title: 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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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."
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Clinical Care Management Unit, Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary, Boston, MA. Electronic address: kcallans@partners.org.
authors.forename: Kevin Mary
authors.initials: KM
authors.lastname: Callans
authors.affiliation: Patient Care Services, Massachusetts General Hospital, Boston MA.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Bleiler
authors.affiliation: Yvonne L. Munn Center for Nursing Research, Massachusetts General Hospital, Boston MA and Boston College, Chestnut Hill MA.
authors.forename: Jane
authors.initials: J
authors.lastname: Flanagan
authors.affiliation: Yvonne L. Munn Center for Nursing Research, Massachusetts General Hospital, Boston MA.
authors.forename: Diane L
authors.initials: DL
authors.lastname: Carroll
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D020380:Needs Assessment; D010351:Patient Discharge; D036301:Qualitative Research; D011788:Quality of Life; D018570:Risk Assessment; D013315:Stress, Psychological / Q000453:epidemiology* / Q000503:physiopathology; D011795:Surveys and Questionnaires; D014139:Tracheostomy / Q000451:nursing*; D000069341:Transitional Care
keywords: Family experience; Technology-dependent children; Tracheostomy