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 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 healthcare professionals. 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 healthcare professionals; 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 healthcare professionals 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.

BackgroundWe sought to understand the main ethical considerations when conducting clinical trials in the prehospital ambulance based setting.MethodsA systematic review of the literature on randomised controlled trials in ambulance settings was undertaken. A search of eight databases identified published studies involving recruitment of ambulance service users. Four independent authors undertook abstract and full-text reviews to determine eligibility and extract relevant data. The data extraction concentrated on ethical considerations, with any discussion of ethics being included for further analysis. The resultant data were combined to form a narrative synthesis.ResultsIn all, 56 papers were identified as meeting the inclusion criteria. Issues relating to consent were the most significant theme identified. Type of consent differed depending on the condition or intervention being studied. The country in which the research took place did not appear to influence the type of consent, apart from the USA where exception from consent appeared to be most commonly used. A wide range of terms were used to describe consent.ConclusionsConsent was the main ethical consideration in published ambulance based research. A range of consent models were used ranging from informed consent to exception from consent (waiver of consent). Many studies cited international guidelines as informing their choice of consent model but diverse and sometimes confused terms were used to describe these models. This suggests that standardisation of consent models and the terminology used to describe them is warranted.Electronic supplementary materialThe online version of this article (10.1186/s12874-017-0423-4) contains supplementary material, which is available to authorized users.

Background the perceptions and experiences of care home residents and their families are important for understanding and improving the quality of emergency care. Methods we conducted a systematic review and metasynthesis to understand the perceptions and experiences of care home residents and their family members who experienced medical emergencies in a care home setting. The review protocol was registered in PROSPERO (CRD42020167018). We searched five electronic databases, MEDLINE, CINAHL, PubMed, Cochrane Library and PsycINFO, supplemented with internet searches and forward and backward citation tracking from included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The Critical Appraisal Skills Programme qualitative checklist was used to assess the quality of studies included in this review. Results of the 6,140 references retrieved, 10 studies from four countries (Australia, Canada, UK and USA) were included in the review and metasynthesis. All the included studies were assessed as being of good quality. Through an iterative approach, we developed six analytical themes: (i) infrastructure and process requirements in care homes to prevent and address emergencies; (ii) the decision to transfer to hospital; (iii) experiences of transfer and hospitalisation for older patients; (iv) good communication is vital for desirable outcomes; (v) legal, regulatory and ethical concerns and (vi) trusting relationships enabled residents to feel safe. Conclusions the emergency care experience for care home residents can be enhanced by ensuring resources, staff capacity and processes for high quality care and trusting relationships between staff, patients and relatives, underpinned by good communication and attention to ethical practice.

Background Guillain-Barré syndrome (GBS) is an immune-mediated polyradiculoneuropathy, with an incidence of 1-2/100,000 per year. Its severity is variable, ranging from very mild cases with brief weakness to severe paralysis, leading to inability to breathe independently, or even death. Currently there is limited evidence exploring the experiences of GBS patients. The aim of this study was to review patients’ experiences and perceptions of GBS and its variants at diagnosis, discharge and during recovery, by conducting a systematic review and thematic meta-synthesis of qualitative studies of patients’ experiences of GBS (and its variants). Methods We searched twelve electronic databases, 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 Our search strategy identified a total of 5,282 citations and after removing duplicates and excluding citations based on title and abstract, and full-text screening, five studies were included in the review and meta-synthesis; all included studies were considered of acceptable quality. Through constant discussions and an iterative approach, we developed six analytical themes following a patient’s journey from suspecting that they had a health problem, through to being hospitalised, experiencing ongoing difficulties, slowly recovering from GBS, adjusting to their new circumstances, and re-evaluating their lives. Conclusions Despite the variety of experiences, it was evident from all included studies that being diagnosed with and surviving GBS was a life-changing experience for all participants. Trial registration Protocol was registered (CRD42019122199) on the International Prospective Register of Systematic Reviews (http://www.crd.york.ac.uk/PROSPERO).

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 ).