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Improving older people’s experiences and safety at transitions of care: the PACT mixed-methods study including RCT
Background Transitions from hospital to home are a risky time for older people (aged 75 years and older). Unplanned and often avoidable hospital re-admissions are therefore high in this group. This research aimed to understand if increased involvement of older people in their care in hospital would improve the safety and experience of care transitions. Objectives In six work packages we set out to: understand patient and carer involvement in and experience of care transitions explore staff experiences of delivering good transitional care develop and validate a new measure (the Partners at Care Transitions Measure) to assess patient experience and safety during care transitions create a theory and logic model to inform the co-designed transitions intervention followed by a formative evaluation test the feasibility of delivering a trial to evaluate the intervention evaluate the clinical- and cost-effectiveness of the transitions intervention with a parallel process evaluation. Design Qualitative methods (1 and 2), literature reviewing, Delphi techniques and validation testing (3), co-design (4), cluster feasibility trial (5) and cluster randomised controlled trial (6). Settings National Health Service acute hospital trusts, general practices, patients and carer homes across the north of England, United Kingdom. Participants Patients aged 75 years and older and their caregivers. National Health Service staff working in acute National Health Service trusts on wards delivering the intervention. Intervention ‘Your Care Needs You’ intervention to support patient and carer involvement in hospital care in preparation for returning home. This comprised fixed components: a booklet, an advice sheet for managing at home and a film; and flexible components: ongoing staff involvement of patients through multiple approaches. Implementation included a nominated lead, staff training and posters. Main outcome measures Primary outcome was unplanned 30-day hospital re-admissions. Secondary outcomes included: unplanned 60- and 90-day hospital re-admissions; quality of transition; health-related quality of life (EuroQol-5 Dimensions, five-level version); and self-reported healthcare resource use. Data sources National Health Service Secondary Use Services data and Hospital Episodes data for work package 2 and routinely recorded National Health Service acute trust hospital data on re-admissions for work packages 5 and 6. Review methods Systematic narrative review for preparatory work on patient involvement; narrative meta review of transitions interventions; scoping review of transitions measures. Results Work package 1: Six themes relating to patient experience of care transitions. Patient involvement in hospital care found to be challenging ‘work’ that was often invisible to staff. Work package 2: National Health Service staff reported that high-quality care transitions were facilitated primarily through trust and strong relationships. Work package 3: A measure of quality and safety of care transitions (Partners at Care Transitions Measure) developed and validated with good internal reliability and internal consistency. Work package 4: An intervention called ‘Your Care Needs You’ that required revisions to support implementation. Work package 5: Primary outcome data were collected for 90% of participants. Follow-up questionnaire response rates were lower than anticipated (75% vs. 85%). Information on the acceptability, usability and implementation of the intervention informed iterations to the intervention and implementation package. Work package 6: 4947 participants from 39 hospital wards took part in the main trial. Six hundred and thirteen participants from 35 wards took part in the nested cohort. No differences were observed in the primary outcome of unplanned re-admission (Y/N) at 30 days post discharge [17% experienced re-admission within 30 days in the ‘Your Care Needs You’ group, 18% in care-as-usual, odds ratio: (0.93; 95% confidence interval, 0.78 to 1.10; p = 0.372)], and also at 60 and 90 days post discharge but all results were in favour of the intervention with a reduction in total re-admissions of 13% over 90 days [incidence rate ratio: 0.87 (0.76 to 0.99), p = 0.039]. There was a statistically significant reduction in Partners at Care Transitions Measure safety concerns at 30 days post discharge. The intervention is likely to be cost-effective. Limitations The main trial was conducted during the COVID-19 pandemic which exacerbated staffing challenges and limited opportunities to enhance and support implementation of the intervention. Participant recruitment to the nested study was challenging, resulting in fewer patients than planned and a less diverse sample than that included in the primary cohort. Therefore, while our primary cohort is representative of the patients in the hospital during the trial period, the nested cohort may suffer from some bias. Conclusions The ‘Your Care Needs You’ intervention offers a way to support staff and patients/families to facilitate greater involvement in care. This research demonstrates that increased involvement in hospital care has the potential to improve safety at transitions. Finding ways to support staff to encourage better patient involvement could lead to even more benefits being realised. Future work Hospitals could consider involving volunteers in supporting greater patient and family involvement. There was some indication that the component of the intervention most favoured was the patient advice for discharge. Trial registration This trial is registered as Current Controlled Trials ISRCTN51154948 (WP5) and ISRCTN17062524 (WP6). Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-1214-20017) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 4. See the NIHR Funding and Awards website for further award information.
