H. Coelho, A. Price, Fraizer Kiff, Laura Trigg, S. Robinson, J. Thompson Coon, R. Anderson
Mental health problems are common among children and young people in the UK. Some young people from ethnic minority backgrounds experience mental health problems in different ways from those from non-ethnic minority backgrounds. Furthermore, those from ethnic minority backgrounds often experience greater difficulties in accessing mental health support and variable levels of engagement with services, and may prefer different support to their white British peers. To describe the nature and scope of qualitative research about the experiences of children and young people from ethnic minority backgrounds in seeking or obtaining care or support for mental health problems. We searched seven bibliographic databases (Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, MEDLINE, PsycInfo®, Health Management Information Consortium, Social Policy and Practice, and Web of Science) using relevant terms on 23 June 2021. The scoping review included qualitative research about young people’s experiences of seeking or engaging with services or support for mental health problems. Included studies were published from 2012 onwards, were from the UK, were about those aged 10–24 years and were focused on those from ethnic minority backgrounds (i.e. not white British). Study selection, data extraction and quality assessment (with ‘Wallace’ criteria) were conducted by two reviewers. We provide a descriptive summary of the aims, scope, sample, methods and quality of the included studies, and a selected presentation of authors’ findings (i.e. no formal synthesis). From 5335 unique search records, we included 26 papers or reports describing 22 diverse qualitative studies. Most of the studies were well conducted and clearly described. There were studies of refugees/asylum seekers (n = 5), university students (n = 4) and studies among young people experiencing particular mental health problems (n = 14) (some studies appear in multiple categories): schizophrenia or psychosis (n = 3), eating disorders (n = 3), post-traumatic stress disorder (n = 3, in asylum seekers), substance misuse (n = 2), self-harm (n = 2) and obsessive–compulsive disorder (n = 1). There were also three studies of ethnic minority young people who were receiving particular treatments (cognitive–behavioural therapy, multisystemic therapy for families and a culturally adapted family-based talking therapy). Most studies had been conducted with young people or their parents from a range of different ethnic backgrounds. However, nine studies were conducted with particular ethnic groups: asylum seekers from Afghanistan (n = 2), and black and South Asian (n = 2), black African and black Caribbean (n = 2), South Asian (n = 1), Pakistani or Bangladeshi (n = 1) and Orthodox Jewish (n = 1) people. The studies suggested a range of factors that influence care-seeking and access to mental health care, in terms of the beliefs and knowledge of
{"title":"Experiences of children and young people from ethnic minorities in accessing mental health care and support: rapid scoping review","authors":"H. Coelho, A. Price, Fraizer Kiff, Laura Trigg, S. Robinson, J. Thompson Coon, R. Anderson","doi":"10.3310/xkwe8437","DOIUrl":"https://doi.org/10.3310/xkwe8437","url":null,"abstract":"\u0000 \u0000 Mental health problems are common among children and young people in the UK. Some young people from ethnic minority backgrounds experience mental health problems in different ways from those from non-ethnic minority backgrounds. Furthermore, those from ethnic minority backgrounds often experience greater difficulties in accessing mental health support and variable levels of engagement with services, and may prefer different support to their white British peers.\u0000 \u0000 \u0000 \u0000 To describe the nature and scope of qualitative research about the experiences of children and young people from ethnic minority backgrounds in seeking or obtaining care or support for mental health problems.\u0000 \u0000 \u0000 \u0000 We searched seven bibliographic databases (Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, MEDLINE, PsycInfo®, Health Management Information Consortium, Social Policy and Practice, and Web of Science) using relevant terms on 23 June 2021.\u0000 \u0000 \u0000 \u0000 The scoping review included qualitative research about young people’s experiences of seeking or engaging with services or support for mental health problems. Included studies were published from 2012 onwards, were from the UK, were about those aged 10–24 years and were focused on those from ethnic minority backgrounds (i.e. not white British). Study selection, data extraction and quality assessment (with ‘Wallace’ criteria) were conducted by two reviewers. We provide a descriptive summary of the aims, scope, sample, methods and quality of the included studies, and a selected presentation of authors’ findings (i.e. no formal synthesis).\u0000 \u0000 \u0000 \u0000 From 5335 unique search records, we included 26 papers or reports describing 22 diverse qualitative studies. Most of the studies were well conducted and clearly described. There were studies of refugees/asylum seekers (n = 5), university students (n = 4) and studies among young people experiencing particular mental health problems (n = 14) (some studies appear in multiple categories): schizophrenia or psychosis (n = 3), eating disorders (n = 3), post-traumatic stress disorder (n = 3, in asylum seekers), substance misuse (n = 2), self-harm (n = 2) and obsessive–compulsive disorder (n = 1). There were also three studies of ethnic minority young people who were receiving particular treatments (cognitive–behavioural therapy, multisystemic therapy for families and a culturally adapted family-based talking therapy). Most studies had been conducted with young people or their parents from a range of different ethnic backgrounds. However, nine studies were conducted with particular ethnic groups: asylum seekers from Afghanistan (n = 2), and black and South Asian (n = 2), black African and black Caribbean (n = 2), South Asian (n = 1), Pakistani or Bangladeshi (n = 1) and Orthodox Jewish (n = 1) people. The studies suggested a range of factors that influence care-seeking and access to mental health care, in terms of the beliefs and knowledge of","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41639927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J. Chudleigh, Pru Holder, Francesco Fusco, J. Bonham, M. Bryon, L. Moody, Stephen Morris, E. Olander, Alan Simpson, Holly Chinnery, F. Ulph, K. Southern
