Caregiver Health Related Quality of Life and Burden When Caring for Children with Traumatic Brain Injury
Rose, W. (2012). Caregiver Health Related Quality of Life and Burden When Caring for Children with Traumatic Brain Injury (Thesis, Master of Social Sciences (MSocSc)). University of Waikato, Hamilton, New Zealand. Retrieved from https://hdl.handle.net/10289/7573
Permanent Research Commons link: https://hdl.handle.net/10289/7573
Often family members take on the responsibility of caregiver when another family member sustains a traumatic brain injury (TBI). The caregiving role is a stressful task which may impact negatively upon caregivers’ psychological and physical health. Variables which may contribute to caregiver burden include: caregiver age, educational attainment, income, gender, ethnicity, marital status, supports, time post-injury, and child clinical variables: TBI severity, behavioural functioning and adaptive functioning. The literature varies in its reporting of which areas of health are most affected, and the degree to which sociodemographic and child variables impact upon negative health related quality of life (HRQoL) and burden. To address this the current study explored health outcomes for TBI caregivers using a battery of measures (Medical Study Short Form-36, Hospital Anxiety and Depression Scale, DSM-IV Depression Diagnostic Scale, BAKAS Caregiving Outcomes Scale); questionnaires were also used to collect sociodemographic information and information relating to supports and services used in the rehabilitation of the TBI child. The Behavioural Assessment System for Children was used to collect behavioural and adaptability information from the caregivers about the child. Assessments were carried out at baseline, 1-month, 6-months and 12-months post TBI from a sample of 94 TBI caregivers and at baseline from a sample of 43 Control caregivers. TBI caregivers experienced poorer overall health and higher levels of depression and were less likely to report positive life changes compared to Control caregivers. Older age and higher income predicted positive life changes. In addition to this higher income predicted better physical and overall health. Ethnicity was found to predict depression with the Māori/‘other ethnicity’ group suffering higher levels of depression. Children’s dysfunctional behaviour was found to predict poorer caregiver health outcomes across several domains; these include physical health, overall health, and depression; while the child’s adaptive functioning was not found to be a predictive factor in any caregiver health domains. New Zealand European and Māori TBI caregivers experienced similar health outcomes and received similar levels of support. However, Māori experienced more positive life changes than New Zealand Europeans. Caregivers’ physical and psychological well-being was found to improve over time, these changes were the greatest between the 1-month and 12-month period. As a high percentage of children’s TBI’s occur in the home and at school, education aimed at schools and parents to inform of the effects of TBI upon children and families will bring an awareness which may encourage families to seek medical help. In doing so will offer the opportunity to receive or seek support in the initial period post TBI in the hope of reducing the burden for caregivers and producing better health outcomes. Bringing these families into contact with medical services may also help in identifying caregivers at higher risk of poorer health outcomes. Findings of more positive life changes for Māori may suggest cultural ideology is a protective factor in caregiver burden, further investigation may be necessary to understand these cultural differences and how they impact upon the caregiving role.
University of Waikato
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