Coproducing a library of videos to support families caring for children with gastrostomies: A mixed-methods evaluation with family carers and clinicians.

INTRODUCTION: Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. METHODS: A mixed-methods online survey evaluating the videos was completed by 43 family carers who care for children with gastrostomies and 33 healthcare professionals (community-based nurses [n = 16], paediatricians [n = 6], dieticians [n = 6], hospital-based nurses [n = 4], paediatric surgeon [n = 1]) from the United Kingdom. Participants watched a sample of videos, rated statements on the videos and reflected on how the videos could be best used in practice. RESULTS: Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the use of videos in practice. All healthcare professionals and 98% (n = 42) of family carers agreed they would recommend the videos to other families. Family carers found the videos empowering and easy to follow and valued the mixture of healthcare professionals and families featured in the videos. Participants gave clear recommendations for how different video topics should fit within the existing patient pathway. DISCUSSION: Families and healthcare professionals perceived the videos to be an extremely useful resource for parents, supporting them practically and emotionally. Similar coproduced educational materials are needed to support families who perform other medical procedures at home. PATIENT OR PUBLIC CONTRIBUTION: Two parent representatives attended the research meetings from conception of the project and were involved in the design, conduct and dissemination of the surveys. The videos themselves were coproduced with several different families.

The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.

BACKGROUND: Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. METHODS: We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. RESULTS: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. DISCUSSION: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

Validation of the Partners at Care Transitions Measure (PACT-M): assessing the quality and safety of care transitions for older people in the UK.

BACKGROUND: The Partners at Care Transitions Measure (PACT-M) is a patient-reported questionnaire for evaluation of the quality and safety of care transitions from hospital to home, as experienced by older adults. PACT-M has two components; PACT-M 1 to capture the immediate post discharge period and PACT-M 2 to assess the experience of managing care at home. In this study, we aim to examine the psychometric properties, factor structure, validity and reliability of the PACT-M. METHODS: We administered the PACT-M over the phone and by mail, within one week post discharge with 138 participants and one month after discharge with 110 participants. We performed principal components analysis and factors were assessed for internal consistency, reliability and construct validity. RESULTS: Reliability was assessed by calculating Cronbach's alpha for the 9-item PACT-M 1 and 8-item PACT-M 2 and exploratory factor analysis was performed to evaluate dimensionality of the scales. Principal components analysis was chosen using pair-wise deletion. Both PACT-M 1 and PACT-M 2 showed high internal consistency and good internal reliability values and conveyed unidimensional scale characteristics with high reliability scores; above 0.8. CONCLUSIONS: The PACT-M has shown evidence to suggest that it is a reliable measure to capture patients' perception of the quality of discharge arrangements and also on patients' ability to manage their care at home one month post discharge. PACT-M 1 is a marker of patient experience of transition and PACT-M 2 of coping at home.

Adaptive strategies used by surgical teams under pressure: an interview study among senior healthcare professionals in four major hospitals in the United Kingdom.

BACKGROUND: Healthcare systems are operating under substantial pressures, and often simply cannot provide the standard of care they aspire to within the available resources. Organisations, managers, and individual clinicians make constant adaptations in response to these pressures, which are typically improvised, highly variable and not coordinated across clinical teams. The purpose of this study was to identify and describe the types of everyday pressures experienced by surgical teams and the adaptive strategies they use to respond to these pressures. METHODS: We conducted interviews with 20 senior multidisciplinary healthcare professionals from surgical teams in four major hospitals in the United Kingdom. The interviews explored the types of everyday pressures staff were experiencing, the strategies they use to adapt, and how these strategies might be taught to others. RESULTS: The primary pressures described by senior clinicians in surgery were increased numbers and complexity of patients alongside shortages in staff, theatre space and post-surgical beds. These pressures led to more difficult working conditions (e.g. high workloads) and problems with system functioning such as patient flow and cancellation of lists. Strategies for responding to these pressures were categorised into increasing or flexing resources, controlling and prioritising patient demand and strategies for managing the workload (scheduling for efficiency, communication and coordination, leadership, and teamwork strategies). CONCLUSIONS: Teams are deploying a range of strategies and making adaptations to the way care is delivered. These findings could be used as the basis for training programmes for surgical teams to develop coordinated strategies for adapting under pressure and to assess the impact of different combinations of strategies on patient safety and surgical outcomes.

