Findings from a scoping review of knowledge and research evidence

This resource presents findings from a scoping review of knowledge and research evidence relating to carers and carers lives and issues. These findings should inform future research, policy development and improve practice in delivering carer support.

Introduction

The review had two complementary purposes:

• to provide a unique, academically robust and detailed mapping of carer-related evidence and knowledge, thereby extending understanding about the nature of ‘what is known’ about carers and building on existing foundations for knowledge exchange
• to underpin a web-based resource on carers and caring developed in partnership with, and hosted and updated by, the Social Care Institute for Excellence (SCIE).

This resource forms part of SCIE’s suite of resources for commissioners, carers and practitioners around the implementation of the Care Act in relation to carers.

The project was led by Dr Mary Larkin, Senior Lecturer in Health and Social Care at the Open University and Dr Alisoun Milne, Professor of Social Gerontology and Social Work at the University of Kent. The work was supported by a project advisory group which included: carers, people who use services, social work practitioners, a GP, Third Sector carers agencies, SCIE and Department of Health representatives.

The scoping review was conducted by Melanie Henwood Associates and was completed in autumn 2017. A copy of the full report has been indexed on Social Care Online and a summary version is published on NIHR School for Social Care Research website.

A related resource offered by the Open University is a regularly updated knowledge network platform indexing all the 3000+ research records referenced in the review: Carer Research and Knowledge Exchange Network (CAREN)

• carers are increasingly supporting relatives with multiple needs and complex conditions; they are also performing more complex intensive tasks and roles for many hours a week
• there is a growing group of “sandwich” carers, mostly women in the 55-69 age group who are caring for both older and younger generations of their family whilst also working
• older carers (85+) are a growing group of carers. They usually providing care to a spouse or partner and are less likely to identify themselves as carers
• knowledge about some groups of carers often referred to as “hidden” or “hard to reach” carers are relatively invisible within research. This is particularly the case for carers from BME and LGBT+ communities and older carers  
• knowledge about young carers has grown significantly in recent years. However young carers remain a small proportion of the overall total
• although there are similarities in carers experiences, the experience of caring is unique because caring takes place within a relationship and every relationship is different
• caring can impact on every aspect of a person’s life
• there is no one size fits all model of carer support and what makes the most difference may not be the standard service offer
• although the findings in relation to the benefits of specific types of support (for example, respite care) are equivocal, there is relatively robust evidence about the value of psychosocial interventions for some groups of carers (including carers of people with dementia, with cancer, and those who have had a stroke).
• supporting working carers is a recurrent policy theme – around half of all carers are in paid employment and caring responsibilities are a major reason for giving up work for carers, particularly for women
• support has to be tailored, and sometimes it is the process of support that may be valued even if the ‘outcomes’ do not indicate positive effects