Newborn bloodspot screening identifies presymptomatic babies who are affected by genetic or congenital conditions. Each year, around 10,000 parents of babies born in England are given a positive newborn bloodspot screening result for one of nine conditions that are currently screened for. Despite national guidance, variation exists regarding the approaches used to communicate these results to families; poor communication practices can lead to various negative sequelae. Identify and quantify approaches that are currently used to deliver positive newborn bloodspot screening results to parents (phase 1). Develop (phase 2), implement and evaluate (phase 3) co-designed interventions for improving the delivery of positive newborn bloodspot screening results. Quantify the resources required to deliver the co-designed interventions in selected case-study sites and compare these with costs associated with current practice (phase 3). This was a mixed-methods study using four phases, with defined outputs underpinned by Family Systems Theory. All newborn bloodspot screening laboratories in England (n = 13). Laboratory staff and clinicians involved in processing or communicating positive newborn bloodspot screening results, and parents of infants who had received a positive or negative newborn bloodspot screening result. Three co-designed interventions that were developed during phase 2 and implemented during phase 3 of the study. Acceptability of the co-designed interventions for the communication of positive newborn bloodspot screening results. Staff were acutely aware of the significance of a positive newborn bloodspot screening result and the impact that this could have on families. Challenges existed when communicating results from laboratories to relevant clinicians, particularly in the case of congenital hypothyroidism. Clinicians who were involved in the communication of positive newborn bloodspot screening results were committed to making sure that the message, although distressing for parents, was communicated well. Despite this, variation in communication practices existed. This was influenced by many factors, including the available resources and lack of clear guidance. Although generally well received, implementation of the co-designed interventions in practice served to illuminate barriers to acceptability and feasibility. The interventions would not influence NHS expenditure and could be cost neutral when delivered by teleconsultations. Participants with a pre-existing interest in this topic may have been more likely to self-select into the study. The researchers are experienced in this field, which may have biased data collection and analysis. COVID-19 hindered implementation and related data collection of the co-designed interventions. There was variation in the processes used to report positive newborn bloodspot screening results from newborn bloodspot screening laboratories
{"title":"Co-designed strategies for delivery of positive newborn bloodspot screening results to parents: the ReSPoND mixed-methods study","authors":"J. Chudleigh, Pru Holder, Francesco Fusco, J. Bonham, M. Bryon, L. Moody, Stephen Morris, E. Olander, Alan Simpson, Holly Chinnery, F. Ulph, K. Southern","doi":"10.3310/htxh9624","DOIUrl":"https://doi.org/10.3310/htxh9624","url":null,"abstract":"\u0000 \u0000 Newborn bloodspot screening identifies presymptomatic babies who are affected by genetic or congenital conditions. Each year, around 10,000 parents of babies born in England are given a positive newborn bloodspot screening result for one of nine conditions that are currently screened for. Despite national guidance, variation exists regarding the approaches used to communicate these results to families; poor communication practices can lead to various negative sequelae.\u0000 \u0000 \u0000 \u0000 Identify and quantify approaches that are currently used to deliver positive newborn bloodspot screening results to parents (phase 1). Develop (phase 2), implement and evaluate (phase 3) co-designed interventions for improving the delivery of positive newborn bloodspot screening results. Quantify the resources required to deliver the co-designed interventions in selected case-study sites and compare these with costs associated with current practice (phase 3).\u0000 \u0000 \u0000 \u0000 This was a mixed-methods study using four phases, with defined outputs underpinned by Family Systems Theory.\u0000 \u0000 \u0000 \u0000 All newborn bloodspot screening laboratories in England (n = 13).\u0000 \u0000 \u0000 \u0000 Laboratory staff and clinicians involved in processing or communicating positive newborn bloodspot screening results, and parents of infants who had received a positive or negative newborn bloodspot screening result.\u0000 \u0000 \u0000 \u0000 Three co-designed interventions that were developed during phase 2 and implemented during phase 3 of the study.\u0000 \u0000 \u0000 \u0000 Acceptability of the co-designed interventions for the communication of positive newborn bloodspot screening results.\u0000 \u0000 \u0000 \u0000 Staff were acutely aware of the significance of a positive newborn bloodspot screening result and the impact that this could have on families. Challenges existed when communicating results from laboratories to relevant clinicians, particularly in the case of congenital hypothyroidism. Clinicians who were involved in the communication of positive newborn bloodspot screening results were committed to making sure that the message, although distressing for parents, was communicated well. Despite this, variation in communication practices existed. This was influenced by many factors, including the available resources and lack of clear guidance. Although generally well received, implementation of the co-designed interventions in practice served to illuminate barriers to acceptability and feasibility. The interventions would not influence NHS expenditure and could be cost neutral when delivered by teleconsultations.\u0000 \u0000 \u0000 \u0000 Participants with a pre-existing interest in this topic may have been more likely to self-select into the study. The researchers are experienced in this field, which may have biased data collection and analysis. COVID-19 hindered implementation and related data collection of the co-designed interventions.\u0000 \u0000 \u0000 \u0000 There was variation in the processes used to report positive newborn bloodspot screening results from newborn bloodspot screening laboratories ","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49291019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Michael W Pritchard, Amy Robinson, S. R. Lewis, Sue Gibson, Antony Chuter, R. Copeland, Euan Lawson, Andrew F. Smith
In England, more than 4 million hospital admissions lead to surgery each year. The perioperative encounter (from initial presentation in primary care to postoperative return to function) offers potential for substantial health gains in the wider sense and over the longer term. The aim was to identify, examine and set in context a range of interventions applied perioperatively to facilitate physical activity in the medium to long term. The following databases were searched – Cochrane Central Register of Controlled Trials, MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, EMBASE, PsycINFO and SPORTDiscus in October 2020. Clinical trials databases were also searched, and backward and forward citation searches were conducted. We undertook a systematic review; ran database searches in October 2020; extracted data; conducted risk-of-bias assessments of studies; and used Grading of Recommendations Assessment, Development and Evaluation assessments. We conducted focus groups and interviews with people running services designed to promote physical activity, to understand the practical and contextual factors that make such interventions ‘work’. Although the two streams of work were conducted independently, we considered overlapping themes from their findings. In the review, we found 51 randomised controlled trials and two quasi-randomised trials; nine non-randomised studies formed a supplementary data set. Studies included 8604 adults who had undergone (or were undergoing) surgery, and compared 67 interventions facilitating physical activity. Most interventions were started postoperatively and included multiple components, grouped as follows: education and advice, behavioural mechanisms and