Dynamic modulation of confidence based on the metacognitive skills of collaborators.
In collaborative decision-making contexts, people typically share their metacognitive experience of confidence to convey the degree of certainty in their decisions. To reach collective decisions, collaborators' individual beliefs can be aggregated and weighted according to their respective confidence, thereby enhancing group accuracy beyond individual capabilities. Previous joint decision-making studies have shown that individuals tend to adopt the same scale for communicating their levels of confidence. However, confidence judgments vary not only in terms of metacognitive bias, that is whether individuals tend to report generally low or high confidence, but also in terms of metacognitive accuracy, or how well the confidence judgments align with choice accuracy. In the first two experiments, where the metacognitive accuracy of the collaborator was manipulated and explicitly communicated to participants, individuals increased their average confidence levels as the metacognitive accuracy of the collaborator decreased, while their own metacognitive accuracy remained unaffected. Trial-wise analyses showed that participants differentially adapted their confidence after a collaborator made a wrong group decision, depending on the metacognitive accuracy of the collaborator. In two follow up studies, we showed that both manipulations (i.e. manipulating objective differences in the metacognitive accuracies of the collaborators and explicitly communicating these differences) were necessary for these effects to emerge. Our findings shed light on how collaborative decision-making contexts can dynamically affect metacognitive processes.
On Religious Influence in Bioethics: The Limits of Pluriversalism.
The World Congress of Bioethics held in Qatar in 2024 (WCB 2024) sparked controversy around the role of religion in bioethics, highlighting the need for critical discussions. During the congress, there was a strong push for incorporating religious values into bioethical discourse, raising questions about the validity and implications of such an approach. This paper examines the influence of religious thought on bioethical discussions, and the ongoing debate over the role of religious perspectives in this field. Here, we explore Jecker and colleagues' pluriversal framework, which was proposed at WCB 2024, espousing a bioethical discourse grounded in civility, respect for law, justice, non-domination, and toleration. While the framework aims to embrace the world's cultural and religious diversity, here, we suggest that it struggles with significant ethical inconsistencies, poses challenges for pluralistic dialogue, and may be hard to reconcile with human rights. Through an analysis of Jecker's principles and their application, we discuss the difficulty of integrating conflicting religious views with ethical values and with widely accepted human rights frameworks. We then proceed to examine how and why religions might exert undue influence on bioethics, and we argue for a different future for bioethics.
Practical routes to preregistration: a guide to enhanced transparency and rigour in neuropsychological research
Abstract Preregistration is the act of formally documenting a research plan before collecting (or at least before analysing) the data. It allows those reading a final research report to know which aspects of a study were decided before sight of the data, and which were added later. This enables informed evaluation of the severity with which scientific claims have been tested. We, as the British Neuropsychological Society Open Research Group, conducted a survey to explore awareness and adoption of open research practices within our field. Neuropsychology involves the study of relatively rare or hard-to-access participants, creating practical challenges that, according to our survey, are perceived as barriers to preregistration. We survey the available routes to preregistration, and suggest that the barriers are all surmountable in one way or another. However, there is a tension, in that higher levels of bias control require greater restriction over the flexibility of preregistered studies, but such flexibility is often essential for neuropsychological research. Researchers must therefore consider which route provides the right balance of rigour and pragmatic flexibility to render a preregistered project viable for them. By mapping out the issues and potential solutions, and by signposting relevant resources and publication routes, we hope to facilitate well-reasoned decision-making and empower neuropsychologists to enhance the transparency and rigour of their research. Although we focus neuropsychology, our guidance is applicable to any field that studies hard-to-access human samples, or involves arduous or expensive means of data collection.