Assessing progress in managing and improving quality in nascent integrated care systems in England.

OBJECTIVES: In 2022, England embarked on an ambitious reorganisation to produce an integrated health and care system, intended also to maximise population health. The newly created integrated care systems (ICSs) aim to improve quality of care, by achieving the best outcomes for individuals and populations through the provision of evidence-based services. An emerging approach for managing quality in organisations is the Quality Management System (QMS) framework. Using the framework, this study assessed how ICSs are managing and improving quality. METHODS: Four ICSs were purposively sampled, with the data collected between November 2021 and May 2022. Semi-structured interviews with system leaders (n=60) from health and social care, public health and local representatives were held. We also observed key ICS meetings and reviewed relevant documents. A thematic framework approach based on the QMS framework was used to analyse the data. RESULTS: The ICSs placed an emphasis on population health, reducing inequity and improving access. This represents a shift in focus from the traditional clinical approach to quality. There were tensions between quality assurance and improvement, with concerns that a narrow focus on assurance would impede ICSs from addressing broader quality issues, such as tackling inequalities and unwarranted variation in care and outcomes. Partnerships, a key enabler for integration, was seen as integral to achieving improvements in quality. Overall, the ICSs expressed concerns that any progress made in quality development and in improving population health would be tempered by unprecedented system pressures. CONCLUSION: It is unclear whether ICSs can achieve their ambition. As they move away from an assurance-dominated model of quality to one that emphasises openness, learning and improvement, they must simultaneously build the digital infrastructure, staff expertise and culture to support such a shift.

Health services under pressure: a scoping review and development of a taxonomy of adaptive strategies.

OBJECTIVE: The objective of this review was to develop a taxonomy of pressures experienced by health services and an accompanying taxonomy of strategies for adapting in response to these pressures. The taxonomies were developed from a review of observational studies directly assessing care delivered in a variety of clinical environments. DESIGN: In the first phase, a scoping review of the relevant literature was conducted. In the second phase, pressures and strategies were systematically coded from the included papers, and categorised. DATA SOURCES: Electronic databases (MEDLINE, Embase, CINAHL, PsycInfo and Scopus) and reference lists from recent reviews of the resilient healthcare literature. ELIGIBILITY CRITERIA: Studies were included from the resilient healthcare literature, which used descriptive methodologies to directly assess a clinical environment. The studies were required to contain strategies for managing under pressure. RESULTS: 5402 potential articles were identified with 17 papers meeting the inclusion criteria. The principal source of pressure described in the studies was the demand for care exceeding capacity (ie, the resources available), which in turn led to difficult working conditions and problems with system functioning. Strategies for responding to pressures were categorised into anticipatory and on-the-day adaptations. Anticipatory strategies included strategies for increasing resources, controlling demand and plans for managing the workload (efficiency strategies, forward planning, monitoring and co-ordination strategies and staff support initiatives). On-the-day adaptations were categorised into: flexing the use of existing resources, prioritising demand and adapting ways of working (leadership, teamwork and communication strategies). CONCLUSIONS: The review has culminated in an empirically based taxonomy of pressures and an accompanying taxonomy of strategies for adapting in response to these pressures. The taxonomies could help clinicians and managers to optimise how they respond to pressures and may be used as the basis for training programmes and future research evaluating the impact of different strategies.

Coproduced resources to support parents caring for children with gastrostomies.

Objective: To describe and disseminate a package of support for parents who care for children with gastrostomies, consisting of a library of videos and resources to support families from referral for gastrostomy surgery, to long-term support at home. Methods: The resources were systematically developed and evaluated by parents, hospital and community-based nurses, paediatricians, a surgeon and researchers. Results: The videos empower families, reduce their anxiety and increase their confidence, providing support throughout the families' journey. Surveys and feedback from parents and clinicians show that the video library is seen as providing clear and comprehensive guidance and is suitable for integration into routine practice. To effectively disseminate these resources across a region, the videos need to be shared widely with relevant community and hospital-based teams, and shared through parent networks. The videos should be viewed as one part of a wider package of training and support, in combination with hands-on-practice and clinical support. Conclusions: The resources described have been developed with and for families. Critically the videos are founded in the lived-experience of families, as well as the expertise of clinicians from community and hospital services. Similar resources are needed to support families performing other types of specialist care. The resources are freely available to any parent or clinical team.

