Dataset Information

Parents' Active Role and ENgagement in The review of their Stillbirth/perinatal death 2 (PARENTS 2) study: a mixed-methods study of implementation.

ABSTRACT:

Objective

When a formal review of care takes places after the death of a baby, parents are largely unaware it takes place and are often not meaningfully involved in the review process. Parent engagement in the process is likely to be essential for a successful review and to improve patient safety. This study aimed to evaluate an intervention process of parental engagement in perinatal mortality review (PNMR) and to identify barriers and facilitators to its implementation.

Design

Mixed-methods study of parents' engagement in PNMR.

Setting

Single tertiary maternity unit in the UK.

Participants

Bereaved parents and healthcare professionals (HCPs).

Interventions

Parent engagement in the PNMR (intervention) was based on principles derived through national consensus and qualitative research with parents, HCPs and stakeholders in the UK.

Outcomes

Recruitment rates, bereaved parents and HCPs' perceptions.

Results

Eighty-one per cent of bereaved parents approached (13/16) agreed to participate in the study. Two focus groups with bereaved parents (n=11) and HCP (n=7) were carried out postimplementation to investigate their perceptions of the process.Overarching findings were improved dialogue and continuity of care with parents, and improvements in the PNMR process and patient safety. Bereaved parents agreed that engagement in the PNMR process was invaluable and helped them in their grieving. HCP perceived that parent involvement improved the review process and lessons learnt from the deaths; information to understand the impact of aspects of care on the baby's death were often only found in the parents' recollections.

Conclusions

Parental engagement in the PNMR process is achievable and useful for parents and HCP alike, and critically can improve patient safety and future care for mothers and babies. To learn and prevent perinatal deaths effectively, all hospitals should give parents the option to engage with the review of their baby's death.

SUBMITTER: Burden C

PROVIDER: S-EPMC7970278 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests that parents are unaware that a formal review following the death of their baby takes place. Many would welcome the opportunity to feedback into the meeting itself. Parental involvement in the perinatal mortality review meeting has the potential to improve patient satisfaction, drive improvements in patient safety and promote an open culture within healthcare. Yet evidence on the feasibility of involving bereaved parents in the review process is lacking. This paper describes the protocol for the Parents' Active Role and Engangement iN the review of their Stillbirth/perinatal death study (PARENTS 2) , whereby healthcare professionals' and stakeholders' perceptions of parental involvement will be investigated, and parental involvement in the perinatal mortality review will be piloted and evaluated at two hospitals.We will investigate perceptions of parental involvement in the perinatal mortality review process by conducting four focus groups. A three-round modified Delphi technique will be employed to gain a consensus on principles of parental involvement in the perinatal mortality review process. We will use three sequential rounds, including a national consensus meeting workshop with experts in stillbirth, neonatal death and bereavement care, and a two-stage anonymous online questionnaire. We will pilot a new perinatal mortality review process with parental involvement over a 6-month study period. The impact of the new process will be evaluated by assessing parents' experiences of their care and parents' and staff perceptions of their involvement in the process by conducting further focus groups and using a Parent Generated Index questionnaire.This study has ethical approval from the UK Health Research Authority. We will disseminate the findings through national and international conferences and international peer-reviewed journals.

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Project description:Childhood obesity is a growing global health concern. Although mobile health apps have the potential to deliver behavioural interventions, their impact is commonly limited by a lack of sufficient engagement. The purpose of this study was to explore barriers and facilitators to engagement with a family-focused app and its perceived impact on motivation, self-efficacy, and behaviour. Parents with at least one child under 18 and healthcare professionals working with children were recruited; all participants were allocated to use the NoObesity app over a 6-month period. The mixed-methods design was based on the Non-adoption, Abandonment, Scale-Up, Spread, and Sustainability and Reach, Effectiveness, Adoption, Implementation, and Maintenance frameworks. Qualitative and quantitative data were gathered through semi-structured interviews, questionnaires, and app use data (logins and in-app self-reported data). 35 parents were included in the final analysis; quantitative results were analysed descriptively and thematic analysis was conducted on the qualitative data. Key barriers to engagement were boredom, forgetting, and usability issues and key barriers to potential impact on behaviours were accessibility, lack of motivation, and family characteristics. Novelty, gamification features, reminders, goal setting, progress monitoring and feedback, and suggestions for healthy foods and activities were key facilitators to engagement with the app and behaviours. A key observation was that intervention strategies could help address many motivation and capability barriers, but there was a gap in strategies addressing opportunity barriers. Without incorporating strategies that successfully mitigate barriers in all three determinants of behaviour, an intervention is unlikely to be successful. We highlight key recommendations for developers to consider when designing the features and implementation of digital health interventions. Trial Registration: ClinicalTrials.gov (NCT05261555).

