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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.

Project description:ObjectiveThe aim of this study was to examine parents' and healthcare professionals' experiences and perceptions of parental readiness for resuscitation of their child in a paediatric hospital.DesignThis exploratory descriptive qualitative study used content analysis. Participants shared their experiences and perceptions about parental readiness for cardiopulmonary resuscitation through semi-structured and in-depth interviews. MAXQDA 2020 software was also used for data analysis.SettingThe setting was two large teaching paediatric hospitals in Iran (Este Azerbaijan and Mashhad).ParticipantsParticipants were 10 parents and 13 paediatric healthcare professionals (8 nurses and 5 physicians). Selection criteria were: (a) parents who experienced their child's resuscitation crisis at least 3 months prior and (b) nurses and physicians who were working in emergency rooms or intensive care wards with at least 2 years of experience on the resuscitation team.ResultsParticipants shared their experiences about parental readiness for resuscitation of their child in four categories: awareness (acceptance of resuscitation and its consequences; providing information about the child's current condition and prognosis), chaos in providing information (defect of responsibility in informing; provide selective protection of information; hardness in obtaining information), providing situational information (honest information on the border of hope and hopeless; providing information with apathy; providing information as individual; dualism in blaming; assurance to parents; presence of parents to better understand the child's situation) and psychological and spiritual requirements (reliance on supernatural power; need for access to a psychologist; sharing emotions; collecting mementos).ConclusionThe results of this study provide insight on the needs of parents and strategies to use to prepare them for their child's resuscitation crisis, which can be used to enhance family centred care practices in paediatric acute care settings.

Project description:Introduction: With increasing utility and decreasing cost of genomic sequencing, augmentation of standard newborn screening (NBS) programs with newborn genomic sequencing (nGS) has been proposed. Before nGS can be integrated into newborn screening, parents' perspectives must be better understood. Objective: Using data from surveys administered to parents of healthy newborns who were enrolled in the BabySeq Project, a randomized clinical trial of nGS alongside NBS, this paper reports parents' attitudes regarding population-based NBS and nGS assessed 3 months after results disclosure. Methods: Parental attitudes regarding whether all newborns should receive, and whether informed consent should be required for, NBS and nGS, as well as whether nGS should be mandated were assessed using 5-point scales from strongly disagree (=1) to strongly agree (=5). Parents' interest in receiving types of results from nGS was assessed on a 5-point scale from not at all interested (=1) to very interested (=5). Survey responses were analyzed using Fisher's exact tests, paired t-tests, and repeated measures ANOVA. Results: At 3 months post-disclosure, 248 parents of 174 healthy newborns submitted a survey. Support for every newborn receiving standard NBS (mean 4.67) was higher than that for every newborn receiving nGS (mean 3.60; p < 0.001). Support for required informed consent for NBS (mean 3.44) was lower than that for nGS (mean 4.27, p < 0.001). Parents' attitudes toward NBS and nGS were not significantly associated with self-reported political orientation. If hypothetically receiving nGS outside of the BabySeq Project, most parents reported being very interested in receiving information on their baby's risk of developing a disease in childhood that can be prevented, treated, or cured (86.8%) and their risk of developing a disease during adulthood that can be prevented, treated, or cured (84.6%). Discussion: Parents' opinions are crucial to inform design and delivery of public health programs, as the success of the program hinges on parents' trust and participation. To accommodate parents' preferences without affecting the current high participation rates in NBS, an optional add-on consent to nGS in addition to NBS may be a feasible approach. Trial Registration ClinicalTrials.gov Identifier: NCT02422511.

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

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

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