Luck perception is associated with less frequent preventive practices and a higher number of social contacts among adults during the SARS-CoV-2 pandemic.

Objectives: Non-pharmaceutical interventions have been crucial to reduce transmission of the SARS-CoV-2 virus in many countries including the United Kingdom. A key research priority has been to better understand psychological and social determinants of health behaviours. We aimed to quantify the impact of luck perception on contact and preventive behaviours among adults in the UK, adjusting for key confounders. Study design: A cross-sectional study. Methods: Data were collected between July 28 and August 31, 2020. Luck perception, which refers to a belief whether individual's SARS-CoV-2 infection status is determined by fate or chance, was measured using Chance score, drawing on Health Locus of Control Theory. Self-reporting online questionnaires were administered to obtain participants' contact patterns and frequencies of avoiding crowds, hand washing and wearing a mask. Associations between luck perception and protective behaviours and contact patterns were quantified using regression models. Results: Data from 233 survey respondents were analysed. Chance score was negatively associated with all protective behaviours; avoiding crowds (adjusted odds ratio (aOR) 0.46, 95% confidence interval (CI) 0.25-0.86, p = 0.02), washing hands (aOR 0.35, 95%CI 0.17-0.70, p = 0.003), and wearing masks (aOR 0.58, 95%CI 0.34-0.99, p = 0.046). For non-physical contacts (with or without distancing), a significant interaction was identified between Chance score and ethnicity. Chance score increased the number of non-physical contacts among white British, an opposite trend was observed for non-white participants. Conclusions: Luck perception during the pandemic may affect individuals' health protection behaviours and contact patterns. Further mechanistic understandings of human behaviours against infectious diseases are indispensable for effective response to future pandemics.

Training and support for caring for a child's gastrostomy: a survey with family carers.

Objective: The aim of this study was to explore family carers' experiences of training and ongoing support for caring for their child's gastrostomy, and to get their views on how this could be improved. Methods: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who care for a child with a gastrostomy. Family carers rated their own experience of training and support and made recommendations for how training and support could be improved for future families. Results: The nature and extent of the training family carers reported receiving varied considerably. Many felt that the demonstrations they received in hospital were too brief. Two in five family carers rated their confidence caring for their child's gastrostomy as very low in the first few weeks after surgery. Parents valued ongoing learning and support from other parents and support from community nurses. Videos and simulation practice were rated as useful formats of training, in addition to face-to-face supervised practice with a clinician. Parents liked how real life the example video shown was, and rated nearly all suggested video topics as 'very helpful', especially troubleshooting topics. Conclusions: Our study found substantial variability in family carers' descriptions of the training and support they received to care for their child's gastrostomy. Training often did not meet family carers' needs. We need to invest in better training and support for families and learn from their recommendations. Improvements to training and support for families (eg, through instructional videos) have the potential to improve family carers' confidence and competence, and reduce the risk of problems and complications which cause harm to children and increase demand on National Health Service (NHS) resources.

Analysis of paediatric long-term ventilation incidents in the community.

AIM: To describe the nature and causes of reported patient safety incidents relating to care in the community for children dependent on long-term ventilation with the further aim of improving safety. METHODS: We undertook an analysis of patient safety incident data relating to long-term ventilation in the community using incident reports from England and Wales' National Reporting and Learning System occurring between January 2013 and December 2017. Manual screening by two authors identified 220 incidents which met the inclusion criteria. The free text for each report was descriptively analysed to identify the problems in the delivery of care, the contributory factors and the patient outcome. RESULTS: Common problems in the delivery of care included issues with faulty equipment and the availability of equipment, and concerns around staff competency. There was a clearly stated harm to the child in 89 incidents (40%). Contributory factors included staff shortages, out of hours care, and issues with packaging and instructions for equipment. CONCLUSIONS: This study identifies a range of problems relating to long-term ventilation in the community, some of which raise serious safety concerns. The provision of services to support children on long-term ventilation and their families needs to improve. Priorities include training of staff, maintenance and availability of equipment, support for families and coordination of care.

Informing the management of acute malnutrition in infants aged under 6 months (MAMI): risk factor analysis using nationally-representative demographic & health survey secondary data.

