title: Transition to self-management after pediatric heart transplant.
abstract: BACKGROUND
  Little is known about adolescent transition to self-management after heart transplant. This gap in knowledge is critically important because the consequences of poor self-management are costly and life-threatening, often resulting in nonadherence, rejection, repeated hospitalizations, and poor quality of life.
  
  
  OBJECTIVE
  To explore how adolescents and parents perceive their roles in self-management, and how adolescents integrate self-management into their daily lives and navigate the transition from parent-dominated to self-management.
  
  
  METHODS
  Qualitative descriptive design, using online focus groups.
  
  
  METHODS
  Online focus groups using itracks, an online qualitative software program.
  
  
  METHODS
  A purposive sample of 4 adolescents, 13 to 21 years old, who were at least 6 months posttransplant, and of 6 parents of adolescent heart transplant recipients.
  
  
  RESULTS
  Several parallel themes emerged from the parent and adolescent online focus groups. Managing medications was the predominant theme for both parents and adolescents. For the remaining themes, parents and adolescents expressed similar ideas that were categorized into parallel themes, which included staying on top of things/becoming independent, letting them be normal/being normal, and worries and stressors.
  
  
  CONCLUSIONS
  The transition to self-management after heart transplant was a clear goal for both parents and adolescents. The transition is a shared responsibility between parents and adolescents with a gradual shift from parent-directed to self-management. The process of transition was not linear or smooth, and in several instances, parents described efforts to transfer responsibility to the adolescent only to take it back when complications arose. Additional research with a larger sample is needed in order to fully understand adolescent heart transplant recipients' transition to self-management.
authors.affiliation: University of Central Arkansas, Conway.
authors.forename: Julie B
authors.initials: JB
authors.lastname: Meaux
authors.affiliation: Arkansas Children's Hospital University of Arkansas for Medical Sciences.
authors.forename: Angela
authors.initials: A
authors.lastname: Green
authors.affiliation: Arkansas Children's Hospital.
authors.forename: Mary Kathryn
authors.initials: MK
authors.lastname: Nelson
authors.affiliation: Arkansas Children's Hospital.
authors.forename: Amy
authors.initials: A
authors.lastname: Huett
authors.affiliation: University of Arkansas for Medical Sciences.
authors.forename: Beatrice
authors.initials: B
authors.lastname: Boateng
authors.affiliation: Arkansas Children's Hospital.
authors.forename: Sherry
authors.initials: S
authors.lastname: Pye
authors.affiliation: Arkansas Children's Hospital.
authors.forename: Barbara
authors.initials: B
authors.lastname: Schmid
authors.affiliation: Little Rock, Arkansas, Children's Healthcare of Atlanta, Georgia.
authors.forename: Alex
authors.initials: A
authors.lastname: Berg
authors.affiliation: Little Rock, Arkansas, Children's Healthcare of Atlanta, Georgia.
authors.forename: Kelci
authors.initials: K
authors.lastname: LaPorte
authors.affiliation: Little Rock, Arkansas, Children's Healthcare of Atlanta, Georgia.
authors.forename: Linda
authors.initials: L
authors.lastname: Riley
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000293:Adolescent; D005260:Female; D017144:Focus Groups; D006040:Goals; D016027:Heart Transplantation / Q000523:psychology*; D006801:Humans; D020407:Internet; D008297:Male; D010287:Parent-Child Relations; D000297:Psychology, Adolescent; D036301:Qualitative Research; D011788:Quality of Life; D012648:Self Care / Q000379:methods* / Q000523:psychology*; D055815:Young Adult