The Experiences of Relatives of People with Acquired Brain Injury (ABI) of the Condition and Associated Social and Health Care Services

Abstract

IntroductionAcquired Brain Injury (ABI) is a significant issue for longterm care. Data collected in the UK suggest that, on average, 445 people are admitted to hospital with a head injury every day (Headway, 2015b). Many of these injuries caused in, for example, road traffic accidents, assaults, falls and sporting injuries are generally minor, but a significant proportion can cause traumatic damage to the brain. The vast majority (95%) of admissions to hospital with head injury present with a normal or relatively unaltered state of consciousness, and 0.2% of admissions will result in death during the acute phase of admission (NICE,

Operationalising the Deprivation of Liberty Safeguards (DoLS) in support of brain injury survivors – views from practice

“…Practitioners in the present study consistently reported concerns about other professionals' assumptions of capacity in individuals with ABI. Like Moore et al (2019), practitioners in the present study felt other professionals did not always understand the complexity of brain injury and its presentations, a point made by family members about staff generally (Holloway and Tasker, 2019). This reflects other evidence that many individuals with an ABI can mask their executive functioning difficulties owing to their intact intellect (Acquired Brain Injury and Mental Capacity Act Interest Group, 2014) and intact language abilities (McCrea and Sharma, 2008).…”

“…Different mediating factors seemed to account for the variability in practice. These reflected some of the wider contextual challenges of ABI practice which others have noted is so important (Holloway and Tasker, 2019).…”

Just a little bit of history repeating: the recurring and fatal consequences of lacking professional knowledge of acquired brain injury

“…associated with cognitive impairments, particularly the executive impairments that may compromise development of insight (Holloway and Tasker, 2019;Moore et al, 2019;Norman 2016). ABI has long been recognised as a family condition by both social worker authors (Romano, 1974) and others (Lezak, 1978).…”

“…Since Tom's death in 2014, and even since the publication and release of his SAR in 2017, there have been many publications pertinent to the issue discussed here; the needs of individuals and families affected by ABI that are in the purview or duty of a UK social worker. Academic social work however has proved to have very limited interest in the condition with few articles (albeit an increasing number) published across the English speaking world (Mantell et al, 2012, Mantell et al, 2017Mantell et al, 2018) Work published in recent years, often from outside of the profession, has identified difficulties with an absence of social worker knowledge of ABI and the impact that this has upon other sectors of health and social care, upon family and upon affected individuals (Fins 2015;Holloway, 2014, Golightley & Holloway, 2016Fyson, 2016, Simpson &Yuen, 2018;Holloway and Tasker, 2019, Moore et al, 2019. A review by the House of Lords into how the Mental Capacity Act was working in practice identified significant and specific difficulties relating to ABI (House of Lords, 2014).…”

“…The executive impairments associated with ABI are particularly important when considering social work practice, as they are hidden invisible disabilities that impact planning, problem solving, decision-making, inhibiting and initiating appropriate behaviour, and level of insight into disability (George & Gilbert, 2018 Since 2014, plentiful research has commented on the difficulties of providing appropriate long-term support to those with ABI within the confines of current social work practice. Specifically, the research has identified that a lack of knowledge of the impact of cognitive and executive impairments and the impact of reduced insight upon functioning and behaviour can negatively impact on assessments and on identifying needs (George & Gilbert, 2018, Flynn, 2016, Norman, 2016, Adshead et al, 2019Norman et al, 2020;Norman, 2020;Moore et al, 2019, Odumuyiwa et al, 2019Holloway, 2014, Holloway, 2017, Holloway & Tasker, 2019. The failure of social workers to take account the potential impact of ABI upon individuals and the decisions they make has been identified as creating significant harm to people with a brain injury and their families (Moore et al, 2019;Flynn 2016;Norman, 2016).…”