The role of virtual wards in maternity in the United Kingdom.
Virtual wards are an initiative which aims to provide hospital care from the comfort of the patient's own home. Monitoring and additional services, such as intravenous drugs and fluids and blood tests can be undertaken through this system. Although virtual wards have been used in the UK since 2005 in specialties such as General Medicine, General Surgery and Paediatrics, their use in maternity has been more limited. This article aims to review their current use in the UK and beyond as well as to discuss some of the advantages and challenges they may pose to a maternity population.
Anxiety and Related Disorders During the Perinatal Period.
Anxiety and anxiety-related disorders are, as a group, the most common mental health conditions and are more common among women compared with among men. It is now evident that these disorders affect one in five pregnant and postpartum people and are more common than depression. For some disorders (e.g., obsessive-compulsive disorder), there is also evidence of an elevated risk for their development and exacerbation during perinatal periods. In this article, we review the literature pertaining to anxiety and anxiety-related disorders during the perinatal period. We also provide information related to pregnancy-specific anxiety and fear of childbirth constructs that exist outside of diagnostic classification but are particularly important in the perinatal context. We review the scope, prevalence, and etiology of these disorders as well as comorbidity, screening, assessment, and treatment. We conclude with an overview of some of the key gaps in knowledge and recommendations for future research.
Women's experiences of attempted suicide in the perinatal period (ASPEN-study) - a qualitative study.
BACKGROUND: Suicide is a leading cause of maternal death during pregnancy and the year after birth (the perinatal period). While maternal suicide is a relatively rare event with a prevalence of 3.84 per 100,000 live births in the UK [1], the impact of maternal suicide is profound and long-lasting. Many more women will attempt suicide during the perinatal period, with a worldwide estimated prevalence of 680 per 100,000 in pregnancy and 210 per 100,000 in the year after birth [2]. Qualitative research into perinatal suicide attempts is crucial to understand the experiences, motives and the circumstances surrounding these events, but this has largely been unexplored. AIM: Our study aimed to explore the experiences of women and birthing people who had a perinatal suicide attempt and to understand the context and contributing factors surrounding their perinatal suicide attempt. METHODS: Through iterative feedback from a group of women with lived experience of perinatal mental illness and relevant stakeholders, a qualitative study design was developed. We recruited women and birthing people (N = 11) in the UK who self-reported as having undertaken a suicide attempt. Interviews were conducted virtually, recorded and transcribed. Using NVivo software, a critical realist approach to Thematic Analysis was followed, and themes were developed. RESULTS: Three key themes were identified that contributed to the perinatal suicide attempt. The first theme 'Trauma and Adversities' captures the traumatic events and life adversities with which participants started their pregnancy journeys. The second theme, 'Disillusionment with Motherhood' brings together a range of sub-themes highlighting various challenges related to pregnancy, birth and motherhood resulting in a decline in women's mental health. The third theme, 'Entrapment and Despair', presents a range of factors that leads to a significant deterioration of women's mental health, marked by feelings of failure, hopelessness and losing control. CONCLUSIONS: Feelings of entrapment and despair in women who are struggling with motherhood, alongside a background of traumatic events and life adversities may indicate warning signs of a perinatal suicide. Meaningful enquiry around these factors could lead to timely detection, thus improving care and potentially prevent future maternal suicides.
Preterm premature rupture of the membranes (PPROM): a study of patient experiences and support needs.
