Shaping and managing the course of a child's disease: parental experiences with osteogenesis imperfecta
Maman Joyce Dogba1, Frank Rauch1, Ghislaine Tre2
1Shriners Hospital for Children, 1529 Cedar Avenue, Montreal, QC, Canada H3G 1A6.
Insights
Parents navigate childhood Osteogenesis Imperfecta (OI) through four stages: reaction, acceptance, normalization, and delegation. Understanding these phases improves support for children with this rare genetic bone fragility disorder.
Area of Science:
- Pediatric Orthopedics
- Rare Genetic Diseases
- Child Psychology
Background:
- Osteogenesis Imperfecta (OI) is a rare genetic disorder causing brittle bones.
- Parental management of childhood rare genetic diseases is under-researched.
- Understanding parental experiences is crucial for effective care.
Purpose of the Study:
- To examine how parents manage children with Osteogenesis Imperfecta (OI) over time.
- To understand parental responses to both severe and mild OI.
- To provide an in-depth perspective on parental coping strategies for OI.
Main Methods:
- Interpretative description methodology.
- Semi-structured interviews with 48 parents of children with OI.
- Study conducted in a pediatric orthopedic hospital in Montreal, Canada.
Main Results:
- Parental responses encompass feelings and actions, evolving through four distinct phases: initial reaction, acceptance, normalization, and passing the baton.
- Each phase is influenced by the severity of OI, parental characteristics, daily experiences, and social support.
- The progression through these stages impacts subsequent parental responses and the child's overall coping.
Conclusions:
- This research enhances understanding of parental responses to Osteogenesis Imperfecta.
- Findings can inform strategies to improve parental support and consequently, the child's coping mechanisms.
- Emphasizes the dynamic nature of parental adaptation to childhood rare genetic conditions.
Background:
Osteogenesis imperfecta (OI), a rare genetic disease, causes increased bone fragility. The course of childhood chronic conditions particularly rare genetic diseases can be modified by both child and parents. However with limited research, shaping and managing that process is not well understood.
Objective:
Here we examine how parents of children with severe and mild OI have shaped and managed the condition of their child over time. Our goal is to provide a in-depth understanding of parental responses to OI.
Methods:
This study was carried out in a pediatric orthopedic hospital located in Montreal, Canada. Using the principles of interpretative description, we conducted semi-structured interviews with 48 parents of children diagnosed with OI.
Results:
We found that parental responses to their child' disease are constituted by their feelings and their actions. These responses changed over time. We can report four successive phases: an initial reaction, acceptance, normalization and passing the baton. Each stage affected subsequent stages. Every stage was influenced by the severity of OI, parents' individual characteristics, their day-to-day experiences and the entourage.
Conclusion:
Our study contributes to increased understanding of parental responses to OI and to improved parental responses and ultimately the child's coping.
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