BACKGROUND: Tackling malnutrition is a global health priority, helping children both survive and thrive. Acute malnutrition (wasting) in infants aged under 6 months (u6m) is often neglected. Worldwide, some 8.5 million infants u6m are affected yet recent World Health Organization malnutrition guidelines highlight numerous evidence gaps on how to best manage them. To inform future research, policy and programming, we aimed to identify risk factors associated with infant u6m wasting. METHODS: We did secondary data analysis of nationally representative, cross sectional Demographic and Health Surveys conducted in the last 10 years. We compared wasted infants u6m (weight-for-length <-2 z-scores) vs. non-wasted (weight-for-length ≥-2 z-score). We used simple and adjusted (for infant age, sex, socio-economic status) logistic regression to calculate odds of wasting associated with risk factors spanning three broad categories: household-related; maternal-related; infant-related. RESULTS: We analysed 16,123 infants u6m from 20 countries. Multiple risk factors were statistically associated with wasting. These included: poverty (Odds ratio, OR 1.22 (95% CI [1.01-1.48], p = 0.04)); low maternal body mass index (adjusted OR 1.53(1.29-1.80, p < 0.001); small infant size at birth (aOR 1.32(1.10-1.58, p < 0.01)); delayed start of breastfeeding (aOR 1.31(1.13-1.51, p < 0.001)); prelacteal feed (aOR 1.34(1.18-1.53, p < 0.001)); recent history of diarrhoea (aOR 1.37(1.12-1.67, p < 0.01)); mother disempowered (experiences violence; does not make decisions about health issues; does not engage with health services such as antenatal care, does not give birth in a health facility). 'Protective' factors associated with significantly decreased odds of infant u6m wasting included: educated mother (OR 0.64(0.54-0.76, p < 0.001)); mother in work (OR 0.82(0.72-0.94, p < 0.01)); currently breastfed (aOR 0.62(0.42-0.91, p = 0.02)), exclusively breastfed (aOR 0.84(0.73-0.97, p = 0.02). DISCUSSION: Infant u6m wasting is a complex, multifactorial problem associated with many risk factors; knowing them will help shape international and national management strategies. Whilst our observational study cannot prove causation, many factors identified are biologically plausible and/or socially important. They should be considered when assessing and managing infants u6m. Although supporting breastfeeding is core to future interventions, this alone is unlikely to be sufficient; strategies should involve multiple sectors, beyond just health and nutrition. By noting our results, future intervention studies could focus resources and maximise chances of achieving impact.

Paediatric enteral feeding at home: an analysis of patient safety incidents.

AIMS: To describe the nature and causes of patient safety incidents relating to care at home for children with enteral feeding devices. METHODS: We analysed incident data relating to paediatric nasogastric, gastrostomy or jejunostomy feeding at home from England and Wales' National Reporting and Learning System between August 2012 and July 2017. Manual screening by two authors identified 274 incidents which met the inclusion criteria. Each report was descriptively analysed to identify the problems in the delivery of care, the contributory factors and the patient outcome. RESULTS: The most common problems in care related to equipment and devices (n=98, 28%), procedures and treatments (n=86, 24%), information, training and support needs of families (n=54, 15%), feeds (n=52, 15%) and discharge from hospital (n=31, 9%). There was a clearly stated harm to the child in 52 incidents (19%). Contributory factors included staff/service availability, communication between services and the circumstances of the family carer. CONCLUSIONS: There are increasing numbers of children who require specialist medical care at home, yet little is known about safety in this context. This study identifies a range of safety concerns relating to enteral feeding which need further investigation and action. Priorities for improvement are handovers between hospital and community services, the training of family carers, the provision and expertise of services in the community, and the availability and reliability of equipment. Incident reports capture a tiny subset of the total number of adverse events occurring, meaning the scale of problems will be greater than the numbers suggest.

Improving communication at handover and transfer reduces retained swabs in maternity services.

