Activity interventions to improve the experience of care in hospital for people living with dementia: a systematic review.

BACKGROUND: An increasingly high number of patients admitted to hospital have dementia. Hospital environments can be particularly confusing and challenging for people living with dementia (Plwd) impacting their wellbeing and the ability to optimize their care. Improving the experience of care in hospital has been recognized as a priority, and non-pharmacological interventions including activity interventions have been associated with improved wellbeing and behavioral outcomes for Plwd in other settings. This systematic review aimed at evaluating the effectiveness of activity interventions to improve experience of care for Plwd in hospital. METHODS: Systematic searches were conducted in 16 electronic databases up to October 2019. Reference lists of included studies and forward citation searching were also conducted. Quantitative studies reporting comparative data for activity interventions delivered to Plwd aiming to improve their experience of care in hospital were included. Screening for inclusion, data extraction and quality appraisal were performed independently by two reviewers with discrepancies resolved by discussion with a third where necessary. Standardized mean differences (SMDs) were calculated where possible to support narrative statements and aid interpretation. RESULTS: Six studies met the inclusion criteria (one randomized and five non-randomized uncontrolled studies) including 216 Plwd. Activity interventions evaluated music, art, social, psychotherapeutic, and combinations of tailored activities in relation to wellbeing outcomes. Although studies were generally underpowered, findings indicated beneficial effects of activity interventions with improved mood and engagement of Plwd while in hospital, and reduced levels of responsive behaviors. Calculated SMDs ranged from very small to large but were mostly statistically non-significant. CONCLUSIONS: The small number of identified studies indicate that activity-based interventions implemented in hospitals may be effective in improving aspects of the care experience for Plwd. Larger well-conducted studies are needed to fully evaluate the potential of this type of non-pharmacological intervention to improve experience of care in hospital settings, and whether any benefits extend to staff wellbeing and the wider ward environment.

Refining a model of collaborative care for people with a diagnosis of bipolar, schizophrenia or other psychoses in England: a qualitative formative evaluation.

BACKGROUND: Many people diagnosed with schizophrenia, bipolar or other psychoses in England receive the majority of their healthcare from primary care. Primary care practitioners may not be well equipped to meet their needs and there is often poor communication with secondary care. Collaborative care is a promising alternative model but has not been trialled specifically with this service user group in England. Collaborative care for other mental health conditions has not been widely implemented despite evidence of its effectiveness. We carried out a formative evaluation of the PARTNERS model of collaborative care, with the aim of establishing barriers and facilitators to delivery, identifying implementation support requirements and testing the initial programme theory. METHODS: The PARTNERS intervention was delivered on a small scale in three sites. Qualitative data was collected from primary and secondary care practitioners, service users and family carers, using semi-structured interviews, session recordings and tape-assisted recall. Deductive and inductive thematic analysis was carried out; themes were compared to the programme theory and used to inform an implementation support strategy. RESULTS: Key components of the intervention that were not consistently delivered as intended were: interaction with primary care teams, the use of coaching, and supervision. Barriers and facilitators identified were related to service commitment, care partner skills, supervisor understanding and service user motivation. An implementation support strategy was developed, with researcher facilitation of communication and supervision and additional training for practitioners. Some components of the intervention were not experienced as intended; this appeared to reflect difficulties with operationalising the intervention. Analysis of data relating to the intended outcomes of the intervention indicated that the mechanisms proposed in the programme theory had operated as expected. CONCLUSIONS: Additional implementation support is likely to be required for the PARTNERS model to be delivered; the effectiveness of such support may be affected by practitioner and service user readiness to change. There is also a need to test the programme theory more fully. These issues will be addressed in the process evaluation of our full trial. TRIAL REGISTRATION: ISRCTN95702682 , 26 October 2017.

End-user involvement in a systematic review of quantitative and qualitative research of non-pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges.

