Edinburgh Napier University

  Background: Developmental Dysplasia of the Hip (DDH) is a generic term which refers to a developmental bone disorder, in which the femoral head of the femur bone and the acetabulum within the pelvis does not fully develop and dislocates. It is important to diagnose and treat DDH when a child is young, in order to prevent long-term morbidity problems which can present in adulthood, such as a walking disability or chronic back pain. The gold standard treatment for infants under six months old for DDH is the application of a Pavlik harness. Moreover, treatment at this young age gives the infant a positive prognosis. A review of the literature indicated a paucity of research focusing on the in-depth experiences of parents caring for their infant with DDH. More knowledge and understanding is required to inform health professionals how to improve the healthcare experience for parents using DDH outpatient hospital clinics.

Aim: To explore the experiences of parents of infants who have been diagnosed with DDH and undergone treatment for the condition.

Methods: Nine mothers and nine fathers were recruited to the study through a DDH charity’s social media platform. Taking a qualitative approach, using Interpretative Phenomenological Analysis (IPA), data was collected through semi-structured interviews.

Findings: From the interviews with mothers, two superordinate themes, ‘struggling with empowerment and disempowerment of care over the infant’ and ‘relationship dynamics’ emerged from the data. From the fathers’ interviews, there was one superordinate theme, ‘Managing the disrupted family’. When the experiences of mothers and fathers caring for their infant with DDH were compared, seven themes encapsulated the phenomenon.

Conclusions: This study offers original insight into the lived experience of parents with infant with DDH. It argues that parents psychologically struggled with the diagnosis and initial care of their infant in a Pavlik harness; the paternalistic model of healthcare appears to still exist in DDH outpatient clinics; mothers and fathers have differing carer support needs; fathers needed support and experienced inequality in these DDH clinics. A new conceptual term, ‘biographical revision to the new father role’ was coined to reflect the experiences of fathers in this study. Also, this study argues that by embedding the principles and practice of family centred care (FCC) could counterbalance any bio-medical power imbalance and any gender power imbalance. Health practitioners were pivotal to the parental experience. Their enhanced interpersonal skills could provide psychological support and empower self-efficacy among parents caring for an infant with DDH. Furthermore, the comparative findings of the parental experience contribute to a theoretical model of parental resilience. Realistic recommendations are offered for multi-disciplinarily policy, practice and healthcare education, as well as areas for further research.