A mixed-methods analysis examining child and family needs following early brain injury

Abstract

Purpose:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (M = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment.

Methods: Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child’s behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed.

Results: Results indicated some families continue to experience unresolved concerns relating to the child’s injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping.

Conclusion: Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting.

IMPLICATIONS FOR REHABILITATION

• Early TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family.

• Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury.

• Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.

Keywords:

• Early traumatic brain injury
• caregiver
• family system
• post-injury outcomes

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by [grant number 90IFDV0003] from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).