BACKGROUND: The benefits of end-user involvement in health-care research are widely recognized by research agencies. There are few published evaluations of end-user involvement in systematic reviews. OBJECTIVES: (i) Describe end-user involvement in a complex mixed-methods systematic review of ADHD in schools, (ii) reflect on the impact of end-user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement. METHODS: End-users were involved in all stages of the project, both as authors and as members of an advisory group. In addition, several events were held with groups of relevant end-users during the project. RESULTS: End-user input (i) guided the direction of the research, (ii) contributed to a typology of interventions and outcomes, (iii) contributed to the direction of data analysis and (iv) contributed to the robustness of the syntheses by demonstrating the alignment of interim findings with lived experiences. Challenges included (i) managing expectations, (ii) managing the intensity of emotion, (iii) ensuring that involvement was fruitful for all not just the researcher, (iv) our capacity to communicate and manage the process and (v) engendering a sense of involvement amongst end-users. CONCLUSIONS: End-user involvement was an important aspect of this project. To minimize challenges in future projects, a recognition by the project management team and the funding provider that end-user involvement even in evidence synthesis projects is resource intensive is essential to allow appropriate allocation of time and resources for meaningful engagement.

Evaluation of a primary care-based collaborative care model (PARTNERS2) for people with diagnoses of schizophrenia, bipolar, or other psychoses: study protocol for a cluster randomised controlled trial.

BACKGROUND: Current NHS policy encourages an integrated approach to provision of mental and physical care for individuals with long term mental health problems. The 'PARTNERS2' complex intervention is designed to support individuals with psychosis in a primary care setting. AIM: The trial will evaluate the clinical and cost-effectiveness of the PARTNERS2 intervention. DESIGN & SETTING: This is a cluster randomised controlled superiority trial comparing collaborative care (PARTNERS2) with usual care, with an internal pilot to assess feasibility. The setting will be primary care within four trial recruitment areas: Birmingham & Solihull, Cornwall, Plymouth, and Somerset. GP practices are randomised 1:1 to either (a) the PARTNERS2 intervention plus modified standard care ('intervention'); or (b) standard care only ('control'). METHOD: PARTNERS2 is a flexible, general practice-based, person-centred, coaching-based intervention aimed at addressing mental health, physical health, and social care needs. Two hundred eligible individuals from 39 GP practices are taking part. They were recruited through identification from secondary and primary care databases. The primary hypothesis is quality of life (QOL). Secondary outcomes include: mental wellbeing, time use, recovery, and process of physical care. A process evaluation will assess fidelity of intervention delivery, test hypothesised mechanisms of action, and look for unintended consequences. An economic evaluation will estimate its cost-effectiveness. Intervention delivery and follow-up have been modified during the COVID-19 pandemic. CONCLUSION: The overarching aim is to establish the clinical and cost-effectiveness of the model for adults with a diagnosis of schizophrenia, bipolar, or other types of psychoses.

Are they just lazy? Student teachers' attitudes about dyslexia.

It is highly likely that teachers' abilities in dealing with different forms of learning difficulties will be affected by their knowledge about and attitudes towards those difficulties. Ajzen's Theory of Planned Behaviour (TPB) provides a useful framework within which to explore such attitudes and was used as the starting point for investigating trainee teachers' attitudes towards aspects of dyslexia. It is assumed that new teachers will enter the profession with a set of intentions according to personal beliefs, normative views within the teaching profession and the sense of competence and power they feel in dealing with dyslexic difficulties. The purpose of this study was to probe student teachers' attitudes at a prestigious School of Education in the Southwest of England. Four hundred and eight primary and secondary Post Graduate Certificate in Education (PGCE) students responded to a survey asking about their attitudes toward dyslexia. The student teachers expressed strongly positive attitudes toward the construct of dyslexia, with the majority expressing confidence in their ability to support dyslexic pupils. Females held significantly more positive attitudes toward dyslexia than males, but there were no significant differences according to PGCE course subject. Students who took the survey before and after teaching practice demonstrated some small but significant changes in attitude scores over that time. It is proposed that a new breed of teachers may be entering the teaching profession with positive beliefs about their ability to help dyslexic pupils, but who remain unclear as to how this can be accomplished. Some implications for action and suggestions for future research are provided.