physical activity instruction. Outcomes were often measured using different tools; pooling of data was not always feasible. Compared with usual care, interventions may have slightly increased the amount of physical activity, engagement in physical activity and health-related quality of life at the study’s end (moderate-certainty evidence). We found low-certainty evidence of an increase in physical fitness and a reduction in pain, although effects generally favoured interventions. Few studies reported adherence and adverse events; certainty of these findings was very low. Although infrequently reported, participants generally provided positive feedback. For the case studies, we conducted two online focus groups and two individual interviews between November 2020 and January 2021, with nine participants from eight services of physical activity programmes. Conceptual and practical aspects included how the promotion of physical activity can be framed around the individual to recruit and retain patients; how services benefit from committed and compassionate staff; how enthusiasts, data collection and evidence play key roles; and how digital delivery could work as part of a blended approach, but inequalities in access must
{"title":"Perioperative exercise programmes to promote physical activity in the medium to long term: systematic review and qualitative research","authors":"Michael W Pritchard, Amy Robinson, S. R. Lewis, Sue Gibson, Antony Chuter, R. Copeland, Euan Lawson, Andrew F. Smith","doi":"10.3310/nzpn0787","DOIUrl":"https://doi.org/10.3310/nzpn0787","url":null,"abstract":"\u0000 \u0000 In England, more than 4 million hospital admissions lead to surgery each year. The perioperative encounter (from initial presentation in primary care to postoperative return to function) offers potential for substantial health gains in the wider sense and over the longer term.\u0000 \u0000 \u0000 \u0000 The aim was to identify, examine and set in context a range of interventions applied perioperatively to facilitate physical activity in the medium to long term.\u0000 \u0000 \u0000 \u0000 The following databases were searched – Cochrane Central Register of Controlled Trials, MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, EMBASE, PsycINFO and SPORTDiscus in October 2020. Clinical trials databases were also searched, and backward and forward citation searches were conducted.\u0000 \u0000 \u0000 \u0000 We undertook a systematic review; ran database searches in October 2020; extracted data; conducted risk-of-bias assessments of studies; and used Grading of Recommendations Assessment, Development and Evaluation assessments. We conducted focus groups and interviews with people running services designed to promote physical activity, to understand the practical and contextual factors that make such interventions ‘work’. Although the two streams of work were conducted independently, we considered overlapping themes from their findings.\u0000 \u0000 \u0000 \u0000 In the review, we found 51 randomised controlled trials and two quasi-randomised trials; nine non-randomised studies formed a supplementary data set. Studies included 8604 adults who had undergone (or were undergoing) surgery, and compared 67 interventions facilitating physical activity. Most interventions were started postoperatively and included multiple components, grouped as follows: education and advice, behavioural mechanisms and physical activity instruction. Outcomes were often measured using different tools; pooling of data was not always feasible. Compared with usual care, interventions may have slightly increased the amount of physical activity, engagement in physical activity and health-related quality of life at the study’s end (moderate-certainty evidence). We found low-certainty evidence of an increase in physical fitness and a reduction in pain, although effects generally favoured interventions. Few studies reported adherence and adverse events; certainty of these findings was very low. Although infrequently reported, participants generally provided positive feedback. For the case studies, we conducted two online focus groups and two individual interviews between November 2020 and January 2021, with nine participants from eight services of physical activity programmes. Conceptual and practical aspects included how the promotion of physical activity can be framed around the individual to recruit and retain patients; how services benefit from committed and compassionate staff; how enthusiasts, data collection and evidence play key roles; and how digital delivery could work as part of a blended approach, but inequalities in access must ","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47082260","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
S. Latter, N. Campling, J. Birtwistle, A. Richardson, M. Bennett, D. Meads, A. Blenkinsopp, L. Breen, Zoe Edwards, C. Sloan, E. Miller, S. Ewings, M. Santer, Lesley Roberts
Patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and unplanned admission to hospital. The limited evidence suggested problems with different components of service delivery and, to the best of our knowledge, the impact of innovations in end-of-life service delivery has remained unevaluated. To provide an evaluation of patient and carer access to medicines at end of life within the context of models of service delivery. The study used a multiphase mixed-methods design, comprising (1) a systematic literature review; (2) an online questionnaire survey of health-care professionals delivering end-of-life care; (3) evaluative mixed-method case studies of service delivery models, including cost and cost-effectiveness analysis; (4) interviews with community pharmacists and pharmaceutical wholesalers and distributors; and (5) an expert consensus-building workshop. Community and primary care end-of-life services in England. Health-care professionals delivering end-of-life care and patients living at home in the last 12 months of life and their carers. A systematic review identified a lack of evidence on service delivery models and patient experiences of accessing medicines at end of life. A total of 1327 health-care professionals completed an online survey. The findings showed that general practitioners remain a predominant route for patients to access prescriptions, but nurses and primary care-based pharmacists are also actively contributing. However, only 42% of clinical nurse specialists and 27% of community nurses were trained as prescribers. The majority (58%) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Health-care professionals’ satisfaction with access to shared patient records to facilitate medicines access was low, with 39% of health-care professionals either not at all or only slightly satisfied. Respondents perceived that there would be a significant improvement in pain control if access to medicines was greater. Case studies (n = 4) highlighted differences in speed and ease of access to medicines between service delivery models. Health-care professionals’ co-ordination facilitated the access process. The work of co-ordination was frequently burdensome, for example because general practitioner services were hard to access or because the stock of community pharmacy medicines was unreliable. Prescription cost differentials between services were substantial when accounting for the eligible population over the medium term. The supply chain generally ensured stocks of palliative medicines, but this was underpinned by onerous work by community pharmacists navigating multiple complex systems and wholesaler interfaces. Patient records lacked sufficient detail for timelines to be constructed. Commissioners of community pharmacy services and wholesalers and distributors were