OBJECTIVE: To reduce the incidence of retained vaginal swabs and near misses. STUDY DESIGN: A review of previous retained swab incidents and near misses in a large maternity unit identified handovers and transfers as a key point of vulnerability. Interventions were introduced to improve communication at handover from the delivery suite to theatre and from theatre to the high dependency unit. Process data was collected to monitor compliance. The outcome measures were the incidence of retained swab never events and the incidence of near misses. Chi-squared analysis was used to test the significance of the results. RESULTS: For transfers from delivery suite to theatre, verbal handover significantly increased from 28.8% to 75.6% (p<0.0001), and written handover significantly increased from 4.4% to 62.9% (p<0.0001). There were 291 transfers to theatre post-intervention: in 88 (30.2%) of these transfers a vaginal swab was already in situ. In 70/88 (79.5%) of cases the presence of the swab was communicated to theatre staff in three ways (verbally, written and transfer of opened swab packets) according to the new policy. In the post-intervention period there were 56 women transferred from theatre to the high-dependency unit with a vaginal pack in situ: 52 (92.9%) of these women had a sticker in place serving as a constant reminder of the presence of the vaginal pack to staff. Following a baseline of four near misses in two months, there has been only one near miss in the 15 months since the interventions were implemented, (33.3% vs. 1.1%, p<0.0001). There have been no retained swab incidents since the project commenced. CONCLUSIONS: Simple interventions to improve communication at handover and transfer can reduce the incidence of retained vaginal swabs and near misses. Further work is needed to raise the profile of swab counting in maternity settings: swab counting needs to be the responsibility of all disciplines, not just the responsibility of theatre staff.

Response Inconsistency of Patient-Reported Symptoms as a Predictor of Discrepancy Between Patient and Clinician-Reported Depression Severity.

The aim of this study was to assess the extent to which discrepancy between self-reported and clinician-rated severity of depression are due to inconsistent self-reports. Response inconsistency threatens the validity of the test score. We used data from a large sample of outpatients ( N = 5,959) who completed the self-report Beck Depression Inventory-II (BDI-II) and the clinician-rated Montgomery-Åsberg Depression Rating Scale (MADRS). We used item response theory based person-fit analysis to quantify the inconsistency of the self-report item scores. Inconsistency was weakly positively related to patient-clinician discrepancy (i.e., higher BDI-II scores relative to MADRS scores). The mediating effect of response inconsistency in the relationship between discrepancy and demographic (e.g., ethnic origin) and clinical variables (e.g., cognitive problems) was negligible. The small direct and mediating effects of response inconsistency suggest that inaccurate patient self-reports are not a major cause of patient-clinician discrepancy in outpatient samples. Future research should investigate the role of clinician biases in explaining clinician-patient discrepancy.

Defining and measuring suspicion of sepsis: an analysis of routine data.

OBJECTIVES: To define the target population of patients who have suspicion of sepsis (SOS) and to provide a basis for assessing the burden of SOS, and the evaluation of sepsis guidelines and improvement programmes. DESIGN: Retrospective analysis of routinely collected hospital administrative data. SETTING: Secondary care, eight National Health Service (NHS) Acute Trusts. PARTICIPANTS: Hospital Episode Statistics data for 2013-2014 was used to identify all admissions with a primary diagnosis listed in the 'suspicion of sepsis' (SOS) coding set. The SOS coding set consists of all bacterial infective diagnoses. RESULTS: We identified 47 475 admissions with SOS, equivalent to a rate of 17 admissions per 1000 adults in a given year. The mortality for this group was 7.2% during their acute hospital admission. Urinary tract infection was the most common diagnosis and lobar pneumonia was associated with the most deaths. A short list of 10 diagnoses can account for 85% of the deaths. CONCLUSIONS: Patients with SOS can be identified in routine administrative data. It is these patients who should be screened for sepsis and are the target of programmes to improve the detection and treatment of sepsis. The effectiveness of such programmes can be evaluated by examining the outcomes of patients with SOS.

Absconding: reducing failure to return in adult mental health wards.

Failing to return from leave from acute psychiatric wards can have a range of negative consequences for patients, relatives and staff. This study used quality improvement methodology to improve the processes around patient leave and time away from the ward. The aim of this study was to improve rates of on-time return from leave by detained and informal patients by 50%. Following a baseline period, four interventions were implemented and refined using PDSA cycles. The main outcome measure was the proportion of periods of leave where the patient returned on time. Late return was defined as failure to return to the ward within 10 minutes of the agreed time. At baseline, the rate for on-time return was 56.0%; this increased to 87.1% post-intervention, a statistically significant increase of 55.5%. SPC charts show that the interventions were associated with improvements. The improvements have been sustained and the interventions are fully embedded into daily practice. The project was refined to local context and trialled on six additional wards: four of the six wards have successfully implemented the interventions and have on-time return rates of over 90%. This project produced a marked and sustained improvement in patients returning on-time from leave, facilitating a more open discussion between staff and patients about the purpose and value of periods away from the ward. Quality improvement approaches can be effectively applied in mental health settings.