The FOUNDATION study “Follow-Up for NeuroDevelopmentally AT risk Infants Of Neonatal care”- a qualitative study on the views of parents and caregivers

Komoriyama, A
(2017) The FOUNDATION study “Follow-Up for NeuroDevelopmentally AT risk Infants Of Neonatal care”- a qualitative study on the views of parents and caregivers. Master of Philosophy thesis, University of Liverpool.

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Introduction: Infants born prematurely or who have had neurological complications are at increased risk of neurodevelopmental disorders. Early identification of infants with signs of neurodevelopmental delay is crucial to achieve their full developmental potentials. Currently, there is variable guidance on the follow up and referral process for such children. Little information is available on the needs of patients, families and health care of professionals regarding current practice and experience of follow-up. Aims: To understand the present situation, the perceptions, and the views of parents and professionals who look after high-risk infants discharged from the NICU in relation to neurodevelopmental follow-up. Methods: We undertook a qualitative study within the Mersey region using in-depth interviews with 23 parents of children, aged 0 to 3, born prematurely or with hypoxic ischaemic encephalopathy. We also undertook 11 in-depth interviews with doctors, nurses, and allied health professionals involved in the follow-up of at-risk infants. Results: Five themes were identified: (1) What, (2) How, (3) Who, (4) When and (5) Capacity of the health care system. Most parents wanted preparation for a diagnosis and the future, and they appreciated a realistic and honest approach by professionals. Parents perceived that neonatologists tended to focus on short-term management and were reluctant to discuss long-term developmental outcomes with parents to avoid reducing the joy of having a baby. Long-term parental emotional support was felt to be neglected and many parents wanted to be offered counselling services. The lack of a standard referral process and variable care pathways frustrated both parents and professionals. Conclusion: The quantity, content and quality of information given to parents at the hospital as well as in the community should be revised. More information on the risks of having developmental problems in high-risk children should be given. Many parents felt anxious and depressed and some mothers had mental health problems such as panic attacks and post traumatic disorders. Professionals should provide increased emotional support on the NICU and throughout follow-ups.

Item Type: Thesis (Master of Philosophy)
Divisions: Faculty of Health and Life Sciences > Faculty of Health and Life Sciences
Depositing User: Symplectic Admin
Date Deposited: 14 Dec 2017 15:35
Last Modified: 16 Jan 2024 17:21
DOI: 10.17638/03009635