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Parental experiences of a diagnosis of neonatal diabetes and perceptions of newborn screening for glucose: a qualitative study.

ABSTRACT: Neonatal diabetes presents <6 months of life but delays in recognition result in presentation with life-threatening hyperglycaemia/diabetic ketoacidosis. Early identification and rapid genetic diagnosis is crucial and ensures correct treatment/management. Adding 'glucose' to newborn bloodspot screening (NBS) could aid prompt detection but requires evidence of parental acceptance. OBJECTIVES:Increase understanding of parental experience of presentation/recognition of neonatal diabetes and perceptions of glucose testing within NBS. SETTING:UK families confirmed with a genetic diagnosis of neonatal diabetes, November 2014-2018, were invited to participate. PARTICIPANTS:In-depth qualitative interviews were conducted with 10 parents of 14 children. 8 had transient neonatal diabetes: KCNJ11 (n=5), ABCC8 (n=1), 6q24 (n=2), 6 had permanent neonatal diabetes: KCNJ11 (n=4), INS (n=1), homozygous GCK (n=1). PRIMARY AND SECONDARY OUTCOME MEASURES:Interviews audio recorded, transcribed and subjected to thematic content analysis. RESULTS:3 key themes emerged:Babies were extremely ill at hospital admission, with extended stays in intensive care required.Identification of diabetes was not 'standardised' and perceived a 'chance' finding.Adding glucose to NBS was universally considered extremely positive. CONCLUSIONS:Diagnosis of neonatal diabetes is frequently delayed, resulting in critically ill presentation with prolonged intensive care support, additional healthcare costs and familial distress. Potential to detect hyperglycaemia earlier was universally endorsed by parents with no negative consequences identified. Although further study including a larger number of individuals is needed to confirm our findings this study provides the first evidence of acceptability of glucose testing fulfilling Wilson-Jungner criteria for implementation within the NBS programme.

SUBMITTER: Shepherd M

PROVIDER: S-EPMC7643500 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Parental experiences of a diagnosis of neonatal diabetes and perceptions of newborn screening for glucose: a qualitative study.

Shepherd Maggie M Knight Bridget A BA Laskey Katherine K McDonald Timothy James TJ

BMJ open 20201104 11

Neonatal diabetes presents <6 months of life but delays in recognition result in presentation with life-threatening hyperglycaemia/diabetic ketoacidosis. Early identification and rapid genetic diagnosis is crucial and ensures correct treatment/management. Adding 'glucose' to newborn bloodspot screening (NBS) could aid prompt detection but requires evidence of parental acceptance.<h4>Objectives</h4>Increase understanding of parental experience of presentation/recognition of neonatal diabetes and ...[more]

PMID: 33148726

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Project description:BackgroundNeonatal mortality accounts for nearly three quarters of all infant deaths in Vietnam. The nursing team are the largest professional group working with newborns, however do not routinely receive neonatal training and there is a lack of research into the impact of educational provision. This study explored changes in nursing perceptions towards their role following a neonatal educational intervention. Parents perceptions of nursing care were explored to determine any changes as nurses gained more experience.MethodSemi-Structured qualitative interviews were conducted every 6 months over an 18 month period with 16 nurses. At each time point, parents whose infant was resident on the neonatal unit were invited to participate in an interview to explore their experiences of nursing care. A total of 67 parents participated over 18 months. Interviews were conducted and transcribed in Vietnamese before translation into English for manifest content analysis facilitated by NVivo V14.ResultsAnalysis of nursing transcripts identified 14 basic categories which could be grouped (23) into 3 themes: (1) perceptions of the role of the neonatal nurse, (2) perception of the parental role and (3) professional recollections. Analysis of parent transcripts identified 14 basic categories which could be grouped into 3 themes: (1) information sharing, (2) participation in care, and (3) personal experience.ConclusionsQualitative interviews highlighted the short term effect that the introduction of an educational intervention can have on both nursing attitudes towards and parental experience of care in one neonatal unit in central Vietnam. Nurses shared a growing awareness of their role along with its ethical issues and challenges, whilst parents discussed their overall desire for more participation in their infants care. Further research is required to determine the long term impact of the intervention, the ability of nurses to translate knowledge into clinical practice through assessment of nursing knowledge and competence, and the impact and needs of parents. A greater understanding will allow us to continue to improve the experiences of nurses and parents, and highlight how these areas may contribute towards the reduction of infant mortality and morbidity in Vietnam.

Dataset Information

Parental experiences of a diagnosis of neonatal diabetes and perceptions of newborn screening for glucose: a qualitative study.

Publications

Parental experiences of a diagnosis of neonatal diabetes and perceptions of newborn screening for glucose: a qualitative study.

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