29 research outputs found

    "You are either with me on this or not" : a meta-ethnography of the influence birth partners and care-providers have on coping strategies learned in childbirth education and used by women during labour

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    Background: Childbirth education, which includes providing information and practical techniques to help manage childbirth, aims to support women and their birth partners. It is unknown how birth partners and care providers influence the utilisation of childbirth education information and techniques during women's labour and birth. Aim: To explore the literature that investigates the influence that birth partners and care-providers have on the application of childbirth education information and techniques used by women during childbirth. Methods: A meta-ethnography was performed using a systematic synthesis of reciprocal translation and refutational investigation. There were 22 papers included in the final synthesis. Quality appraisal was undertaken using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBIQARI) quality appraisal tool for qualitative studies. Findings: An over-arching theme of ‘you are either with me on this or not’ emerged from the data, which expressed the positive and negative influences on the use of childbirth education information and techniques during labour and birth. The influence of birth partners was captured in the themes ‘stepping up to their full potential’ and ‘a spare part’. The themes ‘in alignment with the woman’ and ‘managed by another’ were conceptualised from the data in relation to care-providers’ influence. A theme, ‘the right fit’, described organisational and contextual influences. Conclusion: Birth partners and care-providers who are present during a woman's labour have significant potential to influence her use of childbirth education strategies in labour, which provides important insights for translation of evidence into practice

    Women's experiences of changes to childbirth and parenting education in Australia during the COVID-19 pandemic : the birth in the time of COVID-19 (BITTOC) study

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    Objective: As changes to Childbirth and Parenting Education (CBPE) classes during the COVID-19 pandemic remain unexplored in Australia, our objective was to understand how changes to CBPE in Australia during the COVID-19 pandemic impacted on women’s birth and postnatal experiences. Methods: Survey responses were received from 3172 women (1343 pregnant and 1829 postnatal) for the ‘Birth In The Time Of Covid-19 (BITTOC)’ survey (August 2020 to February 2021) in Australia. One of the survey questions asked women if they had experienced changes to CBPE class schedules or format during the pandemic, with a follow up open ended text box inviting women to comment on the impact of these changes. The majority of women experienced changes to CBPE, with only 9 % stating they experienced no changes to classes. A content analysis was undertaken on the 929 open text responses discussing the impact these changes had on women’s experience of pregnancy, birth and postpartum. Results: 929 women (29 %) made 1131 comments regarding changes to CBPE classes during the pandemic. The main finding ‘I felt so unprepared’, highlights how women perceived the cessation or alteration of classes impacted their birth preparation, with many reporting an increased sense of isolation. Some women reported feeling ‘It was good enough’ with adequate provision of online classes, and others feeling ‘I was let down by the system’ due to communication and technological barriers. Conclusions: Results highlight the importance of ensuring continued provision of hybrid/online childbirth education models to enable versatility during times of crisis. Gaps in service provision, communication and resources for childbirth and parenting education need addressing

    How do anxiety and relationship factors influence the application of childbirth education strategies during labor and birth : a Bowen family systems perspective

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    The effectiveness of childbirth education (CBE) has long been debated with studies showing contradictory outcomes for mothers and babies. Understanding how what is learned in CBE is translated into practice during labor and birth is an area that requires investigation as this may be a mediating factor in its effectiveness. Bowen family system theory’s concept of differentiation of self, the ability to be guided by and to act from one’s beliefs and values, is an organizing principle that may affect how relational factors affect the use and application of CBE at the time of birth. The ability to act with emotional maturity when faced with a stressor, such as childbirth, depends on an individual’s capability to separate thoughts from the more reactive feeling process. Recognizing how one’s level of differentiation interacts with the anxious responses of others may assist pregnant women and birth partners to make decisions more objectively about how they want to manage the birthing process. For the health professional, understanding the interplay of relationship variables, physiological stress, anxiety and individual reactivity may allow for the provision of more thoughtful evidence-based practice, which may increase objectivity, and aid communication and decision-making for women during birth. Bowen theory, as a comprehensive systems-based approach to understanding human functioning under stress, offers a novel approach to exploring the application of CBE during birth

    How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.

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    BACKGROUND: Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. RESULTS: Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients'/carers' journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. CONCLUSION: This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK

    Development of models of care coordination for rare conditions: a qualitative study.

