Impact of Acquired Brain Injury on Quality of Life

Abstract

Background

An injury to the brain affects a person in some or all cognitive, emotional, behavioural and physical domains impacting quality of life. Quality of life is essential to well-being and optimum functioning of a person in daily life. It is influenced by various individual and social aspects like physical, psychological, social relationships and environment. This article discusses an overview of impact of acquired brain injury on quality of life.

Purpose

This article aims to create an awareness of the nature of brain injury, factors impacting quality of life, and inter-relationships amongst them which can have implications for clinical rehabilitation.

Conclusion

An acquired brain injury is a life-changing event for the affected person and the family. It is globally considered a national burden. As compared to the developed countries, the availability and access to social determinants of health is low in the underdeveloped, and developing countries. An awareness of the nature of brain injury, the prognosis, available approaches to treatment can enable simple cost-effective psychosocial interventions to complement overall rehabilitation plan.

Introduction

An acquired brain injury is an injury to the brain after birth caused by traumatic or non-traumatic causes. ¹ The injuries result in cognitive, emotional, physical, and behavioural changes. Depending on the nature of the injury an affected person can experience negative affect, loss of identity, ² stigma ³ be in a state of denial of disability and tend to isolate themselves socially. The injury, thus, affects the quality of life of the person and the caregiver ⁴ which showcases in many different forms in various domains of environment, social relationships, psychological and physical well-being.

Acquired Brain Injury

An acquired brain injury is an injury to the brain after birth caused due to traumatic or non-traumatic causes ⁵ Non-traumatic injuries to brain occur due to stroke, lack of oxygen to brain, insulin shock, tumours, infections, for example, due to worm infestations, AIDS, tuberculosis. Traumatic brain injuries are caused due to falls, accidents, sports, and explosives. The life-altering experiences of persons affected with brain injuries can alter their activities of daily living, independence, and overall quality of life.

As a result of injury to the brain, a person may experience personality changes, irritability, apathy, ⁶ lack of awareness, ⁷ hypersensitivity, ⁸ fatigue, ⁹ stigma, ³ loss of self-concept, ¹⁰ self-esteem, and loss of identity. ² In some cases, there may be symptomatic prevalence of neuropsychiatric symptoms Depending on the stage of lifespan development, a person may manifest long-term symptoms. ¹¹ Collings ⁴ brings about the nature of grief experienced by caregivers. Thus, brain injury affects a person, caregivers, and society, and it is considered a national burden.

Quality of Life

World Health Organisation defines quality of life as ‘individuals’ perception of their life in context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’. Lopera-Vásquez ¹² suggested the inclusion of subjectivity. Broadly, quality of life encompasses various aspects in which a human being exists and interacts in daily life such as environment, social relationships, psychological and physical. Community integration, positive affect, social support with an interplay of spirituality are considered good indicators of quality of life. ¹³

Acquired Brain Injury and Quality of Life

Depending on the nature and severity, a brain injury influences various cognitive, emotional, physical, and behavioural aspects of a person. This can result into diminished quality of life for the affected person as well as the caregivers.

Cognitive deficits could result into problems with executive functions, memory functions. An affected person could experience problems with attention, immediate and short-term recall, amnesias, orientation, and navigation, difficulty in recognising faces (prosopagnosia), ¹⁴ difficulty in visualisation (acquired aphantasia ¹⁵ ), impairment to functional communication such as in aphasias, ¹⁶ and dysarthria, and an inability to express the subjective experience. ¹² Cognitive fatigue is common which causes reduced participation and quality of life. ⁹

Neuropsychiatric and neurobehavioural disorders ⁶ exhibit in various forms like emotional dysregulation, irritability, apathy, inability to identify and express emotions (alexithymia), ¹⁷ distress, mood disorders like depression, post-traumatic disorder, anxiety sensitivity or experiential avoidance, ¹⁸ laughing and crying, ¹⁹ frustration, anger, aggression, ²⁰ disappointment and suicidal ideation. ⁶ The subtle nature of neurobehavioural disability results in poor psychosocial outcomes, affects relationships results in social withdrawal and isolation. This isolation becomes pronounced in certain contexts such as those seen during covid lockdowns. ²¹ This adds to the psychological distress of the person and adds to the psychological caregiver burden. ²²

Compromised or loss of functional abilities, for example, due to motor functions, hemiparesis, and disfigurement could result in feelings of guilt, shame, and perceived stigma. ³ As a result, some persons could experience and exhibit a gradual loss of self-concept, self-esteem, and a loss of identity. ²

Environmental factors are affected by availability and access to social determinants of health. The sum impact, depending on the stage of life span, could cause distress to the affected person and caregivers due to inability to perform to pre-injury levels in various contexts like career, home and workplace or get lower strata job or loss of job which results in a loss of income. In absence of awareness about the nature of injuries, their impact, available treatments, lack of social security, and access to specialised treatments for example for aphasia ²³ could further compromise the quality of life.

Acquired Brain Injury, Spirituality and Quality of Life

For some spirituality supports their journey to recovery.^{24, 25} While proposing a model for caregivers of persons with traumatic brain and spinal cord injury established a link between psychological burden, spirituality, hope and resilience. He showed that psychological burden had an inverse relationship with spirituality, spirituality was positively correlated to hope, and hope positively correlated to resilience. He further established an indirect relationship of spirituality with positive affect which in turn had an inverse relationship with depression caregivers. ²⁶ Suggested that spirituality could be studied in promoting resilience. Gillespie ²⁷ observed that spirituality helped in post-traumatic growth for which trust, and sense of presence were required. van Velzen et al. ²⁸ observed the influence of emotional regulation in the relationship between spiritual health, domains of quality of life, mental health and burnout.

