Abstract
ABSTRACTAims: This study sought to explore the experiences of young people (aged 8–16) and their families following parental acquired brain injury (ABI), with the aim of developing an understanding of the ways in which members of a family make sense of events post-injury, and to consider the implications of different perspectives on adjustment and coping.Design: The study applied a qualitative approach using a thematic analysis methodology.Procedure: Individual semi-structured interviews were conducted with 10 individuals from three families affected by parental stroke.Results: Findings suggested that post-injury, families experienced a period of uncertainty in which they were required to renegotiate their roles and adjust to the loss associated with parental stroke. Additionally, the psychosocial wellbeing of young people was negatively affected, whilst protective and coping strategies were recognised.Conclusions: The research offers an insight into the processes that may contribute to patterns of interpersonal relating that could negatively impact on adjustment. Provision of adequate information, psychological and practical support during recovery may therefore be crucial elements of supporting young people and their families in adjusting to the challenges posed by stroke.
Highlights
Acquired Brain Injury (ABI) is a growing public health concern
‘It's nothing you could ever prepare anyone for’ All families were affected by the sudden onset of ABI that did not appear to have been preceded by an obvious period of ill health
The uncertainty described by participants in relation to ABI sequelae, epidemiology, and prognosis is consistent with existing research that has suggested that lack of information regarding ABI may perpetuate distress within families [14 - 17, 22]
Summary
Acquired Brain Injury (ABI) is a growing public health concern. Stroke is the second leading cause of death and the third leading cause of disability worldwide [1]. In addition there are estimated to be in excess of 10 million people affected by Traumatic Brain Injury (TBI) arising from motor vehicle accidents, falls, and assaults [2]. ABI includes, amongst others, injuries resulting from brain tumour, meningitis, encephalitis, hydrocephalus, and anoxia [3, 4]. Medical advances have resulted in increased numbers surviving ABI, and living with associated disability [4]; over 43% of survivors of TBI, and as many as 50% of survivors of stroke experience long-term disability [5, 6]. Premorbid lifestyle factors can influence recovery following injury and may place individuals at risk of further injuries [e.g., 4, 5]
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