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OBJECTIVE: Describe families' experiences of interventions to improve continence in children and young people with neurodisability, and health professionals' and school and social care staff's perspectives regarding factors affecting intervention use. DESIGN: Four online surveys were developed and advertised to parent carers, young people with neurodisability, health professionals and school and social care staff, via societies, charities, professional contacts, schools, local authorities, and national parent carer and family forums, who shared invitations with their networks. Survey questions explored: difficulties helping children and young people use interventions; acceptability of interventions and waiting times; ease of use and availability of interventions, and facilitators and barriers to improving continence. RESULTS: 1028 parent carers, 26 young people, 352 health professionals and 202 school and social care staff registered to participate. Completed surveys were received from 579 (56.3%) parent carers, 20 (77%) young people, 193 (54.8%) health professionals, and 119 (58.9%) school and social care staff. Common parent carer-reported difficulties in using interventions to help their children and young people to learn to use the toilet included their child's lack of understanding about what was required (reported by 337 of 556 (60.6%) parent carers who completed question) and their child's lack of willingness (343 of 556, 61.7%). Almost all (142 of 156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14 of 19, 74%) were unhappy using toilet facilities while out and about. CONCLUSIONS: Perceptions that children lack understanding and willingness, and inadequate facilities impact the implementation of toileting interventions for children and young people with neurodisability. Greater understanding is needed for children to learn developmentally appropriate toileting skills. Further research is recommended around availability and acceptability of interventions to ensure quality of life is unaffected.
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Parents , Quality of Life , Child , Humans , Adolescent , Health Personnel , Social Support , CaregiversABSTRACT
Background: Evidence and Gap Maps (EGMs) should be regularly updated. Running update searches to find new studies for EGMs can be a time-consuming process. Search Summary Tables (SSTs) can help streamline searches by identifying which resources were most lucrative for identifying relevant articles, and which were redundant. The aim of this study was to use an SST to streamline search methods for an EGM of studies about intergenerational activities. Methods: To produce the EGM, 15 databases were searched. 8638 records were screened and 500 studies were included in the final EGM. Using an SST, we determined which databases and search methods were the most efficient in terms of sensitivity and specificity for finding the included studies. We also investigated whether any database performed particularly well for returning particular study types. For the best performing databases we analysed the search terms used to streamline the strategies. Results: No single database returned all of the studies included in the EGM. Out of 500 studies PsycINFO returned 40% (n = 202), CINAHL 39% (n = 194), Ageline 25% (n = 174), MEDLINE 23% (n = 117), ERIC 20% (n = 100) and Embase 19% (n = 98). HMIC database and Conference Proceedings Citation Index-Science via Web of Science returned no studies that were included in the EGM. ProQuest Dissertations & Theses (PQDT) returned the highest number of unique studies (n = 42), followed by ERIC (n = 33) and Ageline (n = 29). Ageline returned the most randomised controlled trials (42%) followed by CINAHL (34%), MEDLINE (29%) and CENTRAL (29%). CINAHL, Ageline, MEDLINE and PsycINFO performed the best for locating systematic reviews. (62%, 46% and 42% respectively). CINAHL, PsycINFO and Ageline performed best for qualitative studies (41%, 40% and 34%). The Journal of Intergenerational Relationships returned more included studies than any other journal (16%). No combinations of search terms were found to be better in terms of balancing specificity and sensitivity than the original search strategies. However, strategies could be reduced considerably in terms of length without losing key, unique studies. Conclusion: Using SSTs we have developed a method for streamlining update searches for an EGM about intergenerational activities. For future updates we recommend that MEDLINE, PsycINFO, ERIC, Ageline, CINAHL and PQDT are searched. These searches should be supplemented by hand-searching the Journal of Intergenerational Relationships and carrying out backwards citation chasing on new systematic reviews. Using SSTs to analyse database efficiency could be a useful method to help streamline search updates for other EGMs.