Developing methods for the overarching synthesis of quantitative and qualitative evidence: The interweave synthesis approach.

The incorporation of evidence derived from multiple research designs into one single synthesis can enhance the utility of systematic reviews making them more worthwhile, useful, and insightful. Methodological guidance for mixed-methods synthesis continues to emerge and evolve but broadly involves a sequential, parallel, or convergent approach according to the degree of independence between individual syntheses before they are combined. We present two case studies in which we used novel and innovative methods to draw together the findings from individual but related quantitative and qualitative syntheses to aid interpretation of the overall evidence base. Our approach moved beyond making a choice between parallel, sequential, or convergent methods to interweave the findings of individual reviews and offers three key innovations to mixed-methods synthesis methods: The use of intersubjective questions to understand the findings of the individual reviews through different lenses, Immersion of key reviewers in the entirety of the evidence base, and Commencing the process during the final stages of the synthesis of individual reviews, at a point where reviewers are developing an understanding of initial findings. Underlying our approach is the process of exploration and identification of links between and across review findings, an approach that is fundamental to all evidence syntheses but usually occurs at the level of the study. Adapting existing methods for exploring and identifying patterns and links between and across studies to interweave the findings between and across reviews may prove valuable.

The experiences of hospital staff who provide care for people living with dementia: A systematic review and synthesis of qualitative studies.

AIMS AND OBJECTIVES: To systematically review and synthesise qualitative data from studies exploring the experiences of hospital staff who care for people living with dementia (Plwd). BACKGROUND: In hospital, the number of Plwd continues to rise; however, their experiences of care remain problematic. Negative experiences of care are likely to contribute to poorer mental and physical health outcomes for Plwd while in hospital and after discharge. Experiences of the hospital staff who care for Plwd can also be poor or unrewarding. It is important to understand the experiences of staff in order to improve staff well-being and ultimately the experience of care for Plwd while in hospital. DESIGN: Systematic review and evidence synthesis of qualitative research. DATA SOURCES: We searched 16 electronic databases in March 2018 and completed forward and backward citation chasing. METHODS: Eligible studies explored the experiences of paid and unpaid staff providing care in hospital for Plwd. Study selection was undertaken independently by two reviewers, and quality appraisal was conducted. We prioritised included studies according to richness of text, methodological rigour and conceptual contribution. We adopted approaches of meta-ethnography to analyse study findings, creating a conceptual model to represent the line of argument. FINDINGS: Forty-five studies reported in 58 papers met the inclusion criteria, and of these, we prioritised 19 studies reported in 24 papers. The line of argument was that Institutions can improve staff experiences of care for Plwd by fostering person-centred care (PCC). PCC aligned with staff perceptions of 'good care'; however, staff often felt prevented from providing PCC because of care cultures that prioritised tasks, routines and physical health. Staff experienced conflict over the care they wanted to give versus the care they were able to give, and this caused moral distress. When staff were able to provide PCC, this increased experiences of job satisfaction and emotional well-being. CONCLUSIONS: Person-centred care not only has the potential to improve the experience of care for Plwd and their carers, but can also improve the experiences of hospital staff caring for Plwd. However, without institutional-level changes, hospital staff are often unable to provide PCC even when they have the experience and knowledge to do so. IMPLICATIONS FOR PRACTICE: Institutional-level areas for change include the following: training; performance indicators and ward cultures that prioritise psychological needs alongside physical needs; adequate staffing levels; inclusive approaches to carers; physical environments that promote familiarisation, social interaction and occupation; systems of documentation about individual needs of Plwd; and cultures of sharing knowledge across hierarchies.

Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study.

