Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Background Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers for information and support are inadequately addressed at all key points in the illness trajectory. Methods The Unit is working specifically on an evaluation of the impact of the Mental Capacity Act 2005, and will develop practice guidance to enhance concordance with the Act. Phase One of the study has involved baseline interviews with practitioners across a wide range of services to establish knowledge and expectations of the Act, and to consider change processes when new policy and legislation are implemented. Findings Phase 1, involving baseline interviews with 115 practitioners, identified variable knowledge and understanding about the principles of the Act. Phase 2 is exploring everyday decision-making by people with memory problems and their carers

Urinary incontinence in older women: exploring lived experiences and examining co-production

Rationale: Urinary incontinence (UI) is a common condition in women that leads to involuntary passing of urine. UI can impact social and mental wellbeing due to the associated stigma, which underlines the importance of inclusive research. Co-production research emphasises shared decision-making and collective knowledge; there is a lack of research into the realities of this approach, especially focused on physical illnesses. The Leeds Older women Urinary Incontinence Self-mAnagement (LOUISA) study is the wider project within which the current study is situated, bringing together these components through co-production of a self-management intervention for UI. The current study focuses on the individual perspectives in these areas, in terms of living with UI and stakeholder experiences of co-producing UI research. Aims: 1) To explore older women’s perceptions of living with UI (phase 1); 2) to examine the principles of co-production within the context of the LOUISA project (phase 2). Method: Phase 1 utilised an interpretative phenomenological approach (IPA). A qualitative meta-synthesis was conducted to explore gaps in existing literature, supplemented by interviews with 3 women. For phase 2 a scoping review was conducted to map co-production literature and interviews with LOUISA stakeholders (academic, healthcare provider, service user, funder) and one meeting observation was conducted. Results: The key themes from phase 1 are embarrassment and normalisation. Embarrassment characterised the lived experience of UI, permeating across several themes e.g. childhood experiences and coping strategies. The normalisation of UI as it relates to perceptions of age was another key finding, as UI was often believed to be an ordinary part of ageing. Key themes from phase 2 relate to concepts of co-production and power differentials. Barriers and facilitators to co-production were identified and tensions between theoretical and practical aspects were considered. Power differentials in the context of co-production were also identified as an important consideration. Conclusion: This study provides insight into the lived experience of UI from the perspective of older women living in the UK who have either never sought professional help or have previously engaged with medical services but have since disengaged. Understanding the lived experience of UI is integral to providing appropriate support. This study also provides recommendations for co-producing research for stigmatised long-term conditions (LTCs) similar to UI, based on the experiences of stakeholders involved in an ongoing project

The clinical utility of the electronic toilet-top bidet for Australian nursing home residents and staff

Inability to self-toilet has negative outcomes for older people, including risk of admission to residential care. In residential care, toileting is the most frequent task undertaken by staff and may provoke distress, particularly for people with dementia. This work comprises an iterative, mixed methods investigation of the feasibility and clinical utility of the wash-and-dry toilet-top bidet for older dependent people, staff and family carers. A literature review and three exploratory studies were conducted. First, interviews with five family carers found the bidet acceptable if it met physical and symbolic needs. Ongoing use was mediated by environmental constraints, cleaning ability, reactions of the older person, and quality of interactions with health professionals. Carers reported it cleaned reliably, reduced incontinence and helped ‘normalise’ familial relationships. Second, a single-arm study in a dementia aged care home (ACH) found bidets were feasible and acceptable for residents and staff, were reliable, and cleaned effectively. Staff workload and facility expenditure on incontinence products decreased. Third, a non-randomised, controlled pilot study in two ACHs (n= 49 residents, 73 staff) found bidets were acceptable, reduced staff workload, improved resident behaviour during toileting and lowered rates of constipation. No changes were found in incontinence associated dermatitis or odour. Residents in the bidet condition were more likely to have a clear case of bacteriurea or a probable urinary tract infection, however higher rates of faecal incontinence at baseline may have mediated this result. The studies have ecological validity and bidet technology shows promise for improving dignity and ease of toileting. These studies have contributed to a more nuanced understanding of factors that influence uptake and ongoing use of assistive technologies in aged care settings, and development of measures also provides a basis for future confirmatory studies

Absorbent products for urinary/faecal incontinence: a comparative evaluation of key product designs