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Background: Opportunities for social connection between generations have diminished over the last few decades around the world as a result of changes in the way that we live and work. The COVID-19 pandemic has exacerbated loneliness for many with young and old being kept apart for safety. The Public Health England prevention concordat for better mental health (Office for Health Improvement and Disparities) aims to bring a prevention-focused approach to improving public mental health. The concordat promotes evidence-based planning and commissioning to increase the impact on reducing health inequalities using sustainable and cost-effective interventions that impact on the wider determinants of mental health and wellbeing for children and young people and older people. Intergenerational activities could provide an opportunity to support both populations. In 2023, we produced an evidence and gap map to illustrate the amount and variety of research on intergenerational interventions and the gaps in research that still exist in this area. The review conducted here is based on the evidence in that map. Objectives: This systematic review examines the impact of intergenerational interventions on the wellbeing and mental health of older people and identifies areas for future research as well as key messages for service commissioners. Search Methods: We searched an evidence and gap map published in 2022 (comprehensive searches conducted July 2021 and updated June 2023) to identify randomised controlled trials of intergenerational interventions that report mental health and wellbeing outcomes for older people. Selection Criteria: Randomised controlled trials of intergenerational interventions that involved unrelated younger and older people with at least one skipped generation between them and reported mental health or wellbeing outcomes for older people were included in this review. Data Collection and Analysis: We used standard methodological procedures expected by The Campbell Collaboration. We conducted data extraction and Cochrane risk of bias assessments in EPPI reviewer. Where data allowed meta-analyses were conducted in STATA. Main Results: This review includes 14 trials from six different countries. The trials had some important methodological weaknesses. Interventions were mainly delivered in-person and often in groups. They included visiting programmes, school volunteering programmes, music-based interventions and task-oriented interventions such as activities set in a multigenerational park, reminiscing activities, aggression management programmes, learning a language, making local environmental changes and in-school project work. Intergenerational interventions showed a small positive trend towards improving self-esteem (effect size [ES]: 0.33, 95% confidence interval [CI]: -0.35, 1.01) and depression (ES: 0.19, 95% CI: -0.23, 0.60) for older people participating. However, due to the small study sizes and low number of studies available, we cannot be confident about any effects. The results for other mental health and wellbeing outcomes are reported but due to little overlap in similar assessments across the studies, we could not combine them to assess the strength of evidence. There were no data about social isolation, spiritual health or sense of community. There are no long-term studies and no data on equity. We still know very little about what works and how or why. Whilst some interventions do use theories and logic to inform their development others do not. More exploration of this is needed. Authors' Conclusions: Commissioners and intervention developers should ensure interventions provide sufficient theoretical evidence for the logic behind the proposed intervention and should improve their consideration of equity within the interventions Research on intergenerational interventions need more consistent and agreed measures for reporting outcomes including community outcomes (core outcome sets). More understanding is needed on how best to measure 'community' outcomes. Research on intergenerational interventions should measure outcomes for BOTH the older and younger population engaged in the intervention-these may or may not be the same outcomes reflected in both populations. Further research is needed on the long-term impact of interventions on outcomes (whether participants need to keep being involved in an 'intervention' to continue to benefit) and sustainability of interventions beyond the initial funding of the research project. Supporting this our stakeholders highlighted that interventions that are initiated for research and then end (usually within a year) are not helpful.
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This is the protocol for a Campbell systematic review. The objectives are as follows: this systematic review will examine the impact of intergenerational interventions on the wellbeing and mental health in children and young people and will identify areas for future research as well as key messages for service commissioners.
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This is the protocol for a Campbell systematic review. The objectives are as follows: identify available systematic reviews and randomised controlled trials on interventions targeting health or social needs of the people aged over 80; identify qualitative studies relating to the experiences of people aged over 80 of interventions that target their health or social needs; identify areas where systematic reviews are needed; identify gaps in evidence where further primary research is needed; assess equity considerations (using the PROGRESS plus criteria) in available systematic reviews, randomised trials and qualitative studies of identified interventions; assess gaps and evidence related to health equity.
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This is the protocol for a Campbell systematic review. The objectives are as follows: This systematic review will examine the impact of intergenerational interventions on the mental health and wellbeing of older people and will identify areas for future research as well as key messages for service commissioners.
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Background: Opportunities for social connection between generations in the UK have diminished over the last few decades because of changes in the way that we live and work. The decline in communal spaces such as libraries, youth clubs and community centres mean that there are fewer opportunities to meet and mix socially with other generations outside our own families. Increased working hours, improved technology, changes in family patterns, relationship breakdowns within families and migration are also believed to be contributory factors to generation segregation. There are many potential economic, social and political impacts of generations living separate and parallel lives, for example, higher health and social care costs, an undermining of trust between generations reduced social capital, a reliance on the media to form understanding of others' viewpoints and higher levels of anxiety and loneliness. Intergenerational programmes and activities can take many forms and are delivered in many settings.