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“The Constant by Our Side”—Mothers' Experiences of Early Intervention Therapy Services for Infants With Emerging Signs of Complex Neurodevelopmental Difficulties

Gibbs, Deanna PhD; Harniess, Phillip MSc, MCSP; Crossley, Siew-Lian MSc

doi: 10.1097/IYC.0000000000000149
Original Research/Study

Infants who require admission to a neonatal unit and who ultimately present with complex neurodevelopmental difficulties often require more sustained engagement with early intervention services during admission and beyond. However, there is little research exploring families' experiences of early intervention (EI) therapy received throughout a neonatal unit admission and continuing through transition into the community setting. This study was designed to explore parents' perceptions of EI therapy for infants with complex emerging neurodevelopmental difficulties. Using a descriptive qualitative approach, interviews were conducted with 6 mothers whose infants had been admitted to a neonatal unit and were receiving EI therapy services for their child. Interviews were audio-recorded and transcribed and then thematically analyzed. Four key themes emerged articulating the parent experiences during their evolving relationship with therapy providers in the neonatal unit and following discharge: (a) a vulnerable start—adjusting to the unexpected; (b) becoming a mother—becoming a family; (c) the therapy journey; and (d) a new reality. Attributes that enhanced the developing parent–provider relationship were identified including the importance of developing collaborative communication styles, supporting families in developing their expectations of the parent–provider relationship, and ensuring clarity in the nature, scope, and contribution of EI therapy to their child and overall family development. Early introduction of EI therapists during an infant's admission to a neonatal unit can serve to strengthen the parent–provider relationship by offering a support continuum during a vulnerable time.

Nursing, Midwifery and Allied Health Professions, Barts Health NHS Trust, Whitechapel, United Kingdom (Dr Gibbs); School of Health Sciences, City, University of London, London, United Kingdom (Dr Gibbs); Great Ormond Street Hospital, National Institute of Health Research, Bloomsbury, London (Mr Harniess); UCL Institute of Education & Institute of Child Health, London, United Kingdom (Mr Harniess); and Homerton University Hospital and Hackney and the City Integrated Trust, London, United Kingdom (Ms Crossley).

Correspondence: Deanna Gibbs, PhD, Nursing, Midwifery and Allied Health Professions, Barts Health NHS Trust, Royal London Hospital, Whitechapel Rd, London E1 1BB, England (

The authors thank Niyati Patel and Jo Archard for their contribution to the development of the project, and the management teams at Homerton University Hospital and Hackney Ark. They are grateful to the parents who participated in the project and so generously shared their stories with them.

This research was supported by a small research grant from the Association of Paediatric Chartered Physiotherapists (UK).

The authors declare no conflict of interest.

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