Self-management by Adolescents and Young Adults Following a Stem Cell Transplant

2.50
Hdl Handle:
http://hdl.handle.net/10755/621196
Category:
Full-text
Format:
Text-based Document
Type:
Dissertation
Level of Evidence:
Qualitative Study, Grounded Theory
Research Approach:
Qualitative Research
Title:
Self-management by Adolescents and Young Adults Following a Stem Cell Transplant
Author(s):
Morrison, Caroline F.
Additional Author Information:
Caroline F. Morrison, MSN
Advisors:
Martsolf, Donna
Degree:
PhD
Degree Year:
2016
Grantor:
University of Cincinnati
Abstract:

Background: Stem cell transplant (SCT) is a major life event that affects not only the adolescents and young adults (AYA) receiving SCT but also the entire family. Patients are prescribed complex care regimens for disease treatment and to prevent life-threatening complications. AYA are particularly at risk for self-management difficulties as they are developmentally working to achieve independence from adults and may be more likely to act in ways that are contrary to the recommendations of healthcare providers.

Purpose: A grounded theory study was conducted to better understand the process AYA use to manage their care following a SCT. Specific aims included: 1) to explore self-management facilitators, barriers, processes and behaviors within individual, family, community and healthcare system domains using the pediatric self-management framework to develop initial interview guides; 2) to describe how AYA manage their care regimen post HSCT; and 3) to describe rates of oral medication adherence for AYA post HSCT and how they relate to patterns of self-management.

Methods: Semi-structured interviews were conducted with a sample of 17 AYA (13-25 years at SCT) and 13 of their caregivers after discharge following a SCT. Interviews were coded to consensus by the research team and analyzed using constant comparison methods. A subset of the sample (n=4) participated in electronic oral medication adherence monitoring.

Results: As data emerged the conceptualization of how adherence and self-management was viewed and experienced by AYA and caregivers was best characterized by the journey Dorothy took in the Wizard of Oz. Initially the patients and caregivers experienced a tornado of activities, information, and emotions but with the aid of family, friends and healthcare providers, families are empowered to manage their care, maintain a positive attitude and approach aiii “normal” life as they travel the yellow brick road to recovery. Oral medication tracking showed near perfect adherence, but small rebellions in isolation precautions were self-reported.

Conclusion: Study participants were unable to disassociate self-management activities from the SCT experience. When working with AYA undergoing SCT on self-management, healthcare providers should take into account the patient experience and psychosocial needs. Nurses play an instrumental role in AYA self-management practices following SCT by providing information, education, and social support.

Keywords:
Stem Cell Transplant; adolescent self-care
CINAHL Headings:
Hematopoietic Stem Cell Transplantation; Hematopoietic Stem Cell Transplantation--In Adolescence; Self Care; Self Care--In Adolescence; Young Adult; Stem Cells--Transplantation; Patient Compliance; Patient Compliance--In Adolescence
Sponsors:
The DAISY Foundation
Note:
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
Repository Posting Date:
2017-01-23T20:10:38Z
Date of Publication:
2017-01-23

Full metadata record

DC FieldValue Language
dc.contributor.advisorMartsolf, Donnaen
dc.contributor.authorMorrison, Caroline F.en
dc.date.accessioned2017-01-23T20:10:38Z-
dc.date.available2017-01-23T20:10:38Z-
dc.date.issued2017-01-23-
dc.identifier.urihttp://hdl.handle.net/10755/621196-
dc.description.abstract<p>Background: Stem cell transplant (SCT) is a major life event that affects not only the adolescents and young adults (AYA) receiving SCT but also the entire family. Patients are prescribed complex care regimens for disease treatment and to prevent life-threatening complications. AYA are particularly at risk for self-management difficulties as they are developmentally working to achieve independence from adults and may be more likely to act in ways that are contrary to the recommendations of healthcare providers.</p> <p>Purpose: A grounded theory study was conducted to better understand the process AYA use to manage their care following a SCT. Specific aims included: 1) to explore self-management facilitators, barriers, processes and behaviors within individual, family, community and healthcare system domains using the pediatric self-management framework to develop initial interview guides; 2) to describe how AYA manage their care regimen post HSCT; and 3) to describe rates of oral medication adherence for AYA post HSCT and how they relate to patterns of self-management.</p> <p>Methods: Semi-structured interviews were conducted with a sample of 17 AYA (13-25 years at SCT) and 13 of their caregivers after discharge following a SCT. Interviews were coded to consensus by the research team and analyzed using constant comparison methods. A subset of the sample (n=4) participated in electronic oral medication adherence monitoring.</p> <p>Results: As data emerged the conceptualization of how adherence and self-management was viewed and experienced by AYA and caregivers was best characterized by the journey Dorothy took in the Wizard of Oz. Initially the patients and caregivers experienced a tornado of activities, information, and emotions but with the aid of family, friends and healthcare providers, families are empowered to manage their care, maintain a positive attitude and approach aiii “normal” life as they travel the yellow brick road to recovery. Oral medication tracking showed near perfect adherence, but small rebellions in isolation precautions were self-reported.</p> <p>Conclusion: Study participants were unable to disassociate self-management activities from the SCT experience. When working with AYA undergoing SCT on self-management, healthcare providers should take into account the patient experience and psychosocial needs. Nurses play an instrumental role in AYA self-management practices following SCT by providing information, education, and social support.</p>en
dc.description.sponsorshipThe DAISY Foundationen
dc.formatText-based Documenten
dc.language.isoen_USen
dc.subjectStem Cell Transplanten
dc.subjectadolescent self-careen
dc.titleSelf-management by Adolescents and Young Adults Following a Stem Cell Transplanten_US
dc.typeDissertationen
thesis.degree.grantorUniversity of Cincinnatien
thesis.degree.levelPhDen
dc.description.noteThis item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.en
dc.primary-author.detailsCaroline F. Morrison, MSNen
thesis.degree.year2016en
dc.type.categoryFull-texten
dc.evidence.levelQualitative Study, Grounded Theoryen
dc.research.approachQualitative Researchen
dc.subject.cinahlHematopoietic Stem Cell Transplantationen
dc.subject.cinahlHematopoietic Stem Cell Transplantation--In Adolescenceen
dc.subject.cinahlSelf Careen
dc.subject.cinahlSelf Care--In Adolescenceen
dc.subject.cinahlYoung Adulten
dc.subject.cinahlStem Cells--Transplantationen
dc.subject.cinahlPatient Complianceen
dc.subject.cinahlPatient Compliance--In Adolescenceen
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