⯠Evidence suggestsâ¯thatâ¯intergenerational activity can have a positive impact on participants, for example, in reducing loneliness and exclusion for both older people and children and young people, improving mental health, increasing mutual understanding and addressing important issues such as ageism, housing and care. There are currently no other EGMs that exist that address this type of intervention; however, it would complement existing EGMs addressing child welfare. Objectives: To identify, appraise and bring together the evidence on the use of intergenerationalâ¯practice, to answer the following specific research questions: What is the volume, nature and diversity of research on,â¯and evaluation of,â¯intergenerational practice and learning?What approaches have been used to deliver intergenerational activities and programmes that may be relevant to providing such services during and in the subsequent recovery from the COVID-19 pandemic?What promising intergenerational activities and programmes have been developed and are being used but have not yet been subject to formal evaluation? Search Methods: We searched MEDLINE (via OvidSp), EMBASE (via OvidSp), PsycINFO (via OvidSp), CINAHL (via EBSCOHost), Social Policy and Practice (via OvidSp), Health Management Information Consortium (via OvidSp), Ageline (via EBSCOhost), ASSIA (via ProQuest), Social Science Citations Index (via Web of Science), ERIC (via EBSCOhost), Community Care Inform Children, Research in Practice for Children, ChildData (via Social Policy and Practice), the Campbell Library, the Cochrane Database of Systematic Reviews and the CENTRAL database between 22 and 30 July 2021. We searched for additional grey literature via the Conference Proceedings Citation Index (via Web of Science) and ProQuest Dissertation & Theses Global and via relevant organisation websites, for example, Age UK, Age International, the Centre for Ageing Better, Barnado's, Children's Commission, UNICEF, Generations Working Together, the Intergenerational Foundation, Linking Generations and The Beth Johnson Foundation) and the Ottawa initiative called Older Adults and Students for Intergenerational support. Selection Criteria: Any intervention that brings older and younger people together with the purpose of interacting to achieve positive health and/or social and/or educational outcomes from any study design including systematic reviews, randomised controlled studies, observational studies, surveys and qualitative studies are included. The titles and abstracts, and later full texts, of records identified by the search methods were screened against inclusion criteria by two independent reviewers. Data Collection and Analysis: Data extraction was undertaken by one reviewer and checked by a second with any inconsistencies identified and resolved through discussion. The data extraction tool was developed on EPPI reviewer and was modified and tested through stakeholder and advisor consultation, and piloting of the process. The tool was informed by the research question and the structure of the map. We did not undertake quality appraisal of the included studies. Main Results: Our searches identified 12,056 references, after screening 500 research articles were included in the evidence gap map conducted across 27 countries. We identified 26 systematic reviews, 236 quantitative comparative studies (of which 38 were randomised controlled trials), 227 were qualitative studies (or had a qualitative element), 105 were observational studies (or had elements of observational methods) and 82 used a mixed methods approach. The outcomes reported in the research cover mental health (n = 73), physical health (n = 62), attainment and knowledge (n = 165), agency (n = 174), mental wellbeing (n = 224), loneliness and social isolation (n = 54), attitudes towards the other generation (n = 283), intergenerational interactions (n = 196), peer interactions (n = 30) and health promotion (n = 23) and including mutual outcomes such as the impact on community (n = 37) and perceptions on the sense of community (n = 43). Gaps in the evidence that were identified include: research that reports on mutual, societal and community outcomes of intergenerational interventions; more research on interventions classified as levels 1-4 and level 7 on the Intergenerational Engagement Scale, mental health, loneliness, social isolation, peer interactions, physical health and health promotion outcomes in children and young people; health promotion in older people; outcomes centred on care giver wellbeing, mental health and attitudes; economic outcomes; process outcomes and adverse or unexpected outcomes. Authors' Conclusions: Whilst a substantional amount of research on intergenerational interventions has been identified in this EGM, as well as the gaps identified above, there is a need to explore promising interventions not yet formally evaluated. Research on this topic is gradually increasing, and systematic reviews will be important to determine how and why interventions are or are not beneficial. However, the primary research needs to build more cohesively so that the findings can be comparable and avoid research waste. The EGM presented here will nevertheless be a useful resource for decision-makers allowing them to explore the evidence with regard to the different interventions that may be relevant to their population needs and the settings or resources available to them.
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BACKGROUND: There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has largely been on behavioural and psychosocial measured outcomes. Animals, either as companion animals or in the form of pet/animal-assisted therapy, may provide benefits in the form of social contact, as well as opportunities for sensory experiences and meaningful engagement not picked up by outcome tools. This review aimed to create a state-of-knowledge synthesis, bringing together qualitative and quantitative findings, on the impact of animal-human interaction on care home residents and care home staff. METHODS: Fourteen databases were searched from inception to July 2020. Forward and backward citation chasing of included articles was conducted. Screening was undertaken independently by a team of reviewers. Thematic synthesis and meta-analysis were used to synthesise the qualitative and quantitative data. RESULTS: Thirty-four studies, published in 40 articles (20 qualitative and 20 quantitative) were included. Five themes relating to resident wellbeing were identified in the qualitative evidence synthesis. These were animals as 'living beings', reminiscence and storytelling, caring (as 'doing' and 'feeling'), respite (from loneliness, institutionalisation, and illness), and sensory engagement. A sixth theme related to staff perceptions and wellbeing, and a seventh to animal health and wellbeing. Maintaining identity was identified as an overarching theme. The majority of randomised trials had small sample sizes and were rated as low quality, mostly showing no evidence of beneficial effect. There was, however, limited evidence of a positive effect of pet/animal interaction on outcomes of loneliness, anxiety and depression, supporting the themes of respite and sensory engagement. CONCLUSIONS: The presence of animals can significantly impact the health and wellbeing of some care home residents. Residents had meaningful relationships with animals and derived pleasure and comfort from them. Interacting with animals offered residents a way to maintain a sense of self in the care homes, and with support, residents with dementia could also express their identities. Facilitating residents to interact with animals as part of person-centred care may also help residents to feel 'at home' in the care home. TRIAL REGISTRATION: PROSPERO registration no: CRD42017058201.
