'An extra level of kind of torment': Views and experiences of recurrent miscarriage care during the initial phases of COVID-19 in Ireland-A qualitative interview study.

INTRODUCTION: Maternity services underwent much change during the COVID-19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID-19 pandemic on those experiences and perceptions of care. METHODS: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first-trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi-structured interviews, virtually all due to COVID-19 restrictions, between June 2020 and February 2021. These were audio-recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. RESULTS: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first-'Disconnected'-describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in-person care was highlighted. CONCLUSION: Our analysis provides rich insights into the significant impacts that the COVID-19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. PATIENT OR PUBLIC CONTRIBUTION: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co-authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes.

Factors that shape recurrent miscarriage care experiences: findings from a national survey.

BACKGROUND: Learning what matters to women/couples with recurrent miscarriage (RM) is essential to inform service improvement efforts and future RM care practices. Previous national and international surveys have examined inpatient stays, maternity care, and care experiences around pregnancy loss, but there is little focus on RM care. We aimed to explore the experiences of women and men who have received RM care and identify patient-centred care items linked to overall RM care experience. METHODS: Between September and November 2021, we invited people who had experienced two or more consecutive first trimester miscarriages and received care for RM in Ireland in the ten-year period prior to participate in a cross-sectional web-based national survey. The survey was purposefully designed and administered via Qualtrics. It included questions on sociodemographics, pregnancy and pregnancy loss history, investigation and treatment for RM, overall RM care experience, and patient-centred care items at various stages of the RM care pathway such as respect for patients' preferences, information and support, the environment, and involvement of partners/family. We analysed data using Stata. RESULTS: We included 139 participants (97% women, n = 135) in our analysis. Of the 135 women, 79% were aged 35-44 years (n = 106), 24% rated their overall RM care experience as poor (n = 32), 36% said the care they received was much worse than expected (n = 48), and 60% stated health care professionals in different places did not work well together (n = 81). Women were more likely to rate a good care experience if they had a healthcare professional to talk to about their worries/fears for RM investigations (RRR 6.11 [95% CI: 1.41-26.41]), received a treatment plan (n = 70) (RRR 3.71 [95% CI: 1.28-10.71]), and received answers they could understand in a subsequent pregnancy (n = 97) (RRR 8 [95% CI: 0.95-67.13]). CONCLUSIONS: While overall experience of RM care was poor, we identified areas that could potentially improve people's RM care experiences - which have international relevance - such as information provision, supportive care, communication between healthcare professionals and people with RM, and care coordination between healthcare professionals across care settings.

Fatal fetal anomaly: Experiences of women and their partners.

OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland. METHODS: A qualitative study using in-depth semi-structured interviews and interpretative phenomenological analysis was undertaken. Purposeful sampling was used to recruit 10 parents, six women and four of their male partners. Parents recruited included those who terminated and continued the pregnancy. RESULTS: Three superordinate themes were identified: 'Attachment and coping', 'There's no place for you in the pregnancy world' and 'Consistency of quality care'. Parents shared the different approaches and level of attachment to their baby that supported their coping. Regardless of the level of attachment, many parents benefited from the acts of remembrance. Parents expressed how they no longer felt they belonged in the 'pregnancy world' and described a need for healthcare professionals to recognise their loss and create a safe and supportive environment in which they could share their grief. Despite this, parents' accounts highlighted variations and inconsistencies in care and service provision. CONCLUSION: Our study highlighted parents' need for consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs.

How we define recurrent miscarriage matters: A qualitative exploration of the views of people with professional or lived experience.

BACKGROUND: Recurrent miscarriage (RM) affects 1%-3% of women/couples of reproductive age depending on the definition used, for example, whether 2 or ≥3 miscarriages. Stakeholders' views of how RM is defined have received limited attention to date. A definition reflects the medical evidence and values of a society at the time, and thus warrants ongoing review. AIM: We aimed to explore the views of women and men with lived experience of RM, and those involved in the delivery/management of services and supports, on how RM is and/or should be defined. METHODS: We adopted a qualitative study design, incorporating semi-structured interviews. We used purposive sampling to recruit participants in the Republic of Ireland, ensuring diverse perspectives were included. Women and men with lived experience of ≥2 consecutive first-trimester miscarriages were recruited via health professionals and social media; other participants via the research team's networks. Interviews were audio-recorded, transcribed, pseudo-anonymized and analysed using reflexive thematic analysis. FINDINGS: We conducted interviews with 42 health professionals/service providers and 13 women and 7 men with lived experience of RM (June 2020 to February 2021). We generated three interrelated themes from the data: (i) The need for a standardized definition of recurrent miscarriage-Finding a balance between research evidence, individual needs and healthcare resources, (ii) The definition is a route to finding an answer and/or validating women/couples' experience of loss and (iii) Working around the definition-Advocacy and impacts. CONCLUSION: A nuanced approach to defining RM is warranted, one which is evidence-informed recognizes the individual needs of women/couples, and considers healthcare resources. PATIENT OR PUBLIC CONTRIBUTION: Members of the multidisciplinary RE:CURRENT (REcurrent miscarriage: evaluating CURRENT services) Project Research Advisory Group (including four parent advocates, two of whom are co-authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes.

