Education-based interventions for informal carers of people with dementia: a meta-analysis. PROSPERO 2014 CRD42014014606

A summary of key features from an updated meta-analysis protocol registered with PROSPERO International prospective register of systematic reviews

Psychoeducational interventions for informal caregivers of people with dementia: a systematic review

A summary of key features from a systematic review protocol registered in PROSPERO International prospective register of systematic reviews

Patient, carer, and staff perceptions of robotics in motor rehabilitation: a systematic review and qualitative meta‑synthesis.

Background: In recent years, robotic rehabilitation devices have often been used for motor training. However, to date, no systematic reviews of qualitative studies exploring the end-user experiences of robotic devices in motor rehabilitation have been published. The aim of this study was to review end-users’ (patients, carers and healthcare professionals) experiences with robotic devices in motor rehabilitation, by conducting a systematic review and thematic meta-synthesis of qualitative studies concerning the users’ experiences with such robotic devices. Methods: Qualitative studies and mixed-methods studies with a qualitative element were eligible for inclusion. Nine electronic databases were searched from inception to August 2020, supplemented with internet searches and forward and backward citation tracking from the included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The CASP Qualitative Checklist was used to assess the quality of the included studies of this review. Results: The search strategy identified a total of 13,556 citations and after removing duplicates and excluding citations based on title and abstract, and full text screening, 30 studies were included. All studies were considered of acceptable quality. We developed six analytical themes: logistic barriers; technological challenges; appeal and engagement; supportive interactions and relationships; benefits for physical, psychological, and social function(ing); and expanding and sustaining therapeutic options. Conclusions: Despite experiencing technological and logistic challenges, participants found robotic devices acceptable, useful and beneficial (physically, psychologically, and socially), as well as fun and interesting. Having supportive relationships with significant others and positive therapeutic relationships with healthcare staff were considered the foundation for successful rehabilitation and recovery

Patient-reported symptoms and experience following Guillain-Barré syndrome and related conditions: Questionnaire development and validation

Background: Guillain-Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences. Objective: We aimed to develop and validate an instrument to measure experiences of people with GBS. Design: We used a cross-sectional design and online self-administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery. Setting and Participants: People with a previous diagnosis of GBS were recruited through a social media advert. Results: A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance. Conclusion: The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS. Patient Contribution: Patients were involved in developing and piloting the questionnaire

Patient, carer and staff perceptions of robotics in rehabilitation: protocol of a systematic review and qualitative meta-synthesis

Registration of a systematic review and qualitative meta-synthesis protocol

Caregivers’ interactions with health care services: mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia: a qualitative study

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals (HCPs) in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 HCPs. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from HCPs; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for HCPs and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient

Wellbeing in Volunteers on Heritage at Risk Projects.

The Heritage at Risk and Wellbeing (HARAW) project aimed to explore the relationship between wellbeing and volunteering in completed Heritage at Risk (HAR) projects, in order to build capacity for future HAR projects to support wellbeing in volunteers more effectively and more widely. This report details the context, aims, methods, results, discussion and conclusions presented in the report, with the relevant section numbers in the main body of this report given

Exploring the experiences of having Guillain‐Barré Syndrome: A qualitative interview study

Background: Guillain-Barré syndrome (GBS) is a rare inflammatory disorder affecting the peripheral nerves. Although typically there is full neurological recovery, some people continue to experience residual physical, psychological or social problems longer term. Evidence describing the experiences of people with GBS is limited. Objective: We aimed to explore the experiences of people with GBS in the UK. Design: We used qualitative (face-to-face and telephone) interviews to explore experiences of people with GBS. Audio-recorded data were transcribed verbatim and analysed using the Framework Method supported by NVivo 11. Setting and Participants: We purposively recruited a sample of 16 volunteers with a prior diagnosis of GBS of varying age, sex, ethnicity, location, marital status, time since diagnosis and length of hospital stay to maximize differences in experience. Interviewees were required to have been discharged from hospital, able to give informed consent, able to speak and understand English and currently resident in the United Kingdom. Results: The key themes arising from the analysis were as follows: the importance of early diagnosis; the experiences of inpatient care; the importance of active support for recovery; the need for communication throughout the course of the illness; the need for greater awareness, knowledge and provision of information by health-care staff; and path to achieving function. Conclusion: This is the first qualitative study exploring experiences of people with GBS in the UK through their whole illness journey from onset to recovery. The findings contribute to our understanding of the experiences and support needs of people recovering from GBS

Emergency medical service interventions and experiences during pandemics: A scoping review.