BACKGROUND: Preterm prelabour rupture of membranes (PPROM) is a common obstetric condition but outcomes can vary depending on gestation. Significant maternal and foetal complications occur including preterm birth, infection, abruption, cord prolapse, pulmonary hypoplasia and even death. Although the need for psychological support is recognised it is unclear how much is actually offered to women and their families. This study aimed to survey the views of women and their families who have undergone PPROM in order to understand the care and psychological burden these families face. METHODS: An online survey was conducted, recruiting women via social media with collaboration from the patient advocacy support group Little Heartbeats. Responses were collated where fields were binary or mean and standard deviations calculated. Framework analysis was used to identify and analyse themes in free text responses. RESULTS: 180PPROM pregnancies were described from 177 respondents. Although carewas variable and respondents were from across the world there werecommon themes. Five themes were highlighted which were: a lack ofbalanced information regarding the condition, support in decisionmaking and support with the process, specific psychological supportand ongoing psychological consequences of PPROM. CONCLUSION: This survey highlights areas in which care needs to be improved for women with PPROM. Previous studies have shown that providing good care during the antenatal period reduces long-term psychological morbidity for the whole family. The need for support, with regard both to information provided to women and their families and their psychological support needs to be addressed urgently.
Exposure-based cognitive-behaviour therapy for anxiety-related disorders in pregnancy (ADEPT): Results of a feasibility randomised controlled trial of time-intensive versus weekly CBT.
BACKGROUND: Exposure-based cognitive-behaviour therapies (CBT) are effective but their acceptability in pregnancy is untested. Time-intensive delivery of CBT (INT-CBT) may accelerate treatment response. This feasibility trial aimed to explore this. METHODS: This multi-centre parallel-group trial recruited pregnant women with anxiety-related disorders via maternity and mental health settings and randomised (1:1) to INT-CBT (8-10 treatment hours over two weeks) or standard weekly one-hour CBT sessions (WCBT). Both groups also received late pregnancy and postpartum follow-ups. Participants received 10-12 total hours of individual therapy using remote delivery (95 %). Outcomes were assessed: at baseline; after two weeks of treatment, late pregnancy, at 1 and 3 months postpartum (by blinded assessors), alongside a qualitative interview. Pre-specified primary feasibility outcomes regarding acceptability, recruitment and retention were evaluated. The secondary outcome of adjusted mean difference was estimated for the proposed primary outcome. RESULTS: All feasibility outcomes were met. Of 135 screened, 59 women were randomised into the trial (29 INT-CBT:30 WCBT). 93 % completed treatment and 81 % provided data at 3 m postpartum. No adverse effects were attributable to treatment. Women receiving INT-CBT showed a reduction in anxiety (GAD-7) after two weeks of treatment compared to WCBT (aMD = -4.17, 95%CI -6.03 to -2.31) with narrower difference at 3-month postpartum aMD = -0.11 (95%CI -3.23, 3.00). Women described the momentum of INT-CBT as helpful to drive change. CONCLUSIONS: Exposure-based therapies are acceptable to pregnant women. INT-CBT may reduce anxiety quickly and should be tested in a confirmatory trial examining longer term outcomes. There may be limitations to generalisability from sampling and COVID. TRIAL REGISTRATION: doi:https://doi.org/10.1186/ISRCTN81203286 prospectively registered 27/6/2019.
Googling preterm prelabour rupture of the membranes: A systematic review of patient information available on the internet.
BACKGROUND: Preterm prelabour rupture of the membranes (PPROM) complicates 3% of pregnancies and is associated with an increased risk of maternal and perinatal morbidity and mortality. In an attempt to better understand this diagnosis, patients routinely resort to the internet for medical information. The lack of governance online leaves patients at risk of relying on low-quality websites. OBJECTIVES: To assess systematically the accuracy, quality, readability and credibility of World Wide Web pages on PPROM. SEARCH STRATEGY: Five search engines (Google, AOL, Yahoo, Ask and Bing) were searched with location services and browser history disabled. Websites from the first page of all searches were included. SELECTION CRITERIA: Websites were included if they provided at least 300 words of health information aimed at patients relating to PPROM. DATA COLLECTION AND ANALYSIS: Validated assessments of health information readability, credibility and quality were undertaken, as was an accuracy assessment. Pertinent facts for accuracy assessment were based on feedback from healthcare professionals and patients through a survey. Characteristics were tabulated. MAIN RESULTS: In all, 39 websites were included, with 31 different texts. No pages were written with a reading age of 11 years or less, none were considered credible, and only three were high quality. An accuracy score of 50% or more was obtained by 45% of websites. Information that patients considered pertinent was not consistently reported. CONCLUSIONS: Search engines produce information on PPROM that is low quality, low accuracy and not credible. It is also difficult to read. This risks disempowerment. Healthcare professionals and researchers must consider how to ensure patients have access to information that they can recognise as high quality.