{"title":"Patient and carer access to medicines at end of life: the ActMed mixed-methods study","authors":"S. Latter, N. Campling, J. Birtwistle, A. Richardson, M. Bennett, D. Meads, A. Blenkinsopp, L. Breen, Zoe Edwards, C. Sloan, E. Miller, S. Ewings, M. Santer, Lesley Roberts","doi":"10.3310/fiqe5189","DOIUrl":"https://doi.org/10.3310/fiqe5189","url":null,"abstract":"\u0000 \u0000 Patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and unplanned admission to hospital. The limited evidence suggested problems with different components of service delivery and, to the best of our knowledge, the impact of innovations in end-of-life service delivery has remained unevaluated.\u0000 \u0000 \u0000 \u0000 To provide an evaluation of patient and carer access to medicines at end of life within the context of models of service delivery.\u0000 \u0000 \u0000 \u0000 The study used a multiphase mixed-methods design, comprising (1) a systematic literature review; (2) an online questionnaire survey of health-care professionals delivering end-of-life care; (3) evaluative mixed-method case studies of service delivery models, including cost and cost-effectiveness analysis; (4) interviews with community pharmacists and pharmaceutical wholesalers and distributors; and (5) an expert consensus-building workshop.\u0000 \u0000 \u0000 \u0000 Community and primary care end-of-life services in England.\u0000 \u0000 \u0000 \u0000 Health-care professionals delivering end-of-life care and patients living at home in the last 12 months of life and their carers.\u0000 \u0000 \u0000 \u0000 A systematic review identified a lack of evidence on service delivery models and patient experiences of accessing medicines at end of life. A total of 1327 health-care professionals completed an online survey. The findings showed that general practitioners remain a predominant route for patients to access prescriptions, but nurses and primary care-based pharmacists are also actively contributing. However, only 42% of clinical nurse specialists and 27% of community nurses were trained as prescribers. The majority (58%) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Health-care professionals’ satisfaction with access to shared patient records to facilitate medicines access was low, with 39% of health-care professionals either not at all or only slightly satisfied. Respondents perceived that there would be a significant improvement in pain control if access to medicines was greater. Case studies (n = 4) highlighted differences in speed and ease of access to medicines between service delivery models. Health-care professionals’ co-ordination facilitated the access process. The work of co-ordination was frequently burdensome, for example because general practitioner services were hard to access or because the stock of community pharmacy medicines was unreliable. Prescription cost differentials between services were substantial when accounting for the eligible population over the medium term. The supply chain generally ensured stocks of palliative medicines, but this was underpinned by onerous work by community pharmacists navigating multiple complex systems and wholesaler interfaces.\u0000 \u0000 \u0000 \u0000 Patient records lacked sufficient detail for timelines to be constructed. Commissioners of community pharmacy services and wholesalers and distributors were ","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44098715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
S. Kingsbury, L. Smith, C. C. Czoski Murray, R. Pinedo-Villanueva, A. Judge, R. West, Chris Smith, J. Wright, N. Arden, Christine M Thomas, Spryos Kolovos, F. Shuweihdi, C. Garriga, Byron KY Bitanihirwe, K. Hill, J. Matu, M. Stone, P. Conaghan
Joint replacement surgery has revolutionised the management of degenerative joint disease. Increasing demand for surgery and post-surgical reviews has overwhelmed orthopaedic services and, consequently, many centres have reduced or stopped follow-up. Such disinvestment is without an evidence base and raises questions regarding the consequences to patients. To produce evidence- and consensus-based recommendations as to how, when and on whom follow-up should be conducted. Our research question was ‘Is it safe to disinvest in mid- to late-term follow-up of hip and knee replacement?’. The study comprised three complementary evidence synthesis work packages to inform a final consensus process. Work package 1 was a systematic review of the clinical effectiveness and cost-effectiveness literature. Work package 2 used routine national data sets (i.e. the Clinical Practice Research Datalink–Hospital Episode Statistics, Hospital Episode Statistics–National Joint Registry–patient-reported outcome measures) to identify pre, peri and postoperative predictors of mid- to late-term revision, and prospective data from 560 patients to understand how patients present for revision surgery. Work package 3 used a Markov model to simulate the survival, health-related quality of life and NHS costs of patients following hip or knee replacement surgery. Finally, evidence from work packages 1–3 informed a face-to-face consensus panel, which involved 32 stakeholders. Our overarching statements are as follows: (1) these recommendations apply to post primary hip and knee replacement follow-up; (2) the 10-year time point in these recommendations is based on a lack of robust evidence beyond 10 years; and (3) in these recommendations, the term ‘complex cases’ refers to individual patient and surgical factors that may increase the risk of replacement failure. Our recommendations are as follows: for Orthopaedic Data Evaluation Panel 10A* (ODEP-10A*) minimum implants, it is safe to disinvest in routine follow-up from 1 to 10 years post non-complex hip and knee replacement provided that there is rapid access to orthopaedic review; (2) for ODEP-10A* minimum implants in complex cases or non-ODEP-10A* minimum implants, periodic follow-up post hip and knee replacement may be required from 1 to 10 years; (3) at 10 years post hip and knee replacement, clinical and radiographic evaluation is recommended; and (4) after 10 years post hip and knee replacement, frequency of further follow-up should be based on the 10-year assessment (note that ongoing rapid access to orthopaedic review is still required) [Stone M, Smith L, Kingsbury S, Czoski-Murray C, Judge A, Pinedo-Villanueva R, et al. Evidence-based follow-up recommendations following primary hip and knee arthroplasty (UK SAFE). Orthop Proc 2020;102–B:13. https://doi.org/10.1302/1358-992X.2020.5.013]. The current absence of data beyond 10 years restricted the evidence base. For ODEP-10A* prostheses, t