Enhancing referral processes within an integrated fall prevention pathway for older people: a mixed-methods study.

OBJECTIVES: Multifactorial interventions, which involve assessing an individual's risk of falling and providing treatment or onward referral, require coordination across settings. Using a mixed-methods design, we aimed to develop a process map to examine onward referral pathways following falls risk assessment in primary care. SETTING: Primary care fall risk assessment clinics in the South of Ireland. PARTICIPANTS: Focus groups using participatory mapping techniques with primary care staff (public health nurses (PHNs), physiotherapists (PT),and occupational therapists (OT)) were conducted to plot the processes and onward referral pathways at each clinic (n=5). METHODS: Focus groups were analysed in NVivo V.12 using inductive thematic analysis. Routine administrative data from January to March 2018 included details of client referrals, assessments and demographics sourced from referral and assessment forms. Data were analysed in Stata V.12 to estimate the number, origin and focus of onward referrals and whether older adults received follow-up interventions. Quantitative and qualitative data were analysed separately and integrated to produce a map of the service. RESULTS: Nine staff participated in three focus groups and one interview (PHN n=2; OT n=4; PT n=3). 85 assessments were completed at five clinics (female n=69, 81.2%, average age 77). The average number of risk factors was 5.4 out of a maximum of 10. Following assessment, clients received an average of three onward referrals. Only one-third of referrals (n=135/201, 33%) had data available on intervention receipt. Primary care staff identified variations in how formally onward referrals were managed and barriers, including a lack of client information, inappropriate referral and a lack of data management support. CONCLUSION: Challenges to onward referral manifest early in an integrated care pathway, such as clients with multiple risk factors sent for initial assessment and the lack of an integrated IT system to share information across settings.

Developing guideline-based key performance indicators for recurrent miscarriage care: lessons from a multi-stage consensus process with a diverse stakeholder group.

BACKGROUND: Standardised care pathways tailored to women/couples who experience recurrent miscarriage are needed; however, clinical practice is inconsistent and poorly organised. In this paper, we outline our processes and experiences of developing guideline-based key performance indicators (KPIs) for recurrent miscarriage care with a diverse stakeholder group which will be used to evaluate national services. To date, such exercises have generally only involved clinicians, with the need for greater stakeholder involvement highlighted. METHODS: Our study involved six stages: (i) identification and synthesis of recommendations for recurrent miscarriage care through a systematic review of clinical practice guidelines; (ii) a two-round modified e-Delphi survey with stakeholders to develop consensus on recommendations and outcomes; (iii) four virtual meetings to develop this consensus further; (iv) development of a list of candidate KPIs; (v) survey to achieve consensus on the final suite of KPIs and a (vi) virtual meeting to agree on the final set of KPIs. Through participatory methods, participants provided feedback on the process of KPI development. RESULTS: From an initial list of 373 recommendations and 14 outcomes, 110 indicators were prioritised for inclusion in the final suite of KPIs: (i) structure of care (n = 20); (ii) counselling and supportive care (n = 7); (iii) investigations (n = 30); treatment (n = 34); outcomes (n = 19). Participants' feedback on the process comprised three main themes: accessibility, richness in diversity, streamlining the development process. CONCLUSIONS: It is important and feasible to develop guideline-based KPIs with a diverse stakeholder group. One hundred and ten KPIs were prioritised for inclusion in a suite of guideline-based KPIs for recurrent miscarriage care. Insights into our experiences may help others undertaking similar projects, particularly those undertaken in the absence of a clinical guideline and/or involving a range of stakeholders.