Patient and therapist experiences of exposure therapy for anxiety-related disorders in pregnancy: qualitative analysis of a feasibility trial of intensive versus weekly CBT.
BACKGROUND: Approximately 15% of pregnant women experience anxiety disorders. Effective treatments exist but their acceptability during pregnancy, particularly exposure therapy, is not known. AIMS: To understand patient and therapist experiences of time-intensive and weekly exposure-based therapy for anxiety disorders delivered during pregnancy. Trial registration: ISRCTN81203286. METHOD: In-depth interviews were conducted with patients and therapists who had taken part in a feasibility trial of predominantly online time-intensive versus weekly cognitive-behavioural therapy in pregnancy in a primary care setting in the UK. Data were analysed using reflexive thematic analysis. RESULTS: In total, 45 women participating in the trial and 6 therapists who had delivered the treatments were interviewed. Five themes were developed from the data that showed convergence from therapist and patient perspectives: 'Acquiring tools to navigate the perinatal period'; 'Motivated yet constrained by pregnancy'; 'Having the confidence to face fears and tolerate uncertainty'; 'Momentum with the need for flexibility'; 'Being removed from the face-to-face world'. CONCLUSIONS: Exposure therapy is acceptable and helpful in pregnancy and can lead to lasting gains. Exposure is a key element of treatment and needs to be confidently conducted by therapists with perinatal knowledge and expertise. Treatments need to consider the unfolding context of pregnancy. The momentum of intensive therapy can lead to rapid improvements, but is demanding for both patients and therapists, especially fitting round other commitments. Online treatments can work well and are a good fit for perinatal women, but this needs to be balanced with the need for social connection, suggesting a hybrid model is the ideal.
Paternal perinatal stress is associated with children's emotional problems at 2 years.
BACKGROUND: Paternal mental health in pregnancy and postpartum has been increasingly highlighted as important both in its own right, but also as crucial for the development of children. Rates of help-seeking among fathers is low, possibly due to conceptualising their own difficulties as stress rather than problems with mood. The relationship between paternal stress and child outcomes has not been investigated. METHODS: This study used data from the Finnish CHILD-SLEEP birth cohort. Data were available for 901 fathers and 939 mothers who completed questionnaires on demographics, stress, anxiety and depression at 32 weeks gestation, 3 months, 8 months and 24 months postpartum. Parental report of child emotional and behavioural problems was collected at 24 months. RESULTS: Around 7% of fathers experienced high stress (over 90% percentile) at each timepoint measured in the perinatal period, rising to 10% at 2 years postpartum. Paternal stress measured antenatally, at 3 and 24 months was associated with child total problems at 24 months, while paternal depression and anxiety were not related to child outcomes when in the same model. After adjusting for concurrent maternal depression, anxiety and stress, an association remained between paternal stress at each timepoint and child total problem scores at 24 months. The strongest association was with paternal stress at 3 months (OR 3.17; 95% CI 1.63-6.16). There were stronger relationships between paternal stress and boys' rather than girls' total problem scores, although the interactions were not statistically significant. CONCLUSIONS: Paternal stress is an important manifestation of perinatal distress and is related to child mental health, particularly when present in the early postpartum months. Paternal stress should therefore be assessed in the perinatal period, which presents opportunities for early intervention and prevention of difficulties for both father and child.