Subject(s)
Animal Assisted Therapy , Animals , Humans , Long-Term CareABSTRACT
AIMS: To identify strategies used by registered nurses and non-registered nursing care staff in overcoming barriers when providing fundamental nursing care for non-invasively ventilated inpatients with COVID-19. DESIGN: Online survey with open-ended questions to collect qualitative data. METHODS: In August 2020, we asked UK-based nursing staff to describe any strategies they employed to overcome barriers to delivering care in 15 fundamental nursing care categories when providing care to non-invasively ventilated patients with COVID-19. We analysed data using Framework Analysis. RESULTS: A total of 1062 nurses consented to participate in our survey. We derived four themes. 1) Communication behaviours included adapting verbal and non-verbal communication with patients, using information technology to enable patients' significant others to communicate with staff and patients, and establishing clear information-sharing methods with other staff. 2) Organizing care required clustering interventions, carefully managing supplies, encouraging patient self-care and using 'runners' and interdisciplinary input. 3) Addressing patients' well-being and values required spending time with patients, acting in loco familiae, providing access to psychological and spiritual support, obtaining information about patients' wishes early on and providing privacy and comforting/meaningful items. 4) Management and leadership behaviours included training, timely provision of pandemic information, psychological support, team huddles and facilitating regular breaks. CONCLUSIONS: Our respondents identified multiple strategies in four main areas of clinical practice. Management and leadership are crucial to both fundamental care delivery and the well-being of nurses during pandemics. Grouping strategies into these areas of action may assist nurses and leaders to prepare for pandemic nursing. IMPACT: As these strategies are unlikely to be exclusive to the COVID-19 pandemic, their global dissemination may improve patient experience and help nurses deliver fundamental care when planning pandemic nursing. However, their effectiveness is unknown. Therefore, we are currently evaluating these strategies in a cluster randomized controlled trial.
Subject(s)
COVID-19 , Nurses , Nursing Care , Humans , SARS-CoV-2 , Pandemics , Surveys and QuestionnairesABSTRACT
OBJECTIVES: To suggest possible approaches to combatting the impact of the COVID-19 infodemic to prevent research waste in future health emergencies and in everyday research and practice. STUDY DESIGN AND SETTING: Systematic review. The Epistemonikos database was searched in June 2021 for systematic reviews on the effectiveness of convalescent plasma for COVID-19. Two reviewers independently screened the retrieved references with disagreements resolved by discussion. Data extraction was completed by one reviewer with a proportion checked by a second. We used the Assessment of Multiple Systematic Reviews to assess the quality of conduct and reporting of included reviews. RESULTS: Fifty one systematic reviews are included with 193 individual studies included within the systematic reviews. There was considerable duplication of effort; multiple reviews were conducted at the same time with inconsistencies in the evidence included. The reviews were of low methodological quality, poorly reported, and did not adhere to preferred reporting items for systematic reviews and meta-analysis guidance. CONCLUSION: Researchers need to conduct, appraise, interpret, and disseminate systematic reviews better. All in the research community (researchers, peer-reviewers, journal editors, funders, decision makers, clinicians, journalists, and the public) need to work together to facilitate the conduct of robust systematic reviews that are published and communicated in a timely manner, reducing research duplication and waste, increasing transparency and accessibility of all systematic reviews.
Subject(s)
COVID-19 , Humans , COVID-19/therapyABSTRACT
This is the protocol for a Campbell systematic review. The objectives are as follows: identify, appraise and bring together the evidence on the use of intergenerational practice.
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AIM: This systematic review identifies, appraises and synthesizes the evidence on the provision of fundamental nursing care to hospitalized patients with a highly infectious virus and the effectiveness of adaptations to overcome barriers to care. DESIGN: Systematic review. DATA SOURCES: In July 2020, we searched Medline, PsycINFO (OvidSP), CINAHL (EBSCOhost), BNI (ProQuest), WHO COVID-19 Database (https://search.bvsalud.org/) MedRxiv (https://www.medrxiv.org/), bioRxiv (https://www.biorxiv.org/) and also Google Scholar, TRIP database and NICE Evidence, forwards citation searching and reference checking of included papers, from 2016 onwards. REVIEW METHODS: We included quantitative and qualitative research reporting (i) the views, perceptions and experiences of patients who have received fundamental nursing care whilst in hospital with COVID-19, MERS, SARS, H1N1 or EVD or (ii) the views, perceptions and experiences of professional nurses and non-professionally registered care workers who have provided that care. We included review articles, commentaries, protocols and guidance documents. One reviewer performed data extraction and quality appraisal and was checked by another person. RESULTS: Of 3086 references, we included 64 articles; 19 empirical research and 45 review articles, commentaries, protocols and guidance documents spanning five pandemics. Four main themes (and 11 sub-themes) were identified. Barriers to delivering fundamental care were wearing personal protective equipment, adequate staffing, infection control procedures and emotional challenges of care. These barriers were addressed by multiple adaptations to communication, organization of care, staff support and leadership. CONCLUSION: To prepare for continuation of the COVID-19 pandemic and future pandemics, evaluative studies of adaptations to fundamental healthcare delivery must be prioritized to enable evidence-based care to be provided in future. IMPACT: Our review identifies the barriers nurses experience in providing fundamental care during a pandemic, highlights potential adaptations that address barriers and ensure positive healthcare experiences and draws attention to the need for evaluative research on fundamental care practices during pandemics.
