A mixed-methods analysis examining child and family needs following early brain injury
Aimee E Miley1, Allison P Fisher1,2, Emily L Moscato1,2
1Division of Pediatric Rehabilitation Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Insights
Families need support after early childhood traumatic brain injury (TBI). Unmet needs include child behavior management and caregiver stress, impacting the whole family system long-term.
Area of Science:
- Pediatric Neurorehabilitation
- Family Systems Medicine
- Child Psychology
Background:
- Traumatic brain injury (TBI) in early childhood presents unique challenges.
- Long-term impacts on child development, caregiver well-being, and family dynamics are significant.
- Existing support systems may not fully address the multifaceted needs of these families.
Purpose of the Study:
- To assess the needs of children and families following moderate to severe TBI in early childhood (0-4 years).
- To identify specific challenges related to child behavior, functioning, and caregiver well-being.
- To determine resources that would be beneficial for post-injury recovery and family adaptation.
Main Methods:
- Convergent study design utilizing focus groups (FG) and key informant interviews (KII).
- Administration of standardized questionnaires assessing psychological and parenting stress.
- Inclusion of 22 caregivers of children hospitalized for TBI within the past 10 years.
Main Results:
- Families report ongoing, unresolved concerns regarding the child's injury, caregiver mental health, and family functioning.
- Significant variation exists in reported caregiver psychological distress and parenting stress.
- Key unmet needs include child behavior management strategies and caregiver stress/coping support.
Conclusions:
- Early TBI has enduring effects on the child, caregivers, and the entire family system.
- Comprehensive interventions addressing the whole family system are crucial for optimizing outcomes.
- Future interventions should target caregiver stress management, self-care, and positive parenting skills.
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 REHABILITATIONEarly 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.