Background: The UK health service, nursing homes and public spend around £94 million per year on incontinence pads (absorbent products) to contain urine and/or faeces, but the research base for making informed choices between different product designs is very weak.Objectives: The aim of this trial was to compare the performance and cost-effectiveness of the key absorbent product designs to provide a more solid basis for guiding selection and purchase.A further aim was to carry out the first stage in the development of a quality of life instrument for measuring the impact of absorbent product use on users' lives.Design: The work involved three clinical trials focusing on the three biggest market sectors. Each trial had a similar crossover design in which each participant tested all products within their group in random order.Settings, participants and methods: In Trial 1, 85 women with light urinary incontinence living in the community tested three products from each of the four design categories available (total of 12 test products): disposable inserts (pads); menstrual pads; washable pants with integral pad; and washable inserts. In Trial 2a, 85 moderate/heavily incontinent adults (urinary or urinary/faecal) living in the community (49 men and 36 women) tested three (or two) products from each of the five design categories available (total of 14 test products): disposable inserts (with mesh pants); disposable diapers (nappies); disposable pull-ups (similar to toddlers' trainer pants); disposable T-shaped diapers (nappies with waist-band); and washable diapers. All products were provided in a daytime and a (mostly more absorbent) night-time variant. In these first two trials, the test products were selected on the basis of data from pilot studies. In Trial 2b, 100 moderate/heavily incontinent adults (urinary or urinary/faecal) living in 10 nursing homes (27 men and 73 women) evaluated one product from each of the four disposable design categories from Trial 2a. Products were selected on the basis of product performance in Trial 2a and, again, daytime and night-time variants were provided. The first phase of work to develop a quality of life tool for measuring the impact of using different pad designs was carried out by interviewing participants from Trials 1 and 2a.Outcome measures: Product performance was characterised using validated questionnaires, which asked the participants (in Trials 1 and 2a) or carers (all participants in Trial 2b, except for the few who could report for themselves) to evaluate various aspects of pad performance (leakage, ease of putting on, discreetness, etc.) using a five-point scale (very good–very poor) at the end of the week (or 2 weeks for Trial 2b) of product testing. In addition, participants/carers were asked to save individual used pads in bags for weighing and to indicate the severity of any leakage from them on a three-point scale (none, a little, a lot). These data were used to determine differences in leakage performance. Numbers of laundry items and pads used were recorded to estimate costs, and skin health changes were recorded by the participant or by the researchers (Trial 2b). At the end of testing, participants were interviewed and ranked their preferences (with and without costs), stated the acceptability of each design (highly acceptable–totally unacceptable) and recorded their overall opinion on a visual analogue scale (VAS) of 0–100 points (worst design–best design). This VAS score was used with product costs to estimate cost-effectiveness. In addition, a timed pad changing exercise was conducted with 10 women from Trial 2b to determine any differences between product designs.Results: Results presented are for statistically and clinically significant findings.<br/

Family - Health - Disease

Praca recenzowana / Peer-reviewed paperThis publication includes opinion and research papers written by authors with academic backgrounds from the Czech Republic, Slovakia and Poland. The monograph consists of 14 chapters and the order of them refers to the relationship between the family and the health of its members. The first seven texts concern children’s health problems. The next two concern widely defined issues of nutrition and adult nursing. The next four discuss health issues of the elderly, while the last describes the dilemma of bereaved family members who have to decide about organ donation. The individual chapters show different aspects of family participation in the treatment and care of children, the elderly, the chronically ill, and the disabled. The discussed topics are a part of the wider issue of social medicine. A very important issue is the interdisciplinary problem of interaction between health and illness and their influence on the family, which is on one hand embedded in medical science, while on the other hand it refers to the social sciences, especially family sociology, psychology, pedagogy, and also social policy to some extent. The authors of the monograph also discuss the issue of life quality of the elderly living in domestic environments and the health and social problems they face. The authors also analyse the role of nurses in promoting health, such as immunisation, rational nutrition, and ethical aspects such as the screening of newborns. This monograph is addressed to all who work or want to work with families and support them in the difficult challenges posed by disease. The authors hope the monograph will increase understanding and familiarity with the health problems of relatives

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

BACKGROUND: The needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings. OBJECTIVES: The EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005. DESIGN: Mixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects. SETTING: General practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network. PARTICIPANTS: People with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff. MAIN OUTCOME MEASURES: Dementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia. RESULTS: An educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia. CONCLUSIONS: A tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005. TRIAL REGISTRATION: EVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159. FUNDING: This project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research

Coping and help seeking behaviour in women with Pelvic Floor Dysfunction – the emic perspective

