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Bisphosphonate therapy and osteogenesis imperfecta: The lived experience of children and their mothers
Shirley Wiggins1, Rose Kreikemeier2
1University of Nebraska Medical Center College of Nursing, Lincoln, NE, USA.
Insights
Bisphosphonate therapy improves bone density and daily functioning for children with osteogenesis imperfecta (OI). This study explored the positive lived experiences of children with OI and their mothers undergoing this treatment.
Area of Science:
- Pediatric Genetics
- Pharmacology
- Qualitative Research
Background:
- Osteogenesis imperfecta (OI) is a genetic disorder causing brittle bones, fractures, pain, and mobility issues.
- Daily life for children with OI and their families is significantly impacted by the condition.
- Bisphosphonate therapy has shown potential in increasing bone density and improving symptoms in OI patients.
Purpose of the Study:
- To describe the lived experience of children with osteogenesis imperfecta (OI) undergoing bisphosphonate therapy.
- To explore the impact of bisphosphonate therapy on the daily lives of children with OI and their mothers.
Main Methods:
- Phenomenological study utilizing interviews.
- Purposive sample of six children (ages 6-18) with OI and their six mothers (N=12).
- Giorgi (2009) methodology to explore lived experiences with bisphosphonate infusion therapy.
Main Results:
- Four emergent themes described the impact of bisphosphonate therapy on daily life with OI.
- Themes included: 'living daily life in stride,' 'normalcy is living with uncertainty,' 'renewal with infusions,' and 'making choices and living with the consequences.'
- Findings highlight the multifaceted impact of therapy on patients' and families' lives.
Conclusions:
- Bisphosphonate therapy positively influences daily functioning and perceived normalcy for children with OI.
- Family-centered interventions and nursing support are crucial for managing OI and therapy transitions.
- Further research should focus on family-centered care models for chronic pediatric conditions.
Purpose:
Osteogenesis imperfecta (OI) is a chronic, genetic condition frequently described as "brittle bones." This condition is expressed by low bone density and characterized by frequent fractures with and without trauma. Additional symptoms include pain, altered growth, and challenges with mobility. This experience has a great impact on the daily life of the child diagnosed with OI and their family. With the introduction of bisphosphonate therapy children diagnosed with OI experienced an increase in bone density that included a change in symptoms and improvement in daily functioning. The purpose of this study was to describe the lived experience of children receiving bisphosphonate therapy for osteogenesis imperfecta (OI) and their mothers.
Design And Methods:
A phenomenological study was conducted using interviews with a purposive sample of six children diagnosed with OI and their six mothers (N = 12). Children ranged in age from 6 to 18 years. The Giorgi (2009) methodology was used to discover the meaning of living day to day since initiating the bisphosphonate infusion therapy.
Results:
Four themes emerged from the synthesis of the meaning units that reflected the experience that bisphosphonate therapy had on daily life with OI. These four themes explicitly described the phenomena being studied and included living daily life in stride; normalcy is living with uncertainty; renewal with infusions; and making choices and living with the consequences.
Practice Implications:
Nurses must take an active role in developing and promoting family-centered interventions for transition and support.
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