Reaching Independence Through Forced Learning: Learning Processes and Illness Management in Parents of Children

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Linda Myrin Westesson1, Catarina Wallengren2,3, Fariba Baghaei1

  • 11 Sahlgrenska University Hospital, Gothenburg, Sweden.

Qualitative Health Research
|August 2, 2018
PubMed

Insights

Parents of children with hemophilia (a bleeding disorder) learn to manage the condition independently. This journey involves overcoming challenges and reducing reliance on healthcare professionals for daily care.

Area of Science:

  • Pediatric Hematology
  • Qualitative Health Research
  • Parental Education

Background:

  • Hemophilia management presents significant challenges for parents of newly diagnosed children.
  • The initial year of treatment requires intensive learning and adaptation for families.

Purpose of the Study:

  • To explore parents' learning processes and illness management strategies during the first year of their child's hemophilia treatment.
  • To understand the factors influencing parental adaptation and independence in managing hemophilia.

Main Methods:

  • A longitudinal qualitative design was employed.
  • Eight parents of four children with hemophilia were interviewed repeatedly over 12 to 14 months.
  • Grounded theory methodology was used to analyze the data.

Main Results:

  • The core category identified was 'reaching independence through forced learning'.
  • Parents were motivated by a desire for independence and regaining control over their lives.
  • A key incentive was reducing dependency on healthcare professionals.

Conclusions:

  • Early home treatment can mitigate the impact of hemophilia.
  • Healthcare professionals can support parents' learning and promote their independence through tailored support.
  • Facilitating parental independence is crucial for effective long-term hemophilia management.

Keywords:
Grounded TheoryLongitudinal StudiesQualitative MethodsBackgroundScandanaviaWestern Europechildrenfamiliesillness and diseasenursingpediatricqualitative

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