Pelvic Floor Dysfunction: (PFD) encompasses symptoms that rarely occur in isolation and include urinary and faecal incontinence, rectal evacuatory dysfunction and pelvic organ prolapse. It impacts on the quality of life of at least one third of adult women, with recent reviews suggesting that pelvic floor prolapse may occur in up to 50% of parous women. PFD is associated with a delay in seeking help. Why women with PFD seek or do not seek help for their symptoms has been unclear but is recognised as being multi-factorial. Aim: to learn from women with PFD, to understand the coping mechanisms they develop to live with PFD, and the triggers which prompt their seeking help. Methodology: this study, grounded in the naturalist paradigm, was a micro-ethnographic study focusing on the emic perspective of a defined group, women diagnosed with PFD, who presented to an East London Hospital for treatment. Leininger’s Culture Care theory and ethno-nursing methods were used to facilitate knowledge generation. The study took place in three consecutive phases, each informing the next phase. Phase 1 - One Life Health Care History. This was an instrumental case study which obtained a personalised and longitudinal account of the woman’s health, care and illness experiences from a lifetime perspective. Phase 2 - Eight semi structured interviews; these focussed on the themes generated from a review of the literature pertaining to coping and help seeking behaviour, and themes generated from Phase 1, which were continued until saturation was achieved. Phase 3 - Focus groups from three cultures (Turkish, Orthodox Jewish and African) which represent the ethnic mix of the local population. These explored universality and diversity amongst different cultural groups with respect to coping and help seeking behaviour. Results: this study has identified universality and diversity in coping and help seeking behaviour in women with PFD. Personality and culture have a significant impact on coping and help seeking behaviour, and lack of knowledge is a barrier to help seeking. Social taboo and the role of women in society influenced the coping behaviours of women. Women developed masking and containment strategies, and avoided aspects of social interaction to ensure their PFD problems remained secret. The fear of disgrace (opprobrium) and the delay in seeking help is linked to the woman’s position in her society, and the degree to which women appropriate opprobrium is dependent on their personality and their cultural feelings of self-worth as women in their own communities. Recommendations: if women are to be encouraged and supported to seek help for their PFD, it will be imperative to raise public knowledge and awareness of PFD. Public Health Departments, in conjunction with GP practises, will be key in promoting awareness and advertising integrated PFD services, ensuring posters and information leaflets are translated and displayed in facilities frequently used by women. Facilitating ease of access to PFD services will require the development of integrated PFD services, with community based self referral clinics or drop-in clinics being made available. Health care providers need education and support to ensure they empower women to seek help by giving them permission to discuss any PFD concerns they may have. Conclusions: the contribution to knowledge from this study include the lay care practices that women with PFD employ in order to cope with the problem, and an appreciation of the laycare practices utilised by women. Understanding of care influencers has facilitated recommendations for service and practice development. Areas for further research have been identified. The increasing prevalence of PFD is well known, with studies suggesting that over the next 30 years the number of women seeking help for PFD symptoms will increase at twice the population growth rate. Knowledge and understanding of women’s coping and help seeking behaviour is essential if services are to be developed to meet this growing need. Knowledge generated from this research in relation to opprobrium appropriation makes a unique contribution to the discipline of nursing

Double-blind randomised controlled trial of percutaneous tibial nerve stimulation versus sham electrical stimulation in the treatment of faecal incontinence: CONtrol of Faecal Incontinence using Distal NeuromodulaTion (the CONFIDeNT trial)

Background: Faecal incontinence (FI) is a common condition which is often under-reported. It is distressing for those suffering from it, impacting heavily on their quality of life. When conservative strategies fail, treatment options are limited. Percutaneous tibial nerve stimulation (PTNS) is a minimally invasive outpatient treatment, shown in preliminary case series to have significant effectiveness; however, no randomised controlled trial has been conducted. Objectives: To assess the effectiveness of PTNS compared with sham electrical stimulation in the treatment of patients with FI in whom initial conservative strategies have failed. Design: Multicentre, parallel-arm, double-blind randomised (1 : 1) controlled trial. Setting: Eighteen UK centres providing specialist nurse-led (or equivalent) treatment for pelvic floor disorders. Participants: Participants aged > 18 years with FI who have failed conservative treatments and whose symptoms are sufficiently severe to merit further intervention. Interventions: PTNS was delivered via the Urgent® PC device (Uroplasty Limited, Manchester, UK), a hand-held pulse generator unit, with single-use leads and fine-needle electrodes. The needle was inserted near the tibial nerve on the right leg adhering to the manufacturer’s protocol (and specialist training). Treatment was for 30 minutes weekly for a duration of 12 treatments. Validated sham stimulation involved insertion of the Urgent PC needle subcutaneously at the same site with electrical stimulation delivered to the distal foot using transcutaneous electrical nerve stimulation. Main outcome measures: Outcome measures were assessed at baseline and 2 weeks following treatment. Clinical outcomes were derived from bowel diaries and validated, investigator-administered questionnaires. The primary outcome classified patients as responders or non-responders, with a responder defined as someone having achieved ≥ 50% reduction in weekly faecal incontinence episodes (FIEs). Results: In total, 227 patients were randomised from 373 screened: 115 received PTNS and 112 received sham stimulation. There were 12 trial withdrawals: seven from the PTNS arm and five from the sham arm. Missing data were multiply imputed. For the primary outcome, the proportion of patients achieving a ≥ 50% reduction in weekly FIEs was similar in both arms: 39 in the PTNS arm (38%) compared with 32 in the sham arm (31%) [odds ratio 1.28, 95% confidence interval (CI) 0.72 to 2.28; p = 0.396]. For the secondary outcomes, significantly greater decreases in weekly FIEs were observed in the PTNS arm than in the sham arm (beta –2.3, 95% CI –4.2 to –0.3; p = 0.02), comprising a reduction in urge FIEs (p = 0.02) rather than passive FIEs (p = 0.23). No significant differences were found in the St Mark’s Continence Score or any quality-of-life measures. No serious adverse events related to treatment were reported. Conclusions: PTNS did not show significant clinical benefit over sham electrical stimulation in the treatment of FI based on number of patients who received at least a 50% reduction in weekly FIE. It would be difficult to recommend this therapy for the patient population studied. Further research will concentrate on particular subgroups of patients, for example those with pure urge FI. Trial registration: Current Controlled Trials ISRCTN88559475. Funding: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 19, No. 77. See the NIHR Journals Library website for further project information