{"title":"Safety of disinvestment in mid- to late-term follow-up post primary hip and knee replacement: the UK SAFE evidence synthesis and recommendations","authors":"S. Kingsbury, L. Smith, C. C. Czoski Murray, R. Pinedo-Villanueva, A. Judge, R. West, Chris Smith, J. Wright, N. Arden, Christine M Thomas, Spryos Kolovos, F. Shuweihdi, C. Garriga, Byron KY Bitanihirwe, K. Hill, J. Matu, M. Stone, P. Conaghan","doi":"10.3310/kodq0769","DOIUrl":"https://doi.org/10.3310/kodq0769","url":null,"abstract":"\u0000 \u0000 Joint replacement surgery has revolutionised the management of degenerative joint disease. Increasing demand for surgery and post-surgical reviews has overwhelmed orthopaedic services and, consequently, many centres have reduced or stopped follow-up. Such disinvestment is without an evidence base and raises questions regarding the consequences to patients.\u0000 \u0000 \u0000 \u0000 To produce evidence- and consensus-based recommendations as to how, when and on whom follow-up should be conducted. Our research question was ‘Is it safe to disinvest in mid- to late-term follow-up of hip and knee replacement?’.\u0000 \u0000 \u0000 \u0000 The study comprised three complementary evidence synthesis work packages to inform a final consensus process. Work package 1 was a systematic review of the clinical effectiveness and cost-effectiveness literature. Work package 2 used routine national data sets (i.e. the Clinical Practice Research Datalink–Hospital Episode Statistics, Hospital Episode Statistics–National Joint Registry–patient-reported outcome measures) to identify pre, peri and postoperative predictors of mid- to late-term revision, and prospective data from 560 patients to understand how patients present for revision surgery. Work package 3 used a Markov model to simulate the survival, health-related quality of life and NHS costs of patients following hip or knee replacement surgery. Finally, evidence from work packages 1–3 informed a face-to-face consensus panel, which involved 32 stakeholders.\u0000 \u0000 \u0000 \u0000 Our overarching statements are as follows: (1) these recommendations apply to post primary hip and knee replacement follow-up; (2) the 10-year time point in these recommendations is based on a lack of robust evidence beyond 10 years; and (3) in these recommendations, the term ‘complex cases’ refers to individual patient and surgical factors that may increase the risk of replacement failure. Our recommendations are as follows: for Orthopaedic Data Evaluation Panel 10A* (ODEP-10A*) minimum implants, it is safe to disinvest in routine follow-up from 1 to 10 years post non-complex hip and knee replacement provided that there is rapid access to orthopaedic review; (2) for ODEP-10A* minimum implants in complex cases or non-ODEP-10A* minimum implants, periodic follow-up post hip and knee replacement may be required from 1 to 10 years; (3) at 10 years post hip and knee replacement, clinical and radiographic evaluation is recommended; and (4) after 10 years post hip and knee replacement, frequency of further follow-up should be based on the 10-year assessment (note that ongoing rapid access to orthopaedic review is still required) [Stone M, Smith L, Kingsbury S, Czoski-Murray C, Judge A, Pinedo-Villanueva R, et al. Evidence-based follow-up recommendations following primary hip and knee arthroplasty (UK SAFE). Orthop Proc 2020;102–B:13. https://doi.org/10.1302/1358-992X.2020.5.013].\u0000 \u0000 \u0000 \u0000 The current absence of data beyond 10 years restricted the evidence base.\u0000 \u0000 \u0000 \u0000 For ODEP-10A* prostheses, t","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43202844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T. Willis, A. Wright-Hughes, Anja Weller, S. Alderson, Stephanie Wilson, R. Walwyn, S. Wood, F. Lorencatto, A. Farrin, S. Hartley, J. Francis, Valentine Seymour, J. Brehaut, H. Colquhoun, J. Grimshaw, N. Ivers, R. Feltbower, J. Keen, Benjamin C Brown, J. Presseau, C. Gale, S. Stanworth, R. Foy
National clinical audit programmes aim to improve patient care by reviewing performance against explicit standards and directing action towards areas not meeting those standards. Their impact can be improved by (1) optimising feedback content and format, (2) strengthening audit cycles and (3) embedding randomised trials evaluating different ways of delivering feedback. The objectives were to (1) develop and evaluate the effects of modifications to feedback on recipient responses, (2) identify ways of strengthening feedback cycles for two national audits and (3) explore opportunities, costs and benefits of national audit participation in a programme of trials. An online fractional factorial screening experiment (objective 1) and qualitative interviews (objectives 2 and 3). Participants were clinicians and managers involved in five national clinical audits – the National Comparative Audit of Blood Transfusions, the Paediatric Intensive Care Audit Network, the Myocardial Ischaemia National Audit Project, the Trauma Audit & Research Network and the National Diabetes Audit – (objective 1); and clinicians, members of the public and researchers (objectives 2 and 3). We selected and developed six online feedback modifications through three rounds of user testing. We randomised participants to one of 32 combinations of the following recommended specific actions: comparators reinforcing desired behaviour change; multimodal feedback; minimised extraneous cognitive load for feedback recipients; short, actionable messages followed by optional detail; and incorporating ‘the patient voice’ (objective 1). The outcomes were intended actions, including enactment of audit standards (primary outcome), comprehension, user experience and engagement (objective 1). For objective 1, the primary analysis included 638 randomised participants, of whom 566 completed the outcome questionnaire. No modification independently increased intended enactment of audit standards. Minimised cognitive load improved comprehension (+0.1; p = 0.014) and plans to bring audit findings to colleagues’ attention (+0.13, on a –3 to +3 scale; p = 0.016). We observed important cumulative synergistic and antagonistic interactions between modifications, participant role and national audit. The analysis in objective 2 included 19 interviews assessing the Trauma Audit Research Network and the National Diabetes Audit. The identified ways of strengthening audit cycles included making performance data easier to understand and guiding action planning. The analysis in objective 3 identified four conditions for effective collaboration from 31 interviews: compromise – recognising capacity and constraints; logistics – enabling data sharing, audit quality and funding; leadership – engaging local stakeholders; and relationships – agreeing shared priorities and needs. The perceived benefits of collaboration outweighed the risks. The online experiment assessed
{"title":"Interventions to optimise the outputs of national clinical audits to improve the quality of health care: a multi-method study including RCT","authors":"T. Willis, A. Wright-Hughes, Anja Weller, S. Alderson, Stephanie Wilson, R. Walwyn, S. Wood, F. Lorencatto, A. Farrin, S. Hartley, J. Francis, Valentine Seymour, J. Brehaut, H. Colquhoun, J. Grimshaw, N. Ivers, R. Feltbower, J. Keen, Benjamin C Brown, J. Presseau, C. Gale, S. Stanworth, R. Foy","doi":"10.3310/qbbz1124","DOIUrl":"https://doi.org/10.3310/qbbz1124","url":null,"abstract":"\u0000 \u0000 National clinical audit programmes aim to improve patient care by reviewing performance against explicit standards and directing action towards areas not meeting those standards. Their impact can be improved by (1) optimising feedback content and format, (2) strengthening audit cycles and (3) embedding randomised trials evaluating different ways of delivering feedback.\u0000 \u0000 \u0000 \u0000 The objectives were to (1) develop and evaluate the effects of modifications to feedback on recipient responses, (2) identify ways of strengthening feedback cycles for two national audits and (3) explore opportunities, costs and benefits of national audit participation in a programme of trials.