Psychosocial Measures and Outcomes Among Caregivers of Children With Tracheostomies: A Systematic Review
Darlene E. Acorda, Jennifer N. Brown, Elton M. Lambert, Karen DiValerio Gibbs
Abstract
OBJECTIVE: Children with tracheostomies have complex medical issues that require long-term technology dependence and continuous medical care at home. Parents of tracheostomy-dependent children often assume the majority of their child's home care leading to a shift in family dynamics and a decrease in caregiver quality of life. This systematic review sought to identify instruments to measure caregiver psychosocial outcomes after their child's tracheostomy and report on the findings. DATA SOURCES: A systematic review was performed using Medline, CINAHL, and EMBASE. REVIEW METHODS: Studies that evaluated psychosocial outcomes in caregivers of tracheostomy-dependent children were included. RESULTS: We screened a total of 1286 nonduplicate records to include a total of 12 studies assessing the psychosocial outcomes of parents of tracheostomy-dependent children. Fourteen instruments were identified. Caregivers reported lower quality of life when compared to other chronic caregiver groups. They experienced high degrees of stress, struggled to cope individually and as a family unit, and experienced decision regret and conflict. CONCLUSION: Findings from this review suggest a significant impact on caregiver psychosocial well-being, but few quantitative studies investigated this dynamic with measures validated in this caregiver population. This review demonstrates the need for longitudinal studies using validated tools to assess the long-term impacts and outcomes of caregivers of the tracheostomy-dependent child.