6.3.2 The arrival of the baby born with down syndrome: Parents' lived experience of the post natal period (207)

Roja Sooben, Senior Lecturer, Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, United Kingdom r.d.sooben@herts.ac.uk

Abstract:

Background:

This empirical study is set within the context of the UK National Antenatal Screening Programme for Down syndrome. Ethics approval for the study was obtained in December 2001 from the University Ethics Committee where the researcher is an employee and the study data was gathered during March-July 2002.

Aims:

The overarching aim of the study was to gain an insight into the lived experience of parents during their postnatal care period. The focus of the conference presentation will be to present the key research findings, including a brief discussion of the implications and limitations of the study.

Method:

A phenomenological inquiry involving 10 parents was undertaken by means of unstructured interviews (Kvale, 1996). The participants were parents whose children were born with Down syndrome, and the invitation to participate in the study was made via the Down Syndrome Association.

Findings:

Parents had limited opportunities to talk about the needs of their new born babies as healthcare professionals were perceived to be embarrassed or lacking in knowledge about Down syndrome. Parents felt that practical advice and emotional support to cope with their new experience was inadequate. The essence of the research findings points to an unequivocal message that the newborn with Down syndrome was not considered as having healthcare needs like any other baby.

Conclusions:

The lack of balanced information to parents about Down syndrome raises a number of implications for maternity care policy, practice and healthcare education, particularly if one of the key aims of the policy is to prepare new parents for the arrival of their child (UK National Screening Committee, 2001). This study will serve to inform new ways in effectively preparing future parents and contribute to contemporary healthcare issues that ‘ignorance’ of the needs of people with learning disabilities generally may have a serious impact upon their quality of life (MENCAP, 2007.).

Source of Funding: UK - Higher Education Institution

Amount in Funding: 1,000 - 10,000

Biography:

Roja D.Sooben Roja Sooben is a Senior Lecturer in the School of Nursing & Midwifery at the University of Hertfordshire. Her academic work involves teaching and providing support mainly to students on the Learning Disabilities nursing programmes. She has a particular interest in teaching ethics and research within the field of learning disabilities. Roja’s professional background is in Learning Disability Nursing and prior to her present teaching post she was involved for ten years in the direct care of people with learning disabilities. In 1992 she undertook an MA in Healthcare Ethics and recently completed her PhD in Education at the Institute of Education, University of London. September 2007.