Searchable abstracts of presentations at key conferences on calcified tissues
Bone Abstracts (2017) 6 P196 | DOI: 10.1530/boneabs.6.P196

ICCBH2017 Poster Presentations (1) (209 abstracts)

A qualitative enquiry examining the lived experience of mothers who have children with osteogenesis imperfecta

Caroline Marr 1,

1The University of Sheffield, Sheffield, UK; 2Sheffield Children’s NHS Foundation Trust, Sheffield, UK.

Osteogeneses Imperfecta (OI) is a skeletal dysplasia which affects collagen biosynthesis. As with other chronic conditions it is recognised that the heterogeneity of perspectives between parents and health care professionals (HCP) can alter the course of a child’s health outcomes irrespective of the child’s disease. This qualitative study was employed to explore a mother’s lived experience of having a child with OI.

Objectives: To gain improved understanding through qualitative semi-structured interviews a mother’s lived experience of having a child with OI. This includes a mother’s expectations for her child, both now and in the future; the relationships the mother has both within and outside the family unit; and a mothers’ own experience and perceptions of OI. To use template analysis to identify and explore factors that influence a mother’s expectations for her child. Contrasting these expectations depending on the mother’s personal experience of the condition.

Method: A qualitative methodology was employed. Eight mothers were purposefully sampled. The sample size was derived from previous qualitative research in the area of interest. Each mother completed a semi-structured interview, which was digitally recorded and transcribe verbatim. The transcripts were analysed using template analysis. Ethical approval was obtained from the School of Health and Related Research Ethics Committee at the University of Sheffield.

Results: The analysis reviled four higher level themes: the multi-faceted role of mothers; a mother’s comprehension of OI; a mother’s relationship’s and a mother’s contemplation of the future. These four higher level themes were all permeated by the integrated theme of balance.

Conclusion: The findings echoed research conducted in other chronic conditions. However the mothers desire to decrease fracture risk seems to be unique to OI. The research suggests that HCP’s should recognise how a mother’s own perception of OI, established from the relationships she constructs and her own experiences and understanding of the condition, impacts upon her expectations for her child. This study is trustworthy and creditable but lacks some transferability. Future studies should include a larger cohort and review of the phenomenon family’s perspective.

Disclosure: The authors declared no competing interests.

Volume 6

8th International Conference on Children's Bone Health


Browse other volumes

Article tools

My recent searches

No recent searches.