Transition to self-management after pediatric heart transplant.

Context—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 po...

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Bibliographic Details
Published in:Progress in Transplantation Vol. 24; no. 3; pp. 226 - 234
Main Authors: Meaux, Julie B., Green, Angela, Nelson, Mary Kathryn, Huett, Amy, Boateng, Beatrice, Pye, Sherry, Schmid, Barbara, Berg, Alex, LaPorte, Kelci, Riley, Linda
Format: research tables/charts Journal Article
Published: Sage Publications Inc. Sep2014
Online Access:View this record in EBSCOhost
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      dt: Sep2014
      vid: 24
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      pub: Sage Publications Inc.
      place: Thousand Oaks, California
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        atl: Transition to self-management after pediatric heart transplant.
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          Meaux, Julie B.
          Green, Angela
          Nelson, Mary Kathryn
          Huett, Amy
          Boateng, Beatrice
          Pye, Sherry
          Schmid, Barbara
          Berg, Alex
          LaPorte, Kelci
          Riley, Linda
        affil: University of Central Arkansas, Conway
      sug:
        subj:
          Heart Transplantation
          Adolescent Health
          Transitional Care
          Self Care
          Human
          Qualitative Studies
          Descriptive Research
          Focus Groups
          Purposive Sample
          Adolescence
          Young Adult
          Parents
          Descriptive Statistics
          Thematic Analysis
          Female
          Male
          Pilot Studies
          Funding Source
          Adolescent: 13-18 years
          Female
          Male
      ab: Context—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. Design—Qualitative descriptive design, using online focus groups. Setting—Online focus groups using itracks, an online qualitative software program. Participants—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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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