Acquired Brain Injury and Return-to-Work

Return-to-work is an important factor in quality-of-life after injury.van Velzen et al. ²⁹ concluded that about 40% of affected persons returned to work after one to two years. Those returning could not sustain their jobs while others did not return permanently. Long-term consequences of neuro psychiatric disorders, neuro behavioural disability could affect the stability, and reduce the capacity to work. ³⁰ However, Machamer et al. ³¹ observed that the ability of a person to maintain uninterrupted employment was related to combined effects of premorbid functioning and severity of traumatic brain injury. To facilitate return-to-work, Weber et al. ³² suggested suitable interventions be designed, and their efficacy studied to reduce the dysfunctional frontal behaviours so that a that a person could gain and maintain employment. After studying the barriers to workplace adaptability, Donker-Cools et al. ³³ suggested a mutual appreciation by employers and employees regarding a direct relationship between work overload and resultant sensory overload and adapt workplace accordingly. While studying the perceptions of sensory hypersensitivity, and its impact on daily life of affected persons, de Sain AM et al. ⁸ suggested that cognition be studied with a focus on attention, fatigue, stress, and coping, and future studies be carried out to understand the emotional, and physical consequences on return-to-work, and social integration.

Rehabilitation and Quality of Life

Rehabilitation in acquired brain injury is interdisciplinary in nature. It is a series of outcome- based interlinked processes ³⁴ to promote the psychosocial well-being and quality of life of affected persons. Person-centric psychosocial interventions incorporating activities such as those to enhance cognitive reserve could help long-term outcomes. ³⁵ Quality of life should be considered as early as from the onset of a brain injury. ³⁶

Rehabilitation is defined in many ways, as Wallace et al. ³⁷ observed that there are many definitions. He highlighted the importance of value and evidence-based care with measures such as structure, process, outcome and experience measured at multiple time points.

The outcomes could be functional independence, return to work and quality of life with community integration as the overall goal. Physical therapy and psychological intervention showed strong evidence while multi-disciplinary rehabilitation demonstrated moderate evidence for longer-term gains at the levels of activity and participation towards patient outcomes. ³⁸ Rose ³⁹ suggested a biopsychosocial approach to improve long-term outcomes for people with aphasia. van Markus-Doornbosch et al. ⁹ suggested targeting fatigue could help in outcomes related to improved participation and quality of life.

Shaikh et al. ⁴⁰ conceptualised an operational model for community integration comprising six elements, namely, independence, a sense of belonging, adjustment, having a place to live, being involved in a meaningful activity, and being socially connected to community. They emphasised the need for clinicians to be aware of antecedents to community integration, which included individual, injury-related, environmental, and societal factors.

Milosevich et al. ⁴¹ highlighted the importance of early domain-specific screening to enable a better appreciation of prognosis and long-term cognitive outcome which can be taken into consideration while designing outcome-based psychosocial interventions in a multi-disciplinary rehabilitation treatment plan.

Some persons experience post-traumatic growth, yet others do not. To promote long-term post-traumatic growth, Igoe et al. ⁴² suggested long-term neuropsychological support allowing adaptive coping strategies, which support psychosocial well-being allowing individuals to find meaning post a brain injury.

Conclusion

An acquired brain injury affects an individual, family, and the society at large. It is imperative that the latter understand the nature and prognosis of recovery from brain injury and monitor the subtle insidious nature of the impact on the affected person, relationships, and quality of life of all in the ecosystem while taking care of their own selves; seeking professional help when required.

Awareness, availability, access and cost-effective integrated psychosocial interventions as part of overall treatment plan could complement rehabilitation and recovery making possible to the extent possible functional independence in activities of daily living, return-to-work and integration with community which are goals of rehabilitation and indicators of quality of life.

In absence of these, some affected persons can resort to extreme actions such as substance abuse, and suicide out of frustration and hopelessness. Thus, it is important to understand the nature and long-term consequences of neuropsychiatric disorders and neurobehavioural disability, to classify and afford person-centric treatment towards a better quality of life. ¹¹

Social determinants of health include social and community contexts, economic stability, availability and access to education, health care, the built-in environment, and the neighbourhood. These impact the long-term outcomes of rehabilitation. ²³ To a certain extent, their availability is influenced by the Gross Domestic Product (GDP) per capita of a nation; the limitations of which can be offset to an extent by community-oriented, person-centric policies in alignment with the vision of the nation.

Implications for Clinical Rehabilitation

• Design of simple and cost-effective psychosocial interventions as part of a comprehensive neuro-psychological rehabilitation plan which is specific to a culture, social strata, and in return-to-work contexts to sustain long-term stability.

• Creating awareness about the nature of acquired brain injury to enable adaptability at workplace by the employers and employees.

• Creating public and institutional awareness for incorporating respective laws.

• Instituting various policies keeping in view the multi-faceted spectrum of disabilities caused due to acquired brain injury to provide social security, creation of and access to quality social determinants of health.