Self-management by adolescents and young adults following a stem cell transplant
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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.
|Review Type||None: Degree-based Submission|
|Evidence Level||Qualitative Study, Grounded Theory|
|Research Approach||Qualitative Research|
|Keywords||Stem Cell Transplant;
|CINAHL Subject(s)||Hematopoietic Stem Cell Transplantation;
Hematopoietic Stem Cell Transplantation--In Adolescence;
Self Care--In Adolescence;
Patient Compliance--In Adolescence;
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