Dataset Information

Parent-to-parent support interventions for parents of babies cared for in a neonatal unit-protocol of a systematic review of qualitative and quantitative evidence.

ABSTRACT:

Background

Parents of babies admitted to neonatal units experience an arduous emotional journey. Feelings of helplessness, fear, sadness, guilt, grief and anger are common. These feelings can lead to anxiety, depression and post-traumatic stress which may persist long after discharge from the unit. Support from a parent with first-hand experience able to empathise with problems and challenges may help. This systematic review will identify quantitative and qualitative evidence to address the role of parent-to-parent support interventions for families of babies cared for in neonatal units, and combine the findings in an integrated synthesis.

Methods

We are working in collaboration with a study-specific Parent Advisory Group (PAG) of parents who have relevant and varied lived experience of having a baby in neonatal care and those who have been involved in providing peer support. With the PAG, we will carry out a systematic review bringing together all existing research on parent-to-parent support for parents of babies cared for in neonatal units. This will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The protocol has been produced in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol extension (PRISMA-P). We have co-produced a plain language protocol summary with the PAG which details the different stages of the project, and this is available via our website ( http://clahrc-peninsula.nihr.ac.uk/research/parent-to-parent-support ) for anyone interested in learning more about the detail of the project.

Discussion

All outputs will be available on the NIHR CLAHRC South West Peninsula (PenCLAHRC) website and promoted via PenCLAHRC networks as well as organisations that have been contacted throughout the project. PAG members will be involved in writing and reviewing the academic paper and final report and in co-producing dissemination products such as plain language summaries. The PAG will influence the main conclusions of the systematic review, aid interpretation and help to communicate results in the most appropriate ways. We will hold an impact conference with representatives from neonatal units, national neonatal networks, commissioners of services and parents to discuss what the findings mean for clinical practice and service provision.

Systematic review registration

PROSPERO CRD42018090569.

SUBMITTER: Hunt H

PROVIDER: S-EPMC6211448 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Publications

Parent-to-parent support interventions for parents of babies cared for in a neonatal unit-protocol of a systematic review of qualitative and quantitative evidence.

Hunt Harriet H Whear Rebecca R Boddy Kate K Wakely Leanna L Bethel Alison A Morris Christopher C Abbott Rebecca R Prosser Susan S Collinson Andrew A Kurinczuk Jennifer J Thompson-Coon Jo J

Systematic reviews 20181031 1

<h4>Background</h4>Parents of babies admitted to neonatal units experience an arduous emotional journey. Feelings of helplessness, fear, sadness, guilt, grief and anger are common. These feelings can lead to anxiety, depression and post-traumatic stress which may persist long after discharge from the unit. Support from a parent with first-hand experience able to empathise with problems and challenges may help. This systematic review will identify quantitative and qualitative evidence to address ...[more]

PMID: 30382886

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Project description:ObjectiveInterventions improving parent satisfaction can reduce parent stress, may improve parent-infant bonding and infant outcomes. Our objective was to systematically review neonatal interventions relating to parents of infants of all gestations where an outcome was parent satisfaction.MethodsWe searched the databases MEDLINE, EMBASE, PsychINFO, Cochrane Central Register of Controlled Trials, CINAHL, HMIC, Maternity and Infant Care between 1 January 1946 and 1 October 2017. Inclusion criteria were randomised controlled trials (RCT), cohort studies and other non-randomised studies if participants were parents of infants receiving neonatal care, interventions were implemented in neonatal units (of any care level) and ≥1 quantitative outcome of parent satisfaction was measured. Included studies were limited to the English language only. We extracted study characteristics, interventions, outcomes and parent involvement in intervention design. Included studies were not sufficiently homogenous to enable quantitative synthesis. We assessed quality with the Cochrane Collaboration risk of bias tool (randomised) and the ROBINS-I tool (Risk Of Bias In Non-randomised Studies - of Interventions) (non-randomised studies).ResultsWe identified 32 studies with satisfaction measures from over 2800 parents and grouped interventions into 5 themes. Most studies were non-randomised involving preterm infants. Parent satisfaction was measured by 334 different questions in 29 questionnaires (only 6/29 fully validated). 18/32 studies reported higher parent satisfaction in the intervention group. The intervention theme with most studies reporting higher satisfaction was parent involvement (10/14). Five (5/32) studies reported involving parents in intervention design. All studies had high risk of bias.ConclusionsMany interventions, commonly relating to parent involvement, are reported to improve parent satisfaction. Inconsistency in satisfaction measurements and high risk of bias makes this low-quality evidence. Standardised, validated parent satisfaction measures are needed, as well as higher quality trials of parent experience involving parents in intervention design.Prospero registration numberCRD42017072388.