The global impact of COVID-19 has been profound, with efforts to manage and contain the virus placing increased pressure on healthcare systems and Emergency Medical Services (EMS) in particular. There has been no previous review of studies investigating EMS interventions or experiences during pandemics. The aim of this scoping review was to identify and present published quantitative and qualitative evidence of EMS pandemic interventions, and how this translates into practice. Six electronic databases were searched from inception to July 2022, supplemented with internet searches and forward and backward citation tracking from included studies and review articles. A narrative synthesis of all eligible quantitative studies was performed and structured around the aims, key findings, as well as intervention type and content, where appropriate. Data from the qualitative studies were also synthesised narratively and presented thematically, according to their main aims and key findings. The search strategy identified a total of 22,599 citations and after removing duplicates and excluding citations based on title and abstract, and full text screening, 90 studies were included. The quantitative narrative synthesis included seven overarching themes, describing EMS pandemic preparedness plans and interventions implemented in response to pandemics. The qualitative data synthesis included five themes, detailing the EMS workers' experiences of providing care during pandemics, their needs and their suggestions for best practices moving forward. Despite concerns for their own and their families' safety and the many challenges they are faced with, especially their knowledge, training, lack of appropriate Personal Protective Equipment (PPE) and constant protocol changes, EMS personnel were willing and prepared to report for duty during pandemics. Participants also made recommendations for future outbreak response, which should be taken into consideration in order for EMS to cope with the current pandemic and to better prepare to respond to any future ones. The review protocol was registered with the Open Science Framework (osf.io/2pcy7)

Effectiveness of non-pharmacological interventions for insomnia in children with Autism Spectrum Disorder: A systematic review and meta-analysis

Background Autism spectrum disorders (ASD) are a set of neurodevelopmental disorders characterised by behavioural, communication and social impairments. The prevalence of sleep disturbances in children with ASD is 40–80%, with significant effects on quality of life for the children and carers. This systematic review aimed to synthesise evidence of the effects of behavioural interventions to improve sleep among children with ASD. Methods Databases (MEDLINE, PsycINFO, CINAHL, ScienceDirect, Autism Data, CENTRAL, ClinicalTrials.gov and Current Controlled Trials) were searched for published, unpublished and ongoing randomised controlled trials evaluating the effect of non-pharmacological interventions for insomnia in children with autism spectrum conditions. Results Three studies met the inclusion criteria, one provided actigraphy data, one Children’s Sleep Habits Questionnaire (CSHQ) data, and one both actigraphy and CSHQ data for use in meta-analyses. There were significant differences between the behavioural intervention and comparison groups (actigraphy data) for total sleep time (24.41 minutes, 95% CI 5.71, 43.11, P = 0.01), sleep latency (-18.31 minutes, 95% CI -30.84, -5.77, P = 0.004) and sleep efficiency (5.59%, 95% CI 0.87, 10.31, P = 0.02). There was also a favourable intervention effect evident for the subjective CSHQ data (-4.71, 95% CI -6.70, -2.73, P<0.00001). Risk of bias was low across several key domains (randomisation, allocation concealment and reporting), with some studies being unclear due to poor reporting. Conclusions There are very few high quality randomised controlled trials in this area. Here we provide initial synthesised quantitative evidence of the effectiveness of behavioural interventions for treating sleep problems in children with ASD. Trial registration Protocol was registered (CRD42017081784) on the International Prospective Register of Systematic Reviews (http://www.crd.york.ac.uk/PROSPERO)