Background: Autism has been associated with specific cognitive strengths. Strengths and weaknesses have traditionally been conceptualized as dichotomous. Methods: We conducted 28 semi-structured interviews with autistic adults. Maximum variation sampling was used to ensure diversity in relation to support needs. We asked which personal traits adults attributed to their autism, and how these have helped in the workplace, in relationships, and beyond. Data were collected in two stages. Responses were analyzed using content and thematic techniques. Results: The ability to hyperfocus, attention to detail, good memory, and creativity were the most frequently described traits. Participants also described specific qualities relating to social interaction, such as honesty, loyalty, and empathy for animals or for other autistic people. In thematic analysis we found that traits associated with autism could be experienced either as advantageous or disadvantageous dependent on moderating influences. Moderating influences included the social context in which behaviors occurred, the ability to control behaviors, and the extent to which traits were expressed. Conclusions: Separating autistic strengths from weaknesses may be a false dichotomy if traits cannot be isolated as separate constructs of strengths or deficits. If attempts to isolate problematic traits from advantageous traits are ill conceived, there may be implications for interventions that have reduction in autistic traits as a primary outcome measure. LAY SUMMARY: Why was this study done?: The study was done to find out what autistic adults could tell us about their own abilities. They told us about their abilities and how these abilities had helped them in their everyday lives: at work, in their relationships with other people, and at home.What was the purpose of this study?: To tell a story about what aspects of their autism adults thought were of benefit, when going about their daily lives.What did the researchers do?: The researchers interviewed 24 adults who had an autism diagnosis. Some lived in residential care and others lived alone in rented apartments. Some people were interviewed twice. Most people said they enjoyed the experience of being interviewed.Once the interviews were done, they were typed up and the researchers tried to figure out what were the common themes over all the stories they had heard. They thought about the themes, then did some more interviews with autistic adults to check they were on the right lines. After discussing them, they wrote the story.What were the results of the study?: Hyper focus, attention to detail, and the ability to remember were the abilities that autistic people said benefitted them most often. But autistic adults who were interviewed said although their autistic traits were sometimes helpful, at other times they hindered their progress. So the same trait might be useful in some circumstances and unhelpful in other situations. For example, hypersensitivity led one person to enjoy nature, but was difficult to cope with in crowded streets. The study highlights this interchangeability.What do these findings add to what was already known?: Before, autistic people were known to have both strengths and challenges, but studies tended to separate autistic strengths and weaknesses as different things. We theorize that some traits are expressed as behaviors that may serve to improve or hinder autistic people's progress, but this depends on their situation (context).What are potential weaknesses in the study?: Because the researchers used interviews, they did not include any nonverbal autistic people in the study.How will these findings help autistic adults now or in the future?: It could be useful to think about autism in a way that does not focus on deficits and this study will help us to do that. Plus, if an autistic trait can give people an advantage or a disadvantage, interventions aimed at reducing autistic behaviors might risk dampening advantageous traits as they seek to help with difficulties. That means, autistic adults and children might lose useful abilities when and if they are treated for traits that can also be problematic. The researchers hope their study will lead to more discussion about these types of ideas.

Non-Pharmacological Interventions for ADHD in School Settings: An Overarching Synthesis of Systematic Reviews.

OBJECTIVE: This overarching synthesis brings together the findings of four systematic reviews including 138 studies focused on non-pharmacological interventions for ADHD used in school settings. These reviews considered the effectiveness of school-based interventions for ADHD, attitudes toward and experience of school-based interventions for ADHD, and the experience of ADHD in school settings. METHOD: We developed novel methods to compare the findings across these reviews inductively and deductively. RESULTS: Key contextual issues that may influence the effectiveness and implementation of interventions include the relationships that pupils with ADHD have with their teachers and peers, the attributions individuals make about the etiology of ADHD, and stigma related to ADHD or intervention attendance. CONCLUSION: Although we found some positive effects for some outcomes and intervention categories, heterogeneity in effect size estimates and research evidence suggests a range of diverse contextual factors potentially moderate the implementation and effectiveness of school-based interventions for ADHD.

