Highlights
- •Shifting management responsibility from parents to adolescents with SCD imposed adaptive-type challenges
- •Health care providers play a critical role in facilitating the progress toward more independent adolescent self-management
- •Future research is needed to develop and test interventions that facilitate shifting the management responsibility
Purpose
This study explored the challenges faced by adolescents with sickle cell disease (SCD)
and their parents and the work they engage in to progressively shift from parent management
to independent adolescent self-management.
Design and methods
A qualitative descriptive focus-group design with semi-structured interviews was used
with adolescents (11–18 years) with SCD (HbSS genotype) and their parents/primary
caregivers. Interviews were analyzed using content analysis.
Results
Two adolescent focus groups, with a total of 14 adolescents, and two parent focus
groups, with a total of 15 parents, described adaptive challenges. Adolescents' adaptive
challenges included mastering complex symptom management, communicating about SCD
and symptoms, and maintaining control. Parents' adaptive challenges included giving
over the complex management, communicating the management with the adolescent, balancing
protection against risk with fostering independence, changing a comfortable rhythm,
and releasing the adolescent into an "SCD-naive" world. Adolescents' adaptive work
included pushing back at parents, defaulting back to parental care, stepping up with
time, learning how SCD affects them, and educating friends about SCD. Parents' adaptive
work included engaging the adolescent in open dialogue and co-managing with the adolescent.
Conclusions
Shifting management responsibility from parents to adolescents imposes adaptive challenges
for both. Future research is needed to develop and test interventions that improve
adaptive capacity in adolescents and parents.
Practice implications
Health care providers need to assess the parent–child relationship and their progress
in shifting the management responsibility, facilitate discussions to arrive at a shared
understanding of the challenges, and collaborate on adaptive work to address these
challenges.
Key words
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Article info
Publication history
Published online: July 20, 2016
Accepted:
June 29,
2016
Received in revised form:
June 27,
2016
Received:
April 29,
2016
Identification
Copyright
© 2016 Elsevier Inc. All rights reserved.
