P30 Exploring the experience of parents receiving a newborn diagnosis of developmental dysplasia of the hip. (June 2019)

• Record Type: Journal Article
• Authors: Jennings, Heather; Gooney, Martina; O'Beirne, Joseph; Sheahan, Linda
• Is Part Of: Archives of disease in childhood. Volume 104:Supplement 3(2019)
• Page Start: A167
• Page End: A167
• Publication Date: 2019-06
• Subjects: Infants -- Diseases -- Periodicals; Newborn infants -- Diseases -- Periodicals; Fetus -- Diseases -- Periodicals; 618.920105
• DOI: 10.1136/archdischild-2019-epa.385
• Languages: English
• ISSNs: 1359-2998

Abstract

Abstract : Developmental dysplasia of the hip (DDH) represents a spectrum of anatomic abnormalities in which the femoral head and the acetabulum are aligned improperly or grow abnormally. It is generally acknowledged that the rationale behind screening for DDH is that earlier diagnosis will lead to simpler treatments resulting in better outcomes and minimising the need for open surgery. Additionally, the condition and subsequent treatment for DDH poses significant challenges for parents and impacts on many aspects of parent, child and family lives. To date, there are no national guidelines or algorithms in relation to the screening or management of DDH in The Republic of Ireland. The aim of this research was to explore the detection and care of infants with developmental dysplasia of the hip. Mixed methods sequential explanatory design was utilised over three phases with the intention of exploring the quality of health care outcomes and the provision of DDH services from the perspectives of the parents in receipt of care for their newly diagnosed infants. The results of Phase three which involved semi-structured interviews with parents ( n =11) will be presented here. An inductive thematic analysis approach was used to analyse the data from the semi-structured interviews. One of the most striking results to emerge from the data was the overall lack of awareness amongst parents concerning DDH and the lack of hip health-related information given to parents prior to the diagnosis of their children. This lack of awareness and education of parents during the antenatal and postnatal period, in turn, resulted in the diagnosis and subsequent treatment of their child for DDH, being a traumatic experience for the majority of parents in the study. Some common parental anxieties amongst the participants were in relation to issues such as fear of their child being in pain; the management of skin care issues while their child was in treatment and fear of long-term disability. However, on the whole, there was an overall high satisfaction rate amongst the participants in relation to the quality of the service provided by the dedicated DDH clinic. Evidence relating to the reality of receiving a diagnosis of DDH as a parent or caring for a child in treatment has not been previously researched in Ireland. Recommendations include the need for a more family centred approach to how health care professionals practically and psychologically support families through the diagnosis and treatment of DDH.