\u0000 \u0000 \u0000 \u0000 An online fractional factorial screening experiment (objective 1) and qualitative interviews (objectives 2 and 3).\u0000 \u0000 \u0000 \u0000 Participants were clinicians and managers involved in five national clinical audits – the National Comparative Audit of Blood Transfusions, the Paediatric Intensive Care Audit Network, the Myocardial Ischaemia National Audit Project, the Trauma Audit & Research Network and the National Diabetes Audit – (objective 1); and clinicians, members of the public and researchers (objectives 2 and 3).\u0000 \u0000 \u0000 \u0000 We selected and developed six online feedback modifications through three rounds of user testing. We randomised participants to one of 32 combinations of the following recommended specific actions: comparators reinforcing desired behaviour change; multimodal feedback; minimised extraneous cognitive load for feedback recipients; short, actionable messages followed by optional detail; and incorporating ‘the patient voice’ (objective 1).\u0000 \u0000 \u0000 \u0000 The outcomes were intended actions, including enactment of audit standards (primary outcome), comprehension, user experience and engagement (objective 1).\u0000 \u0000 \u0000 \u0000 For objective 1, the primary analysis included 638 randomised participants, of whom 566 completed the outcome questionnaire. No modification independently increased intended enactment of audit standards. Minimised cognitive load improved comprehension (+0.1; p = 0.014) and plans to bring audit findings to colleagues’ attention (+0.13, on a –3 to +3 scale; p = 0.016). We observed important cumulative synergistic and antagonistic interactions between modifications, participant role and national audit. The analysis in objective 2 included 19 interviews assessing the Trauma Audit Research Network and the National Diabetes Audit. The identified ways of strengthening audit cycles included making performance data easier to understand and guiding action planning. The analysis in objective 3 identified four conditions for effective collaboration from 31 interviews: compromise – recognising capacity and constraints; logistics – enabling data sharing, audit quality and funding; leadership – engaging local stakeholders; and relationships – agreeing shared priorities and needs. The perceived benefits of collaboration outweighed the risks.\u0000 \u0000 \u0000 \u0000 The online experiment assessed ","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47075075","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Telephone triage is a service innovation in which every patient asking to see a general practitioner or other primary care professional calls the general practice and usually speaks to a receptionist first, who records a few details. The patient is then telephoned back by the general practitioner/primary care professional. At the end of this return telephone call with the general practitioner/primary care professional, either the issue is resolved or a face-to-face appointment is arranged. Before the COVID-19 pandemic, telephone triage was designed and used in the UK as a tool for managing demand and to help general practitioners organise their workload. During the first quarter of 2020, much of general practice moved to a remote (largely telephone) triage approach to reduce practice footfall and minimise the risk of COVID-19 contact for patients and staff. Ensuring equitable care for people living with multiple long-term health conditions (‘multimorbidity’) is a health policy priority. We aimed to evaluate whether or not the increased use of telephone triage would affect access to primary care differently for people living with multimorbidity than for other patients. We used data from the English GP Patient Survey to explore the inequalities impact of introducing telephone triage in 154 general practices in England between 2011 and 2017. We looked particularly at the time taken to see or speak to a general practitioner for people with multiple long-term health conditions compared with other patients before the COVID-19 pandemic. We also used data from Understanding Society, a nationally representative survey of households from the UK, to explore inequalities in access to primary care during the COVID-19 pandemic (between April and November 2020). Using data from before the COVID-19 pandemic, we found no evidence (p = 0.26) that the impact of a general practice moving to a telephone triage approach on the time taken to see or speak to a general practitioner was different for people with multimorbidity and for people without. During the COVID-19 pandemic, we found that people with multimorbidity were more likely than people with no long-term health conditions to have a problem for which they needed access to primary care. Among people who had a problem for which they would normally try to contact their general practitioner, there was no evidence of variation based on the number of conditions as to whether or not someone did try to contact their general practitioner; whether or not they were able to make an appointment; or whether they were offered a face-to-face, an online or an in-person appointment. Survey non-response, limitations of the specific survey measures of primary care access that were used, and being unable to fully explore the quality of the telephone triage and consultations were all limitations. These results highlight that, although people with multimorbidity have a greater ne
{"title":"Impact of telephone triage on access to primary care for people living with multiple long-term health conditions: rapid evaluation","authors":"C. Saunders, Evangelos Gkousis","doi":"10.3310/ucce5549","DOIUrl":"https://doi.org/10.3310/ucce5549","url":null,"abstract":"Telephone triage is a service innovation in which every patient asking to see a general practitioner or other primary care professional calls the general practice and usually speaks to a receptionist first, who records a few details. The patient is then telephoned back by the general practitioner/primary care professional. At the end of this return telephone call with the general practitioner/primary care professional, either the issue is resolved or a face-to-face appointment is arranged. Before the COVID-19 pandemic, telephone triage was designed and used in the UK as a tool for managing demand and to help general practitioners organise their workload. During the first quarter of 2020, much of general practice moved to a remote (largely telephone) triage approach to reduce practice footfall and minimise the risk of COVID-19 contact for patients and staff. Ensuring equitable care for people living with multiple long-term health conditions (‘multimorbidity’) is a health policy priority. We aimed to evaluate whether or not the increased use of telephone triage would affect access to primary care differently for people living with multimorbidity than for other patients. We used data from the English GP Patient Survey to explore the inequalities impact of introducing telephone triage in 154 general practices in England between 2011 and 2017. We looked particularly at the time taken to see or speak to a general practitioner for people with multiple long-term health conditions compared with other patients before the COVID-19 pandemic. We also used data from Understanding Society, a nationally representative survey of households from the UK, to explore inequalities in access to primary care during the COVID-19 pandemic (between April and November 2020). Using data from before the COVID-19 pandemic, we found no evidence (p = 0.26) that the impact of a general practice moving to a telephone triage approach on the time taken to see or speak to a general practitioner was different for people with multimorbidity and for people without. During the COVID-19 pandemic, we found that people with multimorbidity were more likely than people with no long-term health conditions to have a problem for which they needed access to primary care. Among people who had a problem for which they would normally try to contact their general practitioner, there was no evidence of variation based on the number of conditions as to whether or not someone did try to contact their general practitioner; whether or not they were able to make an appointment; or whether they were offered a face-to-face, an online or an in-person appointment. Survey non-response, limitations of the specific survey measures of primary care access that were used, and being unable to fully explore the quality of the telephone triage and consultations were all limitations. These results highlight that, although people with multimorbidity have a greater ne","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43709184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katie Featherstone, A. Northcott, P. Boddington, D. Edwards, S. Vougioukalou, S. Bale, K. Harrison Dening, K. Logan, R. Tope, D. Kelly, Aled Jones, Jackie Askey, Jane Harden
The acute hospital setting has become a key site of care for people living with dementia. People living with dementia are one of the largest populations in our hospitals, with the Department of Health and Social Care recognising that 25–50% of all acute hospital admissions are people who are also living with dementia. However, people living with dementia are a highly vulnerable group in the hospital setting and, following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to explore what constitutes ‘good care’. This study’s focus was a common, but poorly understood, aspect of everyday care for people living with dementia during an acute admission, that is continence care. We asked the following questions: what caring practices are observable when interacting with this patient group? How do ward teams respond to and manage continence needs? What informs these approaches? What are staff doing and why? This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to examine how ward staff responded to the continence care needs of people living with dementia and to follow the consequences of their actions. We carried out a mixed-methods systematic narrative review to refine our approach to fieldwork and analysis. This ethnography was carried out for 180 days, across 12 months, in six wards in three hospitals across England and Wales that were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments. In addition to general observations, 108 individuals participated directly in this study, contributing to 562 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. This study identified ‘pad cultures’ as an embedded practice on these acute wards. The routine use of continence pads among people living with dementia (regardless of continence and independence) was widespread. The use of continence pads was viewed as a precautionary strategy, the rationale being to provide safeguards, ensure containment and prevent ‘accidents’ or incontinence episodes, with an expectation that patients living with dementia not only will wear pads, but will use them. These ‘pad cultures’ enabled the number of unscheduled interruptions to the institutionally mandated timetabled work of these wards to be reduced, but had significant impacts on people living with dementia and, in turn, wider consequences for these individuals and their identities. Ward staff described feeling abandoned with the responsibility of caring for large numbers of people living with dementia, believing that it was impossible to work in other ways to support their patient’s continence. The limitations identified included the pot
{"title":"Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study","authors":"Katie Featherstone, A. Northcott, P. Boddington, D. Edwards, S. Vougioukalou, S. Bale, K. Harrison Dening, K. Logan, R. Tope, D. Kelly, Aled Jones, Jackie Askey, Jane Harden","doi":"10.3310/quvv2680","DOIUrl":"https://doi.org/10.3310/quvv2680","url":null,"abstract":"\u0000 \u0000 The acute hospital setting has become a key site of care for people living with dementia. People living with dementia are one of the largest populations in our hospitals, with the Department of Health and Social Care recognising that 25–50% of all acute hospital admissions are people who are also living with dementia. However, people living with dementia are a highly vulnerable group in the hospital setting and, following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to explore what constitutes ‘good care’.\u0000 \u0000 \u0000 \u0000 This study’s focus was a common, but poorly understood, aspect of everyday care for people living with dementia during an acute admission, that is continence care. We asked the following questions: what caring practices are observable when interacting with this patient group? How do ward teams respond to and manage continence needs? What informs these approaches? What are staff doing and why?\u0000 \u0000 \u0000 \u0000 This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to examine how ward staff responded to the continence care needs of people living with dementia and to follow the consequences of their actions. We carried out a mixed-methods systematic narrative review to refine our approach to fieldwork and analysis.\u0000 \u0000 \u0000 \u0000 This ethnography was carried out for 180 days, across 12 months, in six wards in three hospitals across England and Wales that were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments.\u0000 \u0000 \u0000 \u0000 In addition to general observations, 108 individuals participated directly in this study, contributing to 562 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia.\u0000 \u0000 \u0000 \u0000 This study identified ‘pad cultures’ as an embedded practice on these acute wards. The routine use of continence pads among people living with dementia (regardless of continence and independence) was widespread. The use of continence pads was viewed as a precautionary strategy, the rationale being to provide safeguards, ensure containment and prevent ‘accidents’ or incontinence episodes, with an expectation that patients living with dementia not only will wear pads, but will use them.\u0000 \u0000 \u0000 \u0000 These ‘pad cultures’ enabled the number of unscheduled interruptions to the institutionally mandated timetabled work of these wards to be reduced, but had significant impacts on people living with dementia and, in turn, wider consequences for these individuals and their identities. Ward staff described feeling abandoned with the responsibility of caring for large numbers of people living with dementia, believing that it was impossible to work in other ways to support their patient’s continence.\u0000 \u0000 \u0000 \u0000 The limitations identified included the pot","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44555784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
K. Oulton, J. Wray, C. Kenten, Jessica Russell, L. Carr, A. Hassiotis, C. Jewitt, P. Kelly, S. Kerry, I. Tuffrey‐Wijne, M. Whiting, F. Gibson
