The Impact of Severe Osteogenesis Imperfecta on the Lives of Young Patients and their Parents - A Qualitative Analysis

The Impact of Severe Osteogenesis Imperfecta on the Lives of Young Patients and their Parents - A Qualitative Analysis

The Impact of Severe Osteogenesis Imperfecta on the Lives of Young Patients and their Parents - A Qualitative Analysis

The Impact of Severe Osteogenesis Imperfecta on the Lives of Young Patients and their Parents - A Qualitative Analysiss

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BMC Pediatrics, vol. 13, no 153.

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1. Objectifs


Intentions :
«In this qualitative study, we therefore examined how adolescents and their parents experience living with severe OI [Osteogenesis imperfecta].» (p. 2)

2. Méthode


Échantillon/Matériau :
«This study was carried out at the Shriners Hospitals for Children in Montreal […] The first author conducted the one-on-one semi-structured interviews with the patients and their parents during regular follow-up visits at the hospital. » (p. 2) «We recruited twelve patients (9 female, 3 male) and 12 parents (8 mothers, 4 fathers).» (p. 3)

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé


«Our temporal analysis of the impact of severe OI on patients and their parents shows that most parents experienced a great shock at the moment of diagnosis. They then gradually adapted to a “new normal” life characterized by ups and downs along with professional, marital and social changes. These changes affected the whole family, particularly siblings. The patients did not experience an initial shock because they had been diagnosed with OI as newborns or toddlers. However, they realized that they were different from other children and started adapting to a life characterized by ups and downs and increased challenges. Over time, the parents and patients developed a positive mindset and started considering some experience arising from OI as beneficial. This temporal approach enhances our understanding of the impact of severe OI on parents and patients. Rather than being a frozen image of positive versus negative impacts, this study portrays the impact of severe OI as a process that changes over time. Such a conceptualization and the new insights it provides makes a valuable theoretical contribution by orienting future research on OI and other chronic genetic diseases.» (p. 7)