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    INTRODUCTION: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions. METHODS: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. RESULTS: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. CONCLUSION: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool

    The AEDUCATE Collaboration. Comprehensive antenatal education birth preparation programmes to reduce the rates of caesarean section in nulliparous women. Protocol for an individual participant data prospective meta-analysis

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    Introduction: Rates of medical interventions in normal labour and birth are increasing. This prospective meta-analysis (PMA) proposes to assess whether the addition of a comprehensive multicomponent birth preparation programme reduces caesarean section (CS) in nulliparous women compared with standard hospital care. Additionally, do participant characteristics, intervention components or hospital characteristics modify the effectiveness of the programme? Methods and analysis: Population: women with singleton vertex pregnancies, no planned caesarean section (CS) or epidural. Intervention: in addition to hospital-based standard care, a comprehensive antenatal education programme that includes multiple components for birth preparation, addressing the three objectives: preparing women and their birth partner/support person for childbirth through education on physiological/hormonal birth (knowledge and understanding); building women’s confidence through psychological preparation (positive mindset) and support their ability to birth without pain relief using evidence-based tools (tools and techniques). The intervention could occur in a hospital-based or community setting. Comparator: standard care alone in hospital-based maternity units. Outcomes: Primary: CS. Secondary: epidural analgesia, mode of birth, perineal trauma, postpartum haemorrhage, newborn resuscitation, psychosocial well-being. Subgroup analysis: parity, model of care, maternal risk status, maternal education, maternal socio-economic status, intervention components. Study design: An individual participant data (IPD) prospective meta-analysis (PMA) of randomised controlled trials, including cluster design. Each trial is conducted independently but share core protocol elements to contribute data to the PMA. Participating trials are deemed eligible for the PMA if their results are not yet known outside their Data Monitoring Committees. Ethics and dissemination: Participants in the individual trials will consent to participation, with respective trials receiving ethical approval by their local Human Research Ethics Committees. Individual datasets remain the property of trialists, and can be published prior to the publication of final PMA results. The overall data for meta-analysis will be held, analysed and published by the collaborative group, led by the Cochrane PMA group. Trial registration number: CRD42020103857

    Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

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    This study found evidence of a lack of co-ordinated care for people affected by rare diseases, which could have negative impacts on the physical and mental health of patients and families

    Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

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    BackgroundPoorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom.MethodsWe undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases.ResultsFindings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three—a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%).ConclusionsCare for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions

    An evidence-based approach to the use of telehealth in long-term health conditions: development of an intervention and evaluation through pragmatic randomised controlled trials in patients with depression or raised cardiovascular risk

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    Background: Health services internationally are exploring the potential of telehealth to support the management of the growing number of people with long-term conditions (LTCs). Aim: To develop, implement and evaluate new care programmes for patients with LTCs, focusing on two common LTCs as exemplars: depression or high cardiovascular disease (CVD) risk. Methods Development: We synthesised quantitative and qualitative evidence on the effectiveness of telehealth for LTCs, conducted a qualitative study based on interviews with patients and staff and undertook a postal survey to explore which patients are interested in different forms of telehealth. Based on these studies we developed a conceptual model [TElehealth in CHronic disease (TECH) model] as a framework for the development and evaluation of the Healthlines Service for patients with LTCs. Implementation: The Healthlines Service consisted of regular telephone calls to participants from health information advisors, supporting them to make behaviour change and to use tailored online resources. Advisors sought to optimise participants’ medication and to improve adherence. Evaluation: The Healthlines Service was evaluated with linked pragmatic randomised controlled trials comparing the Healthlines Service plus usual care with usual care alone, with nested process and economic evaluations. Participants were adults with depression or raised CVD risk recruited from 43 general practices in three areas of England. The primary outcome was response to treatment and the secondary outcomes included anxiety (depression trial), individual risk factors (CVD risk trial), self-management skills, medication adherence, perceptions of support, access to health care and satisfaction with treatment. Trial results Depression trial: In total, 609 participants were randomised and the retention rate was 86%. Response to treatment [Patient Health Questionnaire 9-items (PHQ-9) reduction of ≥ 5 points and score of < 10 after 4 months] was higher in the intervention group (27%, 68/255) than in the control group (19%, 50/270) [odds ratio 1.7, 95% confidence interval (CI) 1.1 to 2.5; p = 0.02]. Anxiety also improved. Intervention participants reported better access to health support, greater satisfaction with treatment and small improvements in self-management, but not improved medication adherence. CVD risk trial: In total, 641 participants were randomised and the retention rate was 91%. Response to treatment (maintenance of/reduction in QRISK®2 score after 12 months) was higher in the intervention group (50%, 148/295) than in the control group (43%, 124/291), which does not exclude a null effect (odds ratio 1.3, 95% CI 1.0 to 1.9; p = 0.08). The intervention was associated with small improvements in blood pressure and weight, but not smoking or cholesterol. Intervention participants were more likely to adhere to medication, reported better access to health support and greater satisfaction with treatment, but few improvements in self-management. The Healthlines Service was likely to be cost-effective for CVD risk, particularly if the benefits are sustained, but not for depression. The intervention was implemented largely as planned, although initial delays and later disruption to delivery because of the closure of NHS Direct may have adversely affected participant engagement. Conclusion: The Healthlines Service, designed using an evidence-based conceptual model, provided modest health benefits and participants valued the better access to care and extra support provided. This service was cost-effective for CVD risk but not depression. These findings of small benefits at extra cost are consistent with previous pragmatic research on the implementation of comprehensive telehealth programmes for LTCs
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