.

SCIE: Understanding Carers’ Hub

The scoping review underpins, together with associated Social Care Institute for Excellence (SCIE) material and work on carers, in SCIE’s freely available ‘Understanding carers’ hub.

Related publications

• Utilising carer related research and knowledge: a scoping review and information resource
  ( https://www.sscr.nihr.ac.uk/wp-content/uploads/SSCR-research-findings_RF091.pdf )