Women/couples who have recurrent/repeated miscarriages should receive care that meets their needs, through agreed care pathways. This is often not the case. Key performance indicators (KPIs) are measures of specific elements of care (structures, processes and/or outcomes), which can help us to judge the quality of care given. In this paper, we describe how we worked with women and men with lived experience, doctors, nurses, managers, and others, to develop and agree on a list KPIs for recurrent miscarriage care in Ireland. We will use these to check what services are doing across the country and what could be done better. Participants filled out surveys and took part in meetings to vote on and agree on what KPIs were important to include. They also shared their views and experiences of taking part in this work. Together, we developed 110 KPIs for recurrent miscarriage care. These include measures of how care is structured, counselling and supports, investigations and treatments provided, and health-related outcomes. Participants' valued the different views that people brought to discussions and what they learned. They suggested ways that the process could be made more participant-friendly. For example, being up-front about the time it would take, explaining medical terms more, and cutting down on the number of items to be rated in surveys. It is important and possible to develop KPIs with different groups, particularly those with lived experience. Learning from our study may help others who want to do similar projects, such as develop KPIs or guidelines for care.

Outsourcing Transcription: Extending Ethical Considerations in Qualitative Research.

Research ethics considerations foreground minimising harm to participants. Whilst increasing attention is being paid to researcher vulnerabilities, little has been written about transcriptionists, who can potentially experience emotional distress and vicarious trauma. In this article, we highlight ethical considerations when outsourcing audio for transcription as part of the RE:CURRENT (REcurrent miscarriage: evaluating CURRENT services) Project. Through qualitative interviews, we explored the perspectives of those involved in the management/delivery of services, and women and men who experienced recurrent miscarriage (N = 62). We put distress protocols in place for participants, researchers and the transcriptionist, and adopted a research team approach with the professional transcriber. The transcriptionist highlighted the isolated nature of the role; how researchers often did not brief her when commissioning work, and how the personal impacts of this work were rarely considered. Researchers and ethics committees should consider ethical responsibilities to 'do no harm' when it comes to transcriptionist wellbeing.

Clinical practice guidelines for recurrent miscarriage in high-income countries: a systematic review.

Recurrent miscarriage affects 1-2% of women of reproductive age, depending on the definition used. A systematic review was conducted to identify, appraise and describe clinical practice guidelines (CPG) published since 2000 for the investigation, management, and/or follow-up of recurrent miscarriage within high-income countries. Six major databases, eight guideline repositories and the websites of 11 professional organizations were searched to identify potentially eligible studies. The quality of eligible CPG was assessed using the Appraisal of Guidelines for Research and Evaluation (AGREE II) Tool. A narrative synthesis was conducted to describe, compare and contrast the CPG and recommendations therein. Thirty-two CPG were included, from which 373 recommendations concerning first-trimester recurrent miscarriage were identified across four sub-categories: structure of care (42 recommendations, nine CPG), investigations (134 recommendations, 23 CPG), treatment (153 recommendations, 24 CPG), and counselling and supportive care (46 recommendations, nine CPG). Most CPG scored 'poor' on applicability (84%) and editorial independence (69%); and to a lesser extent stakeholder involvement (38%) and rigour of development (31%). Varying levels of consensus were found across CPG, with some conflicting recommendations. Greater efforts are required to improve the quality of evidence underpinning CPG, the rigour of their development and the inclusion of multi-disciplinary perspectives, including those with lived experience of recurrent miscarriage.

A protocol for a systematic review of clinical practice guidelines for recurrent miscarriage.

Recurrent miscarriage (RM) was recently re-defined by the European Society of Human Reproduction and Embryology (ESHRE) as the loss of two or more consecutive pregnancies. Before this, and indeed still in some countries, RM was defined as three or more consecutive pregnancy losses. While the incidence of RM depends on the definition employed and population studied, it is generally accepted to affect 1-6% of women of reproductive age. Clinical practice guidelines (CPGs) for RM have been published by some professional organisations. While there are CPGs on miscarriage in Ireland, there are none concerning RM specifically. The aim of this systematic review is to identify, appraise and describe published CPGs for the management, investigation and/or follow-up of RM within high-income countries. Electronic databases (MEDLINE (Ovid ®; 1946), Embase ® (Elsevier; 1980), CINAHL Complete (EBSCOhost; 1994), Web of Science™ (Thomson Reuters), Scopus (Elsevier; 2004), and Open Grey (INIST-CNRS; 2011)), selected guideline repositories, and the websites of professional societies will be searched to identify CPGs, published within the last 20 years, for potential inclusion. Two reviewers will review abstracts and full texts independently against the eligibility criteria. Characteristics and recommendations of included CPGs will be extracted by one reviewer and double-checked by another. Two reviewers will use the Appraisal of Guidelines for Research and Evaluation version 2 (AGREE II) instrument independently to assess the quality of the included CPGs. Narrative synthesis will be conducted to appraise and compare CPGs and their recommendations or guidance therein. The identification, appraisal and description of published CPGs in other high-income countries will be a valuable first step in informing efforts to promote the optimisation and standardisation of RM care.