Preventing anxiety in the children of anxious parents - feasibility of a brief, online, group intervention for parents of one- to three-year-olds.
BACKGROUND: The evidence suggests an increased risk of developing anxiety problems in children of anxious parents. The current study explored the feasibility and acceptability of an intervention with anxious parents of young children, to inform the possibility of further trials. METHODS: Participants were recruited through primary and secondary care psychological services and social media. Participants who had a current or recent anxiety disorder and a child aged 12-47 months were included. Assessments of parental and child outcomes occurred at baseline, after the intervention (week-2) and follow-up (week-8). The intervention was delivered in a small group format, in two sessions, one week apart, using videoconferencing. RESULTS: Out of 32 participants, 30 (94%) attended the full intervention. All found the intervention acceptable and reported it as useful and relevant. There was a reduction in parental depression (MD = 2.63, 95%CI 1.01-4.26), anxiety (MD = 3.93, 95%CI 2.49-5.37) and stress (MD = 4.60, 95% CI 3.02-6.18) and increases in parenting confidence. CONCLUSIONS: The online group intervention was feasible and acceptable. There were moderate to large effects on parental mental health and no adverse effects on children (decline on outcome measures). This indicates that intervening early in parenting with anxious parents is possible and warrants further investigation to establish prevention efficacy with a larger, controlled trial.
Mental health service use among pregnant and early postpartum women.
PURPOSE: To explore the proportion and characteristics of women with a mental disorder who have contact with mental health services during pregnancy and the postnatal period in a maternity service in London. METHODS: Data from the WEll-being in pregNancy stuDY (WENDY), a prospective cohort study, were used. Women were recruited at their first appointment for antenatal care and assessed for mental disorders using the Structured Clinical Interview DSM-IV Axis I/II Disorders for Research. Clinical, sociodemographic and psychosocial characteristics were collected. Mental health service use data were collected for the period from study entry to 3 months postpartum. RESULTS: Two hundred women met diagnostic criteria for a mental disorder. Fifty-five (34%) of these had at least one contact with mental health services. Moderate depression (OR 7.44, CI 2.03-27.28, p
Break Free from Maternal Anxiety
Severe anxiety affects a huge number of women in pregnancy and the postnatal period, making a challenging time even more difficult. You may be suffering from uncontrollable worries about pregnancy and birth, distressing intrusive thoughts of accidental or deliberate harm to the baby, or fears connected to traumatic experiences. This practical self-help guide provides an active route out of feeling anxious. Step-by-step, the book teaches you to apply cognitive behaviour therapy (CBT) techniques in the particular context of pregnancy and becoming a new parent in order to overcome maternal anxiety in all its forms. Working through the book you will gain understanding of your anxiety and how factors from the past and present may be playing a role in how you feel. Together with practical exercises and worksheets to move through at your own pace, you will gain the tools you need to help you move forward and enjoy parenthood.
Unwanted, intrusive thoughts of infant-related harm
Unwanted, intrusive thoughts (UITs) of infant-related harm are a common and normative postpartum experience, particularly among first-time parents. UITs of infant-related harm reflect new parents' intense preoccupation with their infant, and may have evolved to increase hypervigilance to threat in the caregiving environment in order to protect the infant from danger. In this chapter, we will describe the current evidence pertaining to UITs of infant-related harm among new parents. Although UITs of infant-related harm, in particular intentional harm, are frequently a source of distress to those who experience them and raise concerns about infant safety among healthcare providers, there is no evidence that UITs of infant-related harm are associated with an increased risk of parental aggression toward the infant. If UITs of infant-related harm are responded to as if they are dangerous and must be prevented, they can lead to the development of mental health difficulties such as obsessive-compulsive disorder (OCD) and depression. We offer recommendations to healthcare providers with a focus on educating, normalizing, and preventing mental health difficulties that can arise as a result of maladaptive responses to UITs of infant-related harm.