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COVID-19 , Influenza A Virus, H1N1 Subtype , Hospitals , Humans , Pandemics , Patient Outcome Assessment , Quality of Health Care , SARS-CoV-2ABSTRACT
OBJECTIVE: The academic and scientific community has reacted at pace to gather evidence to help and inform about COVID-19. Concerns have been raised about the quality of this evidence. The aim of this review was to map the nature, scope and quality of evidence syntheses on COVID-19 and to explore the relationship between review quality and the extent of researcher, policy and media interest. DESIGN AND SETTING: A meta-research: systematic review of reviews. INFORMATION SOURCES: PubMed, Epistemonikos COVID-19 evidence, the Cochrane Library of Systematic Reviews, the Cochrane COVID-19 Study Register, EMBASE, CINAHL, Web of Science Core Collection and the WHO COVID-19 database, searched between 10 June 2020 and 15 June 2020. ELIGIBILITY CRITERIA: Any peer-reviewed article reported as a systematic review, rapid review, overview, meta-analysis or qualitative evidence synthesis in the title or abstract addressing a research question relating to COVID-19. Articles described as meta-analyses but not undertaken as part of a systematic or rapid review were excluded. STUDY SELECTION AND DATA EXTRACTION: Abstract and full text screening were undertaken by two independent reviewers. Descriptive information on review type, purpose, population, size, citation and attention metrics were extracted along with whether the review met the definition of a systematic review according to six key methodological criteria. For those meeting all criteria, additional data on methods and publication metrics were extracted. RISK OF BIAS: For articles meeting all six criteria required to meet the definition of a systematic review, AMSTAR-2 ((A MeaSurement Tool to Assess systematic Reviews, version 2.0) was used to assess the quality of the reported methods. RESULTS: 2334 articles were screened, resulting in 280 reviews being included: 232 systematic reviews, 46 rapid reviews and 2 overviews. Less than half reported undertaking critical appraisal and a third had no reproducible search strategy. There was considerable overlap in topics, with discordant findings. Eighty-eight of the 280 reviews met all six systematic review criteria. Of these, just 3 were rated as of moderate or high quality on AMSTAR-2, with the majority having critical flaws: only a third reported registering a protocol, and less than one in five searched named COVID-19 databases. Review conduct and publication were rapid, with 52 of the 88 systematic reviews reported as being conducted within 3 weeks, and a half published within 3 weeks of submission. Researcher and media interest, as measured by altmetrics and citations, was high, and was not correlated with quality. DISCUSSION: This meta-research of early published COVID-19 evidence syntheses found low-quality reviews being published at pace, often with short publication turnarounds. Despite being of low quality and many lacking robust methods, the reviews received substantial attention across both academic and public platforms, and the attention was not related to the quality of review methods. INTERPRETATION: Flaws in systematic review methods limit the validity of a review and the generalisability of its findings. Yet, by being reported as 'systematic reviews', many readers may well regard them as high-quality evidence, irrespective of the actual methods undertaken. The challenge especially in times such as this pandemic is to provide indications of trustworthiness in evidence that is available in 'real time'. PROSPERO REGISTRATION NUMBER: CRD42020188822.
Subject(s)
COVID-19 , Humans , Infodemic , Pandemics , Systematic Reviews as TopicABSTRACT
BACKGROUND: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. OBJECTIVE: The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. DESIGN: A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. RESULTS: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. LIMITATIONS: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. CONCLUSIONS: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. FUTURE WORK: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018100572. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.
Learning to go to the toilet is an important skill. Becoming continent involves knowing when you need to go, holding on until you find the right place, going to the toilet, cleaning and getting dressed again. Many children and young people with special educational needs or disability can learn to become clean and dry, sometimes with help or equipment. Advice is not consistent about the best ways to assess and treat continence problems for children and young people with neurodisability. This research aimed to find out how families and professionals measure and improve continence, and if there was evidence about which treatments are useful. We brought together the results of studies that have tested ways of assessing and improving toilet training for children and young people with special educational needs or disability. We carried out four online surveys with health professionals, education and care staff, parent carers, and disabled young people. We brought together and explained the findings from the surveys and the studies with help from parent carers and professionals. Approaches to improving continence vary depending on whether or not the child or young person's nerves and muscles that control their bladder and bowel work properly. Children and young people with conditions affecting the nerves and muscles of their bladder and bowel are often helped by medical or surgical treatments. Children and young people with conditions such as learning disability or autism may benefit from behavioural therapies to help them learn to use the toilet. There is poor evidence for how well treatments work and whether or not they are value for money. More and better research is needed to make sure that children and young people are able to be clean and dry without pads, maximising their independence, dignity and comfort. This also requires an adequate number of fully accessible toilets in the community.