Involving young people in cyberbullying research: The implementation and evaluation of a rights-based approach.

BACKGROUND: Cyberbullying is an international Public Health concern. Efforts to understand and address it can be enhanced by involving young people. This paper describes a rights-based collaboration with young people in a qualitative exploration of cyberbullying. It describes the establishment, implementation and evaluation of a Young Person's Advisory Group as well as identifying the impact on the research process and the young people involved. METHODS: Sixteen postprimary school students met with researchers on five occasions in a youth centre. Sessions focused on building the young people's capacity to engage with the research, designing the qualitative study, interpreting study findings and evaluating the collaboration process. RESULTS: The Advisory Group highlighted a lack of understanding and appropriate action with regard to cyberbullying but believed that their involvement would ultimately help adults to understand their perspective. Evaluation findings indicate that members were supported to form as well as express their views on the design, conduct and interpretation of the research and that these views were acted upon by adult researchers. Their involvement helped to ensure that the research was relevant and reflective of the experiences, interests, values and norms of young people. CONCLUSION: Young people can contribute a unique perspective to the research process that is otherwise not accessible to adult researchers. The approach described in this study is a feasible and effective way of operationalizing young people's involvement in health research and could be adapted to explore other topics of relevance to young people.

Development of performance indicators for systems of urgent and emergency care in the Republic of Ireland: Systematic review and consensus development exercise.

Objectives: To develop a set of performance indicators to monitor the performance of emergency and urgent care systems in the Republic of Ireland. Design: This study comprised of an update of a previously performed systematic review and a formal consensus development exercise. Results: Initial literature searches yielded 2339 article titles.  After further searches, sixty items were identified for full-text review. Following this review, fifty-seven were excluded. Three articles were identified for inclusion in the systematic review. These papers produced 42 unique indicators for consideration during the consensus development exercise. In total, 17 indicators had a median of greater than 7 following the meeting and met our pre-specified criterion for acceptable consensus. Discussion: Using this systematic review and nominal group consensus development exercise, we have identified a set of 17 indicators, which a consensus of different experts regard as potentially good measures of the performance of urgent and emergency care systems in Ireland.

Influences on Decision-Making Regarding Antipsychotic Prescribing in Nursing Home Residents With Dementia: A Systematic Review and Synthesis of Qualitative Evidence.

BACKGROUND: Antipsychotic prescribing is prevalent in nursing homes for the management of behavioral and psychological symptoms of dementia (BPSD), despite the known risks and limited effectiveness. Many studies have attempted to understand this continuing phenomenon, using qualitative research methods, and have generated varied and sometimes conflicting findings. To date, the totality of this qualitative evidence has not been systematically collated and synthesized. AIMS: To synthesize the findings from individual qualitative studies on decision-making and prescribing behaviors for antipsychotics in nursing home residents with dementia, with a view to informing intervention development and quality improvement in this field. METHODS: A systematic review and synthesis of qualitative evidence was conducted (PROSPERO protocol registration CRD42015029141). Six electronic databases were searched systematically from inception through July 2016 and supplemented by citation, reference, and gray literature searching. Studies were included if they used qualitative methods for both data collection and analysis, and explored antipsychotic prescribing in nursing homes for the purpose of managing BPSD. The Critical Appraisal Skills Program assessment tool was used for quality appraisal. A meta-ethnography was conducted to synthesize included studies. The Confidence in the Evidence from Reviews of Qualitative research approach was used to assess the confidence in individual review findings. All stages were conducted by at least 2 independent reviewers. RESULTS: Of 1534 unique records identified, 18 met the inclusion criteria. Five key concepts emerged as influencing decision-making: organizational capacity; individual professional capability; communication and collaboration; attitudes; regulations and guidelines. A "line of argument" was synthesized and a conceptual model constructed, comparing this decision-making process to a dysfunctional negative feedback loop. Our synthesis indicates that when all stakeholders come together to communicate and collaborate as equal and empowered partners, this can result in a successful reduction in inappropriate antipsychotic prescribing. CONCLUSIONS: Antipsychotic prescribing in nursing home residents with dementia occurs in a complex environment involving the interplay of various stakeholders, the nursing home organization, and external influences. To improve the quality of antipsychotic prescribing in this cohort, a more holistic approach to BPSD management is required. Although we have found the issue of antipsychotic prescribing has been extensively explored using qualitative methods, there remains a need for research focusing on how best to change the prescribing behaviors identified.