The Transitional Experience of Family Caring for Their Child With a Tracheostomy

Abstract

The purpose of this qualitative study was to describe the family experience of caring for their child with a tracheostomy due to a compromised airway during the transition from hospital to home, and to identify types of support that families request to be successful caregivers. This study used a qualitative descriptive design with focus groups to answer semi-structured interview questions. The investigators followed basic content analysis to interpret descriptive data using three-person consensus. Eighteen family members participated. Four themes emerged: "This is not the life I had planned: coming to accept the new reality;" "Don't make the hospital your home; don't make your home a hospital;" "Caregivers engage with providers that demonstrate competence, confidence, attentiveness, and patience;" and "Participants value the opportunity to give back and help others." Growth in the family caregiver role leads to personal transformation demonstrated by increased confidence, finding joy from their child, becoming an advocate for their child, and a resource for others. Family members described the transition to being 'in charge,' the relationship with the provider, and being able to advocate for getting the resources they needed in the home. Relationships are as critical as teaching skills to families during hospitalization. Family members see considerable value in connecting with care providers. In addition, there is a desire to share their experience with other families that are beginning a similar journey. Participants requested a support approach that included competent providers, Web-based video education for skills training, family-to-family connection, and continued family group support after discharge.