Subject(s)
Parents , Technology Assessment, Biomedical , Adolescent , Child , Cost-Benefit Analysis , Cross-Sectional Studies , Humans , Surveys and QuestionnairesABSTRACT
BACKGROUND: Patient experience of nursing care is associated with safety, care quality, treatment outcomes, costs and service use. Effective nursing care includes meeting patients' fundamental physical, relational and psychosocial needs, which may be compromised by the challenges of SARS-CoV-2. No evidence-based nursing guidelines exist for patients with SARS-CoV-2. We report work to develop such a guideline. Our aim was to identify views and experiences of nursing staff on necessary nursing care for inpatients with SARS-CoV-2 (not invasively ventilated) that is omitted or delayed (missed care) and any barriers to this care. METHODS: We conducted an online mixed methods survey structured according to the Fundamentals of Care Framework. We recruited a convenience sample of UK-based nursing staff who had nursed inpatients with SARS-CoV-2 not invasively ventilated. We asked respondents to rate how well they were able to meet the needs of SARS-CoV-2 patients, compared to non-SARS-CoV-2 patients, in 15 care categories; select from a list of barriers to care; and describe examples of missed care and barriers to care. We analysed quantitative data descriptively and qualitative data using Framework Analysis, integrating data in side-by-side comparison tables. RESULTS: Of 1062 respondents, the majority rated mobility, talking and listening, non-verbal communication, communicating with significant others, and emotional wellbeing as worse for patients with SARS-CoV-2. Eight barriers were ranked within the top five in at least one of the three care areas. These were (in rank order): wearing Personal Protective Equipment, the severity of patients' conditions, inability to take items in and out of isolation rooms without donning and doffing Personal Protective Equipment, lack of time to spend with patients, lack of presence from specialised services e.g. physiotherapists, lack of knowledge about SARS-CoV-2, insufficient stock, and reluctance to spend time with patients for fear of catching SARS-CoV-2. CONCLUSIONS: Our respondents identified nursing care areas likely to be missed for patients with SARS-CoV-2, and barriers to delivering care. We are currently evaluating a guideline of nursing strategies to address these barriers, which are unlikely to be exclusive to this pandemic or the environments represented by our respondents. Our results should, therefore, be incorporated into global pandemic planning.
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INTRODUCTION: Patient experience of nursing care is correlated with safety, clinical effectiveness, care quality, treatment outcomes and service use. Effective nursing care includes actions to develop nurse-patient relationships and deliver physical and psychosocial care to patients. The high risk of transmission of the SARS-CoV-2 virus compromises nursing care. No evidence-based nursing guidelines exist for patients infected with SARS-CoV-2, leading to potential variations in patient experience, outcomes, quality and costs. METHODS AND ANALYSIS: we aim to recruit 840 in-patient participants treated for infection with the SARS-CoV-2 virus from 14 UK hospitals, to a cluster randomised controlled trial, with embedded process and economic evaluations, of care as usual and a fundamental nursing care protocol addressing specific areas of physical, relational and psychosocial nursing care where potential variation may occur, compared with care as usual. Our coprimary outcomes are patient-reported experience (Quality from the Patients' Perspective; Relational Aspects of Care Questionnaire); secondary outcomes include care quality (pressure injuries, falls, medication errors); functional ability (Barthell Index); treatment outcomes (WHO Clinical Progression Scale); depression Patient Health Questionnaire-2 (PHQ-2), anxiety General Anxiety Disorder-2 (GAD-2), health utility (EQ5D) and nurse-reported outcomes (Measure of Moral Distress for Health Care Professionals). For our primary analysis, we will use a standard generalised linear mixed-effect model adjusting for ethnicity of the patient sample and research intensity at cluster level. We will also undertake a planned subgroup analysis to compare the impact of patient-level ethnicity on our primary and secondary outcomes and will undertake process and economic evaluations. ETHICS AND DISSEMINATION: Research governance and ethical approvals are from the UK National Health Service Health Research Authority Research Ethics Service. Dissemination will be open access through peer-reviewed scientific journals, study website, press and online media, including free online training materials on the Open University's FutureLearn web platform. TRIAL REGISTRATION NUMBER: ISRCTN13177364; Pre-results.