Non-pharmacological interventions for attention-deficit/hyperactivity disorder (ADHD) delivered in school settings: systematic reviews of quantitative and qualitative research.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by age-inappropriate levels of inattention, impulsivity and hyperactivity. School can be particularly challenging for children with ADHD. Few reviews have considered non-pharmacological interventions in school settings. OBJECTIVES: To assess the effectiveness of non-pharmacological interventions delivered in school settings for pupils with, or at risk of, ADHD and to explore the factors that may enhance, or limit, their delivery. DATA SOURCES: Twenty electronic databases (including PsycINFO, MEDLINE, EMBASE, Education Resources Information Centre, The Cochrane Library and Education Research Complete) were searched from 1980 to February-August 2013. Three separate searches were conducted for four systematic reviews; they were supplemented with forward and backwards citation chasing, website searching, author recommendations and hand-searches of key journals. REVIEW METHODS: The systematic reviews focused on (1) the effectiveness of school-based interventions for children with or at risk of ADHD; (2) quantitative research that explores attitudes towards school-based non-pharmacological interventions for pupils with ADHD; (3) qualitative research investigating the attitudes and experiences of children, teachers, parents and others using ADHD interventions in school settings; and (4) qualitative research exploring the experience of ADHD in school among pupils, their parents and teachers more generally. Methods of synthesis included a random-effects meta-analysis, meta-regression and narrative synthesis for review 1, narrative synthesis for review 2 and meta-ethnography and thematic analysis for reviews 3 and 4. RESULTS: For review 1, 54 controlled trials met the inclusion criteria. For the 36 meta-analysed randomised controlled trials, beneficial effects (p < 0.05) were observed for several symptom and scholastic outcomes. Mean weighted effect sizes ranged from very small (d + < 0.20) to large (d + ≥ 0.80), but substantial heterogeneity in effect size estimates across studies was reported. Moderator analyses were not able to clarify which intervention features were linked with effectiveness. For review 2, 28 included studies revealed that educators' attitudes towards interventions ranged in positivity. Most interventions were rated positively or neutrally across different studies. The only intervention that consistently recorded positive attitudes from educators was daily report cards. For review 3, 33 studies met the inclusion criteria. Key findings included tensions regarding the preferred format of interventions, particularly how structured interventions were and the extent to which they are tailored to the child with ADHD. There were mixed views about the impact of interventions, although it was clear that interventions both influence and are influenced by the relationships held by children with ADHD and participants' attitudes towards school and ADHD. For review 4, 34 studies met the inclusion criteria. Key findings included the importance of causal attributions that teachers, parents and pupils made about ADHD symptoms, the decisions teachers made about treatment, the self-perceptions pupils developed about themselves, the role of the classroom environment and stigma in aggravating ADHD symptoms, and the significant barrier to treatment posed by the common presence of conflict in relationships between pupils-teachers, parents-teachers and pupils-peers in relation to ADHD. An overarching synthesis of the four reviews highlighted the importance of the context affecting interventions. It suggested that ADHD psychoeducation and relationship-building skills are potential implications for interventions. LIMITATIONS: The breadth of both interventions and outcomes in the reviewed studies presented a challenge for categorisation, analysis and interpretation in reviews 1-3. Across reviews, relatively few studies were conducted in the UK, limiting the applicability of findings to UK education. In reviews 1 and 2, the poor methodological quality of some included studies was identified as a barrier to establishing effectiveness or comparing attitudes. In review 3 the descriptive analysis used by the majority of studies constrained theorising during synthesis. Studies in review 4 lacked detail regarding important issues like gender, pupil maturity and school level. CONCLUSION: Findings suggest some beneficial effects of non-pharmacological interventions for ADHD used in school settings, but substantial heterogeneity in effect sizes was seen across studies. The qualitative reviews demonstrate the importance of the context in which interventions are used. Future work should consider more rigorous evaluation of interventions, as well as focus on what works, for whom and in which contexts. Gaps in current research present opportunities for the development and testing of standardised tools to describe interventions, agreement on gold-standard outcome measures assessing ADHD behaviour and testing a range of potential moderators alongside intervention trials. STUDY REGISTRATION: This study is registered as PROSPERO CRD42011001716. FUNDING: The National Institute for Health Research Health Technology Assessment programme.