Project description:OBJECTIVE:The PARENTS 1 study (Parents' Active Role and ENgagement in The review of their Stillbirth/perinatal death) found that parents would endorse the opportunity to give feedback into the perinatal mortality review (PNMR) process. In subsequent focus groups, healthcare professionals were positive about parental engagement, although they considered that there may be significant challenges. The objective of this study was to develop core principles and recommendations for parental engagement in PNMR in the UK. METHODS:A two-round Delphi technique was followed to reach consensus on core principles for parental engagement in the PNMR process; Round 1 included a national consensus workshop and Round 2 an online questionnaire. The consensus meeting was attended by a national panel of stakeholders (clinical and academic experts, parent advocates, managers and commissioners) in stillbirth and neonatal and bereavement care. To develop recommendations for parental engagement, participants discussed four key areas comprising: communication with parents, including receiving feedback; the format of the PNMR meeting; the parental engagement pathway; and challenging aspects of engaging with parents in reviews. Content analysis was conducted to generate recommendations from the meeting for a subsequent anonymous web-based survey. Attendees of the consensus workshop and members of the PARENTS 2 Project Advisory Board were asked to rank recommendations using a 9-point Likert scale from 1 (not important) to 9 (critically important). It had been agreed a priori, in compliance with established Grading of Recommendations, Assessment, Development and Evaluation (GRADE) criteria, that 'consensus' would be achieved if over 70% of participants scored the principle as 'critical' (score of 7-9) and fewer than 15% scored the principle as 'not important' (score of 1-3). Principles for which consensus was achieved were included in the core recommendations. RESULTS:Of the 29 invited stakeholders, 22 participated in the consensus meeting and 25 (86% response rate) in the subsequent online questionnaire in June 2017. Consensus was agreed on 12 core principles. Of the 25 participants, 96% agreed that a face-to-face explanation of the PNMR process was of critical importance, 72% considered that parents should be offered the opportunity to nominate a suitable advocate, 92% believed that responses to parents' comments should be formally documented, 96% indicated that it was vital for action plans to be translated into lessons learnt and that this process should be monitored, and 100% of stakeholders voted that a plain-English summary should be produced for the parents following the meeting. There was good agreement on a further seven principles. CONCLUSIONS:Key national stakeholders were unanimously supportive of parental engagement in the PNMR process and agreed on core principles to make this process feasible, meaningful and robust. A 6-month pilot of parental engagement in the PNMR process (PARENTS 2 study) in two UK units took place after the consensus on core principles. In collaboration with the National Perinatal Epidemiology Unit, the findings will inform the national standardized PNMR tool. © 2018 The Authors. Ultrasound in Obstetrics & Gynecology published by John Wiley & Sons Ltd on behalf of the International Society of Ultrasound in Obstetrics and Gynecology.

Project description:BackgroundPerinatal mental health symptoms commonly remain underdiagnosed and undertreated in maternity care settings in the United Kingdom, with outbreaks of disease, like the COVID-19 pandemic, further disrupting access to adequate mental health support. Digital technologies may offer an innovative way to support the mental health needs of women and their families throughout the perinatal period, as well as assist midwives in the recognition of perinatal mental health concerns. However, little is known about the acceptability and perceived benefits and barriers to using such technologies.ObjectiveThe aim of this study was to conduct a mixed methods evaluation of the current state of perinatal mental health care provision in the United Kingdom, as well as users' (women and partners) and midwives' interest in using a digital mental health assessment throughout the perinatal period.MethodsWomen, partners, and midwives were recruited to participate in the study, which entailed completing an online survey. Quantitative data were explored using descriptive statistics. Open-ended response data were first investigated using thematic analysis. Resultant themes were then mapped onto the components of the Capability, Opportunity, and Motivation Behavior model and summarized using descriptive statistics.ResultsA total of 829 women, 103 partners, and 90 midwives participated in the study. The provision of adequate perinatal mental health care support was limited, with experiences varying significantly across respondents. There was a strong interest in using a digital mental health assessment to screen, diagnose, and triage perinatal mental health concerns, particularly among women and midwives. The majority of respondents (n=781, 76.42%) expressed that they would feel comfortable or very comfortable using or recommending a digital mental health assessment. The majority of women and partners showed a preference for in-person consultations (n=417, 44.74%), followed by a blended care approach (ie, both in-person and online consultations) (n=362, 38.84%), with fewer participants preferring online-only consultations (n=120, 12.88%). Identified benefits and barriers mainly related to physical opportunity (eg, accessibility), psychological capability (eg, cognitive skills), and automatic motivation (eg, emotions).ConclusionsThis study provides proof-of-concept support for the development and implementation of a digital mental health assessment to inform clinical decision making in the assessment of perinatal mental health concerns in the United Kingdom.

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