Subject(s)
COVID-19 , SARS-CoV-2 , Hospitals , Humans , Randomized Controlled Trials as Topic , Respiration, Artificial , State Medicine , Treatment OutcomeABSTRACT
BACKGROUND: Missed hospital outpatient appointments is a commonly reported problem in healthcare services around the world; for example, they cost the National Health Service (NHS) in the UK millions of pounds every year and can cause operation and scheduling difficulties worldwide. In 2002, the World Health Organization (WHO) published a report highlighting the need for a model of care that more readily meets the needs of people with chronic conditions. Patient-initiated appointment systems may be able to meet this need at the same time as improving the efficiency of hospital appointments. OBJECTIVES: To assess the effects of patient-initiated appointment systems compared with consultant-led appointment systems for people with chronic or recurrent conditions managed in secondary care. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, and six other databases. We contacted authors of identified studies and conducted backwards and forwards citation searching. We searched for current/ongoing research in two trial registers. Searches were run on 13 March 2019. SELECTION CRITERIA: We included randomised trials, published and unpublished in any language that compared the use of patient-initiated appointment systems to consultant-led appointment systems for adults with chronic or recurrent conditions managed in secondary care if they reported one or more of the following outcomes: physical measures of health status or disease activity (including harms), quality of life, service utilisation or cost, adverse effects, patient or clinician satisfaction, or failures of the 'system'. DATA COLLECTION AND ANALYSIS: Two review authors independently screened all references at title/abstract stage and full-text stage using prespecified inclusion criteria. We resolved disagreements though discussion. Two review authors independently completed data extraction for all included studies. We discussed and resolved discrepancies with a third review author. Where needed, we contacted authors of included papers to provide more information. Two review authors independently assessed the risk of bias using the Cochrane Effective Practice and Organisation of Care 'Risk of bias' tool, resolving any discrepancies with a third review author. Two review authors independently assessed the certainty of the evidence using GRADE. MAIN RESULTS: The 17 included randomised trials (3854 participants; mean age 41 to 76 years; follow-up 12 to 72 months) covered six broad health conditions: cancer, rheumatoid arthritis, asthma, chronic obstructive pulmonary disease, psoriasis and inflammatory bowel disease. The certainty of the evidence using GRADE ratings was mainly low to very low. The results suggest that patient-initiated clinics may make little or no difference to anxiety (odds ratio (OR) 0.87, 95% confidence interval (CI) 0.68 to 1.12; 5 studies, 1019 participants; low-certainty evidence) or depression (OR 0.79 95% CI 0.51 to 1.23; 6 studies, 1835 participants; low-certainty evidence) compared to the consultant-led appointment system. The results also suggest that patient-initiated clinics may make little or no difference to quality of life (standardised mean difference (SMD) 0.12, 95% CI 0.00 to 0.25; 7 studies, 1486 participants; low-certainty evidence) compared to the consultant-led appointment system. Results for service utilisation (contacts) suggest there may be little or no difference in service utilisation in terms of contacts between the patient-initiated and consultant-led appointment groups; however, the effect is not certain as the rate ratio ranged from 0.68 to 3.83 across the studies (median rate ratio 1.11, interquartile (IQR) 0.93 to 1.37; 15 studies, 3348 participants; low-certainty evidence). It is uncertain if service utilisation (costs) are reduced in the patient-initiated compared to the consultant-led appointment groups (8 studies, 2235 participants; very low-certainty evidence). The results suggest that adverse events such as relapses in some conditions (inflammatory bowel disease and cancer) may have little or no reduction in the patient-initiated appointment group in comparison with the consultant-led appointment group (MD -0.20, 95% CI -0.54 to 0.14; 3 studies, 888 participants; low-certainty evidence). The results are unclear about any differences the intervention may make to patient satisfaction (SMD 0.05, 95% CI -0.41 to 0.52; 2 studies, 375 participants) because the certainty of the evidence is low, as each study used different questions to collect their data at different time points and across different health conditions. Some areas of risk of bias across all the included studies was consistently high (i.e. for blinding of participants and personnel and blinding of outcome assessment, other areas were largely of low risk of bias or were affected by poor reporting making the assessment unclear). AUTHORS' CONCLUSIONS: Patient-initiated appointment systems may have little or no effect on patient anxiety, depression and quality of life compared to consultant-led appointment systems. Other aspects of disease status and experience also appear to show little or no difference between patient-initiated and consultant-led appointment systems. Patient-initiated appointment systems may have little or no effect on service utilisation in terms of service contact and there is uncertainty about costs compared to consultant-led appointment systems. Patient-initiated appointment systems may have little or no effect on adverse events such as relapse or patient satisfaction compared to consultant-led appointment systems.
