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Just part of the job: The experiences of parent caregivers caring for adolescents with mild traumatic brain injury

Mild traumatic brain injury (mTBI) is one of the most frequently occurring injuries during adolescence. Typically care following such injuries is provided informally, by parents and close family members. The requirement for such caregiving is likely to increase as national health policies attempt to balance the growing costs of health-care provision with requirements for culturally responsive care. While studies have shown that caregivers may experience considerable burden, it is increasingly evident that caregiving also has a positive impacts for carers. To date, few studies have evaluated the positive experiences of caregiving. Even less is known about the positive experiences of parents who care for their adolescent children following acute injury events such as mTBI. It is important to understand caregiver experiences more completely as caregiver coping and burden contribute to recovery and adaption to injury. The aim of this study was to describe and understand the experience of caregivers of adolescents aged 10 – 18 years with mTBI. Using a mixed methods approach, existing quantitative data gathered as part of the Brain Injury Outcomes New Zealand in the Community (BIONIC) and Consequences of Brain Injury in Childhood (COBIC) studies of TBI in New Zealand were analysed (mTBI group = 54 caregiver-adolescent dyads, control group = 54 dyads). Semi-structured interviews were then completed with a sample of caregivers of adolescents with mTBI now aged 13 – 16 years recruited from the same source studies (n=10). Interview transcripts were qualitatively assessed using thematic analysis. Quantitative analysis confirmed previous research findings that for the majority, the impacts of mTBI are minimal and typically resolve within the first year with generally positive outcomes. While carers in both groups described caring for adolescents as a predominantly positive experience, caregivers of injured adolescents reported a greater number of positive caregiving experiences. In addition, caregivers of injured adolescents reported significantly greater quality of life related to their physical health two years after injury compared with caregivers of adolescents without mTBI. Thematic analysis of interviews uncovered five core themes underpinning caregiver experiences: initiation; impacts and attributions; accommodation and adjustment; a valued experience; and, just part of the job. These themes revealed the importance of timely and relevant communication from schools and health providers to caregiver’s feelings of competency and to their ongoing relationship with these organisations. Reflecting on their experiences, caregivers valued the opportunities a mTBI created for emotional closeness with adolescents at a challenging time in human development. They also described intrinsic benefits of being able to share wisdom and experiences with others and the practical benefit of developing transferrable skills. Carers viewed their experiences as providing a unique opportunity for personal development through the recognition of carers’ capability and resilience as individuals. For all caregivers, the provision of care following mTBI was seen as an expected part of parenting – just part of the job. In contrast to family caregiving involving other caregiver – care recipient dyads (such as adult children caring for their elderly parents, or parents caring for their children as a result of chronic illness or disability), parent caregivers in the current study viewed caregiving as a positive experience. Rather than a burdensome additional responsibility, carers viewed caring for their adolescent children following mTBI as – just part of the job - an expected and indistinguishable aspect of their existing roles as parents.
Type of thesis
Giles, K. J. (2015). Just part of the job: The experiences of parent caregivers caring for adolescents with mild traumatic brain injury (Thesis, Master of Social Sciences (MSocSc)). University of Waikato, Hamilton, New Zealand. Retrieved from https://hdl.handle.net/10289/10101
University of Waikato
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