How organisational arrangements affect service provision

This research shows the importance of good organisational support for care giving. Organisational arrangements can shape what individual staff members do in the highly skilled work of meeting resident needs. This may challenge traditional views about care quality that focus attention only on care workers

Older care-home residents as collaborators or advisors in research: a systematic review

Background: patient and public involvement (PPI) in research can enhance its relevance. Older care-home residents are often not involved in research processes even when studies are care-home focused. Objective: to conduct a systematic review to find out to what extent and how older care-home residents have been involved in research as collaborators or advisors. Methods: a systematic literature search of 12 databases, covering the period from 1990-September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers. Results: 19 reports and papers were identified relating to 11 different studies. Care-home residents had been involved in the research process in multiple ways. Two key themes were identified: (i) the differences in residents’ involvement in small-scale and large-scale studies, (ii) the barriers to and facilitators of involvement. Conclusions: small-scale studies involved residents as collaborators in participatory action research, whereas larger studies involved residents as consultants in advisory roles. There are multiple facilitators of and barriers to involving residents as PPI members. The reporting of PPI varies. While it is difficult to evaluate the impact of involving care-home residents on the research outcomes, impact has been demonstrated from more inclusive research processes with care-home residents. The review shows that older care-home residents can be successfully involved in the research process

The role of resilient coping in dementia carers' wellbeing

Background: Carers of people with dementia are at risk of psychological distress. However, some carers experience positive outcomes and resilient coping may account for this variance in carers' wellbeing. Aims: To assess the role of resilient coping in dementia carers' wellbeing. Methods: A cross-sectional survey of carers measured resilient coping, depression, anxiety, stress and burden. First, group comparisons between carers with high, medium and low resilient coping were made. Next, mediation analyses were conducted to identify if resilient coping was a mediator in the relationships between carer wellbeing and distress. Findings: Carers (n=110) were aged 30–80+ years; 66% female; 72% provided 40+ hours care per week; 23% were highly resilient. Highly resilient carers report significantly less distress than low resilient carers. Resilient coping was a partial mediator in the relationships between wellbeing and depression, anxiety, stress and burden. Conclusions: Interventions promoting or maintaining resilient coping may reduce morbidity in family carers

Findings from the University of East Anglia's evaluation of the Ipswich/Suffolk multi-agency strategy on prostitution following the five murders in 2006

This paper provides a summary of the main findings of an evaluation of a new multi-agency Strategy set up to tackle on-street sex-working, after five prostitutes were murdered in the English county town of Ipswich. It focuses on the outcomes of the Strategy’s four objectives, including their cost-effectiveness. It also offers an insight into the lives of the women who were previously involved in street sex-working, the means by which the Strategy helped them to move towards exiting this work, and the ways in which younger people identified as being at risk of entering it might be prevented from doing so

Lost Voices in Research: Exposing the Gaps in the Mental Capacity Act 2005

Despite laudable intentions, since its inception, the Mental Capacity Act 2005 of England and Wales (MCA) has proved to be a controversial piece of legislation. The majority of legal scholarship has concentrated on the problems created by the Act in relation to the treatment of incapacitated patients. However, there is an additional and somewhat unexplored dimension to the MCA, that of research. We argue here that the research provisions of the MCA are poorly drafted and do not provide an appropriate balance between protection and empowerment. We also assert that contrasting obligations and expectations are placed on different parties in the approval process, which creates a blurred sense of responsibility and a potential chilling effect

The use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies

Background: antipsychotic medications have been used to manage behavioural and psychological symptoms of dementia (BPSD). Due to the potential risks associated with these medications for people with dementia, non-pharmacological interventions (NPIs) have been recommended as safer alternatives. However, it is unknown if, or how, these interventions are used in care homes to help people experiencing BPSD. Aim: to explore the use of NPIs in care homes to manage BPSD. Methods: In-depth, ethnographic case studies were conducted in four care homes; in total, they included interviews with 40 care-home staff and 384 hours of participant observations. Findings: NPIs, some of which are the focus of efficacy research, were used in care homes but predominantly as activities to improve the quality of life of all residents and not identified by staff as meeting individual needs in order to prevent or manage specific behaviours. Socially relevant activities such as offering a cup of tea were used to address behaviours in the moment. Residents with high levels of need experienced barriers to inclusion in the activities. Conclusions: there is a gap between rhetoric and practice with most NPIs in care homes used as social activities rather than as targeted interventions. If NPIs are to become viable alternatives to antipsychotic medications in care homes, further work is needed to embed them into usual care practices and routines. Training for care-home staff could also enable residents with high needs to gain better access to suitable activities

Most common refusals of personal care in advanced dementia: psychometric properties of the RoCIS

Background and Objectives: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviours such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusals of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviours. Research Design and Methods: Data from 129 dyads were analysed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability. Results: Following Rasch analysis, the item ‘upset’ was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach’s alpha 0.88). 68% of people with dementia had refused care in the last month, with ‘verbally refused’ the most common type of refusal behaviour. People in the ‘very severe/profound’ stage of dementia showed more refusal behaviours than those in the ‘severe’ stage. Discussion and Implications: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia

Inclusion under the Mental Capacity Act (2005) : a review of research policy guidance and governance structures in England and Wales

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognised, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings

Strategies and interventions to reduce or manage refusals in personal care in dementia: a systematic review

Background: Refusals of care in dementia are common and can create difficult situations for caregivers. Little is known about the best way to manage them. Aim: To identify possible strategies and interventions to reduce or cope with refusals of care in dementia, and determine the evidence for these.  Methods: We searched MEDLINE, CINAHL, PsycINFO, EMBASE, AMED and Cochrane Central Register of Controlled Trials databases August 2018, with an updated search August 2019. An additional lateral search was conducted. Two researchers screened all records for potential eligibility and quality. Narrative synthesis was used to combine the findings.  Results: Out of the 5953 records identified, 36 articles, relating to 30 studies, met the eligibility criteria. Twenty-eight of the studies (93%) were set in long-term care facilities, one in a psychogeriatric unit and one with community dwelling people. Fourteen out of the 30 studies focussed on general or mixed care activities, 8 bathing, 4 mealtimes, 2 medication administration, and 2 mouth care. Strategies or interventions identified as potential ways to reduce refusals included: music interventions, interaction and communication style, caregiver approach, bathing techniques, abilities focussed approaches, distraction approaches, and video-simulated presence of a loved one. There was most evidence for music interventions and different bathing techniques, and interaction and communication styles were associated with reduced refusals. There was no evidence that slow-stroke massage (mixed care activities) or aromatherapy (mixed care activities and medication administration) reduced refusals of care.  Conclusions: Some non-pharmacological interventions can reduce, but not eliminate, refusals of care, such as playing music during care or communicating positively without using elderspeak. More research evidence is needed to underpin strategies identified as encouraging such as Namaste Care or distraction techniques. Future research should address gaps identified such as, the absence of research examining non-pharmacological interventions for refusals of care in hospital settings and in community settings with home-care workers, and the limited research involving family carers. Tweetable abstract: Playing music during care and offering different bathing options can reduce refusal behaviours in dementia, whereas elderspeak and negative communication are associated with refusals