Subject(s)
Appointments and Schedules , Chronic Disease/therapy , Secondary Care/methods , Adult , Aged , Ambulatory Care , Anxiety/psychology , Chronic Disease/psychology , Consultants , Depression/psychology , Female , Health Services Needs and Demand/statistics & numerical data , Humans , Male , Middle Aged , No-Show Patients , Patient Satisfaction , Quality of Life , Randomized Controlled Trials as Topic , RecurrenceABSTRACT
BACKGROUND: Robopets are small animal-like robots which have the appearance and behavioural characteristics of pets. OBJECTIVE: To bring together the evidence of the experiences of staff, residents and family members of interacting with robopets and the effects of robopets on the health and well-being of older people living in care homes. DESIGN: Systematic review of qualitative and quantitative research. DATA SOURCES: We searched 13 electronic databases from inception to July 2018 and undertook forward and backward citation chasing. METHODS: Eligible studies reported the views and experiences of robopets from residents, family members and staff (qualitative studies using recognised methods of qualitative data collection and analysis) and the effects of robopets on the health and well-being of care home residents (randomised controlled trials, randomised crossover trials and cluster randomised trials). Study selection was undertaken independently by two reviewers. We used the Wallace criteria and the Cochrane Risk of Bias tool to assess the quality of the evidence. We developed a logic model with stakeholders and used this as a framework to guide data extraction and synthesis. Where appropriate, we used meta-analysis to combine effect estimates from quantitative studies. RESULTS: Nineteen studies (10 qualitative, 2 mixed methods and 7 randomised trials) met the inclusion criteria. Interactions with robopets were described as having a positive impact on aspects of well-being including loneliness, depression and quality of life by residents and staff, although there was no corresponding statistically significant evidence from meta-analysis for these outcomes. Meta-analysis showed evidence of a reduction in agitation with the robopet "Paro" compared to control (-0.32 [95% CI -0.61 to -0.04, p = 0.03]). Not everyone had a positive experience of robopets. CONCLUSIONS: Engagement with robopets appears to have beneficial effects on the health and well-being of older adults living in care homes, but not all chose to engage. Whether the benefits can be sustained are yet to be investigated. IMPLICATIONS FOR PRACTICE: Robopets have the potential to benefit people living in care homes, through increasing engagement and interaction. With the robopet acting as a catalyst, this engagement and interaction may afford comfort and help reduce agitation and loneliness.
Subject(s)
Health Status , Homes for the Aged , Mental Health , Pets/psychology , Robotics , Aged , Aged, 80 and over , Animals , Humans , Quality of LifeABSTRACT
BACKGROUND: Parents of babies admitted to neonatal units experience an arduous emotional journey. Feelings of helplessness, fear, sadness, guilt, grief and anger are common. These feelings can lead to anxiety, depression and post-traumatic stress which may persist long after discharge from the unit. Support from a parent with first-hand experience able to empathise with problems and challenges may help. This systematic review will identify quantitative and qualitative evidence to address the role of parent-to-parent support interventions for families of babies cared for in neonatal units, and combine the findings in an integrated synthesis. METHODS: We are working in collaboration with a study-specific Parent Advisory Group (PAG) of parents who have relevant and varied lived experience of having a baby in neonatal care and those who have been involved in providing peer support. With the PAG, we will carry out a systematic review bringing together all existing research on parent-to-parent support for parents of babies cared for in neonatal units. This will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The protocol has been produced in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol extension (PRISMA-P). We have co-produced a plain language protocol summary with the PAG which details the different stages of the project, and this is available via our website ( http://clahrc-peninsula.nihr.ac.uk/research/parent-to-parent-support ) for anyone interested in learning more about the detail of the project. DISCUSSION: All outputs will be available on the NIHR CLAHRC South West Peninsula (PenCLAHRC) website and promoted via PenCLAHRC networks as well as organisations that have been contacted throughout the project. PAG members will be involved in writing and reviewing the academic paper and final report and in co-producing dissemination products such as plain language summaries. The PAG will influence the main conclusions of the systematic review, aid interpretation and help to communicate results in the most appropriate ways. We will hold an impact conference with representatives from neonatal units, national neonatal networks, commissioners of services and parents to discuss what the findings mean for clinical practice and service provision. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018090569.
Subject(s)
Intensive Care, Neonatal/psychology , Parents/psychology , Peer Group , Psychosocial Support Systems , Emotions , Humans , Infant , Infant, Newborn , Qualitative Research , Systematic Reviews as TopicABSTRACT
OBJECTIVES: Between 4% and 25% of school-aged children complain of recurrent abdominal pain (RAP) severe enough to interfere with their daily activities. METHODS: We carried out a systematic review of randomised controlled trials (RCTs) in eleven databases and 2 trials registries from inception to June 2016. An update search was run in November 2017. All screening was performed by 2 independent reviewers. Included studies were appraised using the Cochrane risk of bias tool and the evidence assessed using GRADE. We included any dietary, pharmacological or psychosocial intervention for RAP, defined by Apley or an abdominal pain-related functional gastrointestinal disorder, as defined by the Rome III criteria, in children and adolescents. RESULTS: We included 55 RCTs, involving 3572 children with RAP (21 dietary, 15 pharmacological, 19 psychosocial, and 1 multiarm). We found probiotic diets, cognitive-behavioural therapy (CBT) and hypnotherapy were reported to reduce pain in the short-term and there is some evidence of medium term effectiveness. There was insufficient evidence of effectiveness for all other dietary interventions and psychosocial therapies. There was no robust evidence of effectiveness for pharmacological interventions. CONCLUSIONS: Overall the evidence base for treatment decisions is poor. These data suggest that probiotics, CBT, and hypnotherapy could be considered as part of holistic management of children with RAP. The evidence regarding relative effectiveness of different strains of probiotics is currently insufficient to guide clinical practice. The lack of evidence of effectiveness for any drug suggests that there is little justification for their use outside of well-conducted clinical trials. There is an urgent need for high-quality RCTs to provide evidence to guide management of this common condition.