The role of social network analysis in identifying unmet support needs for families supporting an adult with a learning disability within family homes

Introduction

In the UK, an estimated 8.8 million people provide unpaid care to a family member, saving the economy £132 billion per year. Around two thirds of carers support an adult with a learning disability (LD) in their homes. Over time, many carers adapt to the caregiving role, and acquire skills to support their relative. However, burnout can occur if appropriate support, such as respite breaks, is not available.

Years of austerity, cuts to social care budgets, together with the COVID pandemic has created the perfect storm, with families providing longer hours of care whilst being isolated from usual support such as that provided by day centres. This situation is not sustainable and should raise alarm bells with social care providers and policy makers alike. With social care budgets under pressure, gaining an understanding of what support is available through carers own support networks would seem imperative. However, little is currently known about the social support networks of family carers of adults with LDs.

Objectives

Aim

The aim of this project is to undertake social network mapping with parent-carers of adults with LD to explore how relationships work within these networks and how family carers’ own characteristics (e.g. age, sex, education, finances etc), can affect the size and make-up of these networks and, in turn, available support. Highlighting the different types of network available to families will help identify unmet support needs, which could help social care providers plan services and assess carers’ needs.

Methods

How this will be done:

Data will be collected through recruiting 30 parent-carers aged 60 years and older, providing care to an adult with LDs in homes in England. An in-depth exploration of support available to parent-carers will be undertaken by creating visual maps of support.

A diagram comprising three different sized circles, will be used as a visual aid to prompt carers’ memory and to map their support networks. A short questionnaire which assesses distance of nearest relative; frequency of interactions with relatives/friends/ neighbours, and engagement in community/religious activities, will be used to categorise networks from the diagram into different network types. The aim is to identify both available support and unmet support needs. An assessment of the impact receipt of social services has upon families’ quality of life will also be undertaken.

Findings will be disseminated at conferences, via academic papers, end-of-project report, blogs and articles. The knowledge gained from this study will be shared with social carer providers and family carers during two workshops to discuss how the findings can be used to help improve social care practices in planning services and assessment of carers’ needs.