P2.G125: Caregiver emotional wellbeing: experiences from tracheostomy decision making for infants with severe bronchopulmonary dysplasia

Background: In children with severe bronchopulmonary dysplasia (BPD), the decision whether to perform tracheostomy for long-term mechanical ventilation is often difficult for caregivers due to the child’s comorbidities, unclear long-term outcomes, and tracheostomy care needs including physical, emotional, social, and financial resources. With most at home care being provided by caregivers, the impact of tracheostomy on caregiver well-being could be immense but is currently not well understood. The objective of our study is to describe how tracheostomy decision-making influences caregiver emotional well-being for children with severe BPD.

Methods: We conducted a convergent mixed-methods study of semi-structured interviews and surveys of caregiver well-being during decision making for children with severe BPD. We recruited English- and Spanish-speaking adult caregivers of children with severe BPD who were >/=6 months from the decision. Interview topics included resources that supported or could have supported well-being, effects of the decision on caregivers today, and advice for other caregivers. Surveys include sociodemographics, system support, validated survey outcome measures for decisional conflict (0-low conflict, 100-high conflict), health literacy (0- high literacy, 20- low literacy), and caregiver burden’s effect on emotional and physical health (0-low, 30-high effect), and new items on self-rated emotional well-being immediately after the decision and currently (1- poor well-being, 10- superior well-being). Two independent coders analyzed interview transcripts using grounded theory. Serial coding reviews were used to iteratively develop and refine the codebook and generate themes. Larger team meetings will be used to refine final themes. Interviews will be continued until thematic saturation.

Results: We interviewed n=15 caregivers: median age 32 years, 86% female, 86% Caucasian, 29% Hispanic/Latino, median decisional conflict score 15.
Preliminary themes include: 1) Caregiver well-being improved through reassurance provided by consistent care team members (primary nurses, palliative care), who increased understanding of and advocacy for the child during tracheostomy decision making process. 2) The lived experiences shared by other families with tracheostomy provided the biggest benefit to emotional well-being by addressing caregiver knowledge gaps. 3) Uncertainty around the child’s future quality-of-life and stress in managing the numerous care responsibilities worsened caregiver well-being. 4) Caregivers boosted emotional well-being through self-care techniques such as exercise, journaling, and alternating caregiving responsibilities with family. 5) Caregiver well-being improved over time as they saw their child grow, develop, and reach milestones they didn’t think were possible. These experiences reaffirmed their decision to undergo tracheostomy.

Conclusion: The effects on emotional wellbeing of caring for a medically complex child are dynamic and multifaceted. The biggest contributors to poor emotional wellbeing were stress from caregiving responsibilities and uncertainty in the child’s quality of life and long-term trajectory. Potential opportunities to mitigate these negative effects include dedicated time for self-care including the use of alternate caregivers and consistent care teams.