To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact
{"title":"Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study","authors":"K. Oulton, J. Wray, C. Kenten, Jessica Russell, L. Carr, A. Hassiotis, C. Jewitt, P. Kelly, S. Kerry, I. Tuffrey‐Wijne, M. Whiting, F. Gibson","doi":"10.3310/nwkt5206","DOIUrl":"https://doi.org/10.3310/nwkt5206","url":null,"abstract":"\u0000 \u0000 To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature.\u0000 \u0000 \u0000 \u0000 To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts.\u0000 \u0000 \u0000 \u0000 A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff.\u0000 \u0000 \u0000 \u0000 Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings.\u0000 \u0000 \u0000 \u0000 A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics.\u0000 \u0000 \u0000 \u0000 Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set.\u0000 \u0000 \u0000 \u0000 Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact ","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"69497464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mild cognitive impairment in older adults is a risk factor for dementia. Mild cognitive impairment is a result of a diverse range of underlying causes and may progress to dementia, remain stable or improve over time. We aimed to assess the evidence base around the assessment and management pathway of older adults with mild cognitive impairment in community/primary care, hospital and residential settings. In January 2021, we searched MEDLINE, EMBASE, PsycInfo®, Scopus, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library (i.e. Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials), Science Citation Index and Social Science Citation Index. The search was limited to studies published in English between 2010 and 2020. Grey literature and citation searches were also performed. We performed two separate evidence reviews: (1) a descriptive review with narrative synthesis focusing on diagnosis, service provision and patient experience; and (2) a critical interpretive synthesis of evidence on the advantages and disadvantages of ‘mild cognitive impairment’ as a diagnostic label. A total of 122 studies were included in the descriptive review, of which 29 were also included in the critical interpretive synthesis. Study participants were most commonly recruited from populations of community-living older adults or those who had sought medical help from their general practitioner for memory problems. Follow-up searching identified a further 11 studies for the critical interpretive synthesis. The descriptive review identified multiple barriers to efficient diagnosis, starting with patient reluctance to seek help. General practitioners have a variety of cognitive tests available, but substantial numbers of patients meeting criteria for dementia do not have a diagnosis recorded. Patients may be referred to a memory clinic, but these clinics are mainly intended to identify and support people with dementia, and people with mild cognitive impairment may be discharged back to their general practitioner until symptoms worsen. Availability of scanning and biomarker tests is patchy. Qualitative studies show that patients with mild cognitive impairment and their carers find the process of investigation and diagnosis difficult and frustrating to negotiate. The key finding from the critical interpretive synthesis was that the need for a ‘timely’ diagnosis outweighs the ongoing debate about the value, or otherwise, of early investigation and labelling of memory problems. Determining what is a timely diagnosis involves balancing the perspectives of the patient, the health system and the clinician. The two reviews reported here have applied different ‘lenses’ to the same body of evidence. Taken together, the reviews highlight the importance of a timely diagnosis for memory problems and identify barriers to obtaining such a diagnosis, from reluctance to seek help through to pat
{"title":"Assessment and management pathways of older adults with mild cognitive impairment: descriptive review and critical interpretive synthesis","authors":"D. Chambers, A. Cantrell, K. Sworn, A. Booth","doi":"10.3310/xluj6074","DOIUrl":"https://doi.org/10.3310/xluj6074","url":null,"abstract":"\u0000 \u0000 Mild cognitive impairment in older adults is a risk factor for dementia. Mild cognitive impairment is a result of a diverse range of underlying causes and may progress to dementia, remain stable or improve over time.\u0000 \u0000 \u0000 \u0000 We aimed to assess the evidence base around the assessment and management pathway of older adults with mild cognitive impairment in community/primary care, hospital and residential settings.\u0000 \u0000 \u0000 \u0000 In January 2021, we searched MEDLINE, EMBASE, PsycInfo®, Scopus, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library (i.e. Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials), Science Citation Index and Social Science Citation Index. The search was limited to studies published in English between 2010 and 2020. Grey literature and citation searches were also performed.\u0000 \u0000 \u0000 \u0000 We performed two separate evidence reviews: (1) a descriptive review with narrative synthesis focusing on diagnosis, service provision and patient experience; and (2) a critical interpretive synthesis of evidence on the advantages and disadvantages of ‘mild cognitive impairment’ as a diagnostic label.\u0000 \u0000 \u0000 \u0000 A total of 122 studies were included in the descriptive review, of which 29 were also included in the critical interpretive synthesis. Study participants were most commonly recruited from populations of community-living older adults or those who had sought medical help from their general practitioner for memory problems. Follow-up searching identified a further 11 studies for the critical interpretive synthesis. The descriptive review identified multiple barriers to efficient diagnosis, starting with patient reluctance to seek help. General practitioners have a variety of cognitive tests available, but substantial numbers of patients meeting criteria for dementia do not have a diagnosis recorded. Patients may be referred to a memory clinic, but these clinics are mainly intended to identify and support people with dementia, and people with mild cognitive impairment may be discharged back to their general practitioner until symptoms worsen. Availability of scanning and biomarker tests is patchy. Qualitative studies show that patients with mild cognitive impairment and their carers find the process of investigation and diagnosis difficult and frustrating to negotiate. The key finding from the critical interpretive synthesis was that the need for a ‘timely’ diagnosis outweighs the ongoing debate about the value, or otherwise, of early investigation and labelling of memory problems. Determining what is a timely diagnosis involves balancing the perspectives of the patient, the health system and the clinician.\u0000 \u0000 \u0000 \u0000 The two reviews reported here have applied different ‘lenses’ to the same body of evidence. Taken together, the reviews highlight the importance of a timely diagnosis for memory problems and identify barriers to obtaining such a diagnosis, from reluctance to seek help through to pat","PeriodicalId":73204,"journal":{"name":"Health and social care delivery research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44362927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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