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The experiences of relatives of people with Acquired Brain Injury (ABI) of the condition and associated social and health care services

Holloway, Mark and Tasker, Ross (2019) The experiences of relatives of people with Acquired Brain Injury (ABI) of the condition and associated social and health care services. Journal of Long-Term Care, 2019. 99 - 110. ISSN 2516-9122

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Identification Number: 10.31389/jltc.20

Abstract

Context: ABI can arise from many causes and is a significant issue for long-term care. Developments in health care have meant that many more people with ABI are living longer, some with complex needs arising from their brain injury. The consequences of injury are generally long-term, even lifelong. Family members of people with ABI are significant to their rehabilitation, support and care, and research has identified many of the challenges they face. Objective: This paper reports work to survey the views of family members of people with ABI to ascertain their experience of the condition and their views and experience of related health and social care services. Method: An online survey was distributed via ABI networks to family members of individuals affected by ABI. One hundred ten respondents ranked the difficulties met by their relative living with an ABI and rated the services they had encountered. A series of open questions enabled respondents to provide greater detail regarding their experience and knowledge. Findings: The key findings are that relationships between the injured and non-injured parties change, alterations to roles and responsibilities are difficult and mediated via unending and complex grief. Relatives reported poor levels of involvement in decisions regarding the provision of social and health care services, a failure to be given good, accurate information in a timely fashion and the need to ‘fight’ for virtually any service provided. Service provision, particularly post-hospital discharge, was very regularly criticized for being either entirely absent, unaware of the impact of brain injury, failing to take account of actual functioning and/or structured in ways that are not concomitant with the needs of the injured person or the relative. Lack of knowledge of the impact of ABI by non-specialist staff and services is particularly highlighted as a barrier to progress and an added burden for relatives to contend with. Social work in particular was commented upon most negatively, most often for a failure to understand the condition and needs. Valued services and professionals are noted to be humane, knowledgeable about ABI, aware of the impact ABI has on the non-injured relative and able to act as a single ‘one-stop’ focal point for service provision. Limitations: As a self-selecting cohort of respondents to an online survey the work is not necessarily generalisable to the population as a whole. The findings, however, provide important considerations for improving social and health care services for people with ABI and the key relatives involved in supporting them. Implications: Commissioners and providers of social and health care services ought to work more closely with family members of people living with ABI. Services and individual practitioners need to be more knowledgeable about the likely functional outcomes of ABI, in particular the impact of invisible impairments to cognition and executive functioning. Relatives identify the benefit of good quality, accurate information and of a knowledgeable single point of contact across time and setting. Knowledge of ABI, of neurorehabilitation and of the impact of ABI upon family members by social workers is noted to be poor and attention to this may help with people’s rehabilitation and to prevent unnecessary additional carer burden.

Item Type: Article
Official URL: https://journal.ilpnetwork.org/
Additional Information: © 2019 The Authors
Divisions: LSE
Subjects: R Medicine > RC Internal medicine
R Medicine > RA Public aspects of medicine
H Social Sciences > HV Social pathology. Social and public welfare. Criminology
H Social Sciences > HQ The family. Marriage. Woman
Date Deposited: 24 Aug 2020 12:36
Last Modified: 25 Aug 2020 14:30
URI: http://eprints.lse.ac.uk/id/eprint/106224

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