Project description:BACKGROUND:Extremely premature infants (those born before 28?weeks' gestational age) are highly immature, requiring months of care at a neonatal intensive care unit (NICU). For parents, their child's grave medical condition and prolonged hospitalization are stressful and psychologically disruptive. This study aimed at exploring the needs of psychosocial support of parents of extremely premature infants, and how the NICU as an organization and its staff meets or fails to meet these needs. METHOD:Sixteen open-ended interviews were conducted with 27 parents after their infant's discharge from the NICU. Inductive content analysis was performed. RESULTS:Four themes were identified: Emotional support (with subthemes Empathic treatment by staff, Other parents as a unique source of support, Unclear roles of the various professions); Feeling able to trust the health care provider; Support in balancing time spent with the infant and other responsibilities; Privacy. Parents of extremely premature infants needed various forms of emotional support at the NICU, including support from staff, professional psychological help and/or companionship with other patients' parents. Parents were highly variable in their desire to discuss their emotional state with staff. The respective roles of nursing staff, social workers and psychologists in supporting parents emotionally and identifying particularly vulnerable parents appeared unclear. Parents also needed to be able to maintain a solid sense of trust in the NICU and its staff. Poor communication with and among staff, partly due to staff discontinuity, damaged trust. Parents struggled with perceived pressure from staff to be at the hospital more than they could manage and with the limited privacy of the NICU. CONCLUSIONS:The complex and individual psychosocial needs of parents of extremely preterm infants present many challenges for the NICU and its staff. Increasing staffing and improving nurses' competence in addressing psychosocial aspects of neonatal care would help both nurses and families. Clarifying the roles of different professions in supporting parents and developing their teamwork would lessen the burden on nurses. Communicating with parents about their needs and informing them early in their NICU stay about available support would be essential in helping them cope with their infant's hospitalization.

Project description:Background and objectiveAmong the unique challenges for parents in the transition of infant care from neonatal intensive care unit (NICU) to home are the medical complexity of their babies and the psychological burden of caring for this special patient population. Despite the increased use and accessibility of smartphones, mobile applications (apps) intended for use by families during this transition remain underdeveloped and understudied. Apps to support parents of infants in the NICU represent an accessible potential solution to mitigate existing disparities in follow up. Through this Narrative Review, we intend to describe the characteristics of and development process for apps intended to address the challenges parents with NICU babies may face, and to provide recommendations for further development of apps for this purpose.MethodsWe conducted a review of articles published between November 2012 to November 2022. This search spanned three major databases, PubMed, Embase, and CINAHL, using a controlled vocabulary and keywords for mobile apps and the NICU. These three databases generated 473 articles for review. Utilizing the online primary screening and data extraction tool Covidence, we ultimately included eight articles in this narrative review.Key content and findingsThere are few existing mobile apps intended to ease the transition home for parents of babies in the NICU. There are even fewer apps that have been critically evaluated using acceptable methods and produced with contribution from healthcare practitioners. Among the existing articles on app solutions to benefit education and socioemotional support for parents, many emphasized the importance of including key stakeholders during the app development process and highlighted both qualitative and quantitative measures for assessing relative success of these apps in a clinical setting.ConclusionsAlthough the experiences of parents with infants admitted to the NICU have been well-studied, there remain relatively few existing apps to provide educational and socioemotional support to this population. Future studies should focus on an iterative process of app development whereby both parents and providers are closely involved, in combination with critical appraisal of the app to assess for appropriate support and education of caregivers.

Dataset Information

Parent-to-parent support interventions for parents of babies cared for in a neonatal unit-protocol of a systematic review of qualitative and quantitative evidence.

Background

Methods

Discussion

Systematic review registration

Publications

Parent-to-parent support interventions for parents of babies cared for in a neonatal unit-protocol of a systematic review of qualitative and quantitative evidence.

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