Structure and agency attributes of residents' use of dining space during mealtimes in care homes for older people.

Research stresses that mealtimes in care homes for older people are vital social events in residents' lives. Mealtimes have great importance for residents as they provide a sense of normality, reinforce individuals' identities and orientate their routines. This ethnographic study aimed to understand residents' use of dining spaces during mealtimes, specifically examining residents' table assignment processes. Data were collected in summer 2015 in three care homes located in England. The research settings looked after residents aged 65+, each having a distinct profile: a nursing home, a residential home for older people and a residential home for those with advanced dementia. Analyses revealed a two-stage table assignment process: 1. Allocation - where staff exert control by determining residents' seating. Allocation is inherently part of the care provided by the homes and reflects the structural element of living in an institution. This study identified three strategies for allocation adopted by the staff: (a) personal compatibilities; (b) according to gender and (c) 'continual allocation'. 2. Appropriation - it consists of residents routinely and willingly occupying the same space in the dining room. Appropriation helps residents to create and maintain their daily routines and it is an expression of their agency. The findings demonstrate the mechanisms of residents' table assignment and its importance for their routines, contributing towards a potentially more self-fulfilling life. These findings have implications for policy and care practices in residential and nursing homes.

Process of implementing and delivering the Prevention of Delirium system of care: a mixed method preliminary study.

BACKGROUND: Delirium is a frequent complication of hospital admission among older people. Multicomponent interventions which can reduce incident delirium by ≈one-third are recommended by the National Institute of Health and Care Excellence. Currently, a standardised delirium prevention system of care suitable for adoption in the UK National Health Service does not exist. The Prevention of Delirium (POD) system of care is a theory informed, multicomponent intervention and systematic implementation process which includes a role for hospital volunteers. We report POD implementation and delivery processes in NHS hospital wards, as part of a feasibility study. METHODS: A comparative case study design and participatory, multi-method evaluation was performed with sequential six month preparatory and six month delivery stages. Six wards in five hospitals in Northern England were recruited. Methods included: facilitated workshops; observation of POD preparatory activities; qualitative interviews with staff; collection of ward organisational and patient profiles; and structured observation of staff workload. RESULTS: POD implementation and delivery was fully accomplished in four wards. On these wards, implementation strategies informed by Normalization Process Theory operated synergistically and cumulatively. An interactive staff training programme on delirium and practices that might prevent it among those at risk, facilitated purposeful POD engagement. Observation of practice juxtaposed to action on delirium preventive interventions created tension for change, legitimating new ways of organising work around it. Establishing systems, processes and documentation to make POD workable in the ward setting, enhanced staff ownership. 'Negotiated experimentation' to involve staff in creating, appraising and modifying systems and practices, helped integrate the POD care system in ward routines. Activating these change mechanisms required a particular form of leadership: pro-active 'steer', and senior ward 'facilitator' to extend 'reach' to the staff group. Organisational discontinuity (i.e. ward re-location and re-modelling) disrupted and extended POD implementation; staff shortages adversely affected staff capacity to invest in POD. Findings resulted in the development of 'site readiness' criteria without which implementation of this complex intervention was unlikely to occur. CONCLUSIONS: POD implementation and delivery is feasible in NHS wards, but a necessary context for success is 'site readiness.'

Needles, Jabs and Jags: a qualitative exploration of barriers and facilitators to child and adult immunisation uptake among Gypsies, Travellers and Roma.

BACKGROUND: Gypsies, Travellers and Roma (referred to as Travellers) are less likely to access health services including immunisation. To improve immunisation rates, it is necessary to understand what helps and hinders individuals in these communities in taking up immunisations. This study had two aims. 1. Investigate the views of Travellers in the UK on the barriers and facilitators to acceptability and uptake of immunisations and explore their ideas for improving immunisation uptake; 2. Examine whether and how these responses vary across and within communities, and for different vaccines (childhood and adult). METHODS: This was a qualitative, cross-sectional interview study informed by the Social Ecological Model. Semi-structured interviews were conducted with 174 Travellers from six communities: Romanian Roma, English Gypsy/Irish Travellers (Bristol), English Gypsy (York), Romanian/Slovakian Roma, Scottish Show people (Glasgow) and Irish Traveller (London). The focus was childhood and selected adult vaccines. Data were analysed using the Framework approach. RESULTS: Common accounts of barriers and facilitators were identified across all six Traveller communities, similar to those documented for the general population. All Roma communities experienced additional barriers of language and being in a new country. Men and women described similar barriers and facilitators although women spoke more of discrimination and low literacy. There was broad acceptance of childhood and adult immunisation across and within communities, with current parents perceived as more positive than their elders. A minority of English-speaking Travellers worried about multiple/combined childhood vaccines, adult flu and whooping cough and described barriers to booking and attending immunisation. Cultural concerns about antenatal vaccines and HPV vaccination were most evident in the Bristol English Gypsy/Irish Traveller community. Language, literacy, discrimination, poor school attendance, poverty and housing were identified as barriers across different communities. Trustful relationships with health professionals were important and continuity of care valued. CONCLUSIONS: The experience of many Travellers in this study, and the context through which they make health decisions, is changing. This large study identified key issues that should be considered when taking action to improve uptake of immunisations in Traveller families and reduce the persistent inequalities in coverage. TRIAL REGISTRATION: Current Controlled Trials ISRCTN20019630 .

Client and clinical staff perceptions of barriers to and enablers of the uptake and delivery of behavioural interventions for urinary incontinence: qualitative evidence synthesis.

AIM: To evaluate factors influencing uptake and delivery of behavioural interventions for urinary incontinence from the perspective of clients and clinical staff. BACKGROUND: Behavioural interventions are recommended as first-line therapy for the management of urinary incontinence. Barriers to and enablers of uptake and delivery of behavioural interventions have not been reviewed. DESIGN: Qualitative evidence synthesis. DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsychInfo, AMED (inception to May 2013); Proceedings of the International Continence Society (ICS) (2006-2013). REVIEW METHODS: Studies where data were collected from clients or staff about their experiences or perceptions of behavioural interventions were included. Two reviewers independently screened records on title and abstract. Full-text papers were obtained for records identified as potentially relevant by either reviewer. Two reviewers independently filtered all full-text papers for inclusion, extracted findings and critically appraised studies. We used an approach akin to Framework, using a matrix of pre-specified themes to classify the data and facilitate its presentation and synthesis. RESULTS: Seven studies involving 200 participants identified clients' views. Findings identified from at least one study of moderate quality included increased fear of accidents and convenience of treatment. Factors enabling participation included realistic goals and gaining control. Six studies involving 427 participants identified staff views. Findings identified from at least one study of moderate quality included staff education and perceptions of treatment effectiveness. Enabling factors included teamwork and experience of success. CONCLUSION: There is little detailed exploration of clients' experiences of, and responses to, behavioural interventions. Evidence for staff relates predominantly to prompted voiding in long-term residential care. Studies of the uptake and delivery of other behavioural interventions in other settings are warranted.

UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING): a qualitative interview study.

BACKGROUND: Gypsies, Travellers and Roma (referred to as Travellers) are less likely to access health services, including immunisation. To improve immunisation rates, we need to understand what helps and hinders individuals in these communities in taking up immunisations. AIMS: (1) Investigate the barriers to and facilitators of acceptability and uptake of immunisations among six Traveller communities across four UK cities; and (2) identify possible interventions to increase uptake of immunisations in these Traveller communities that could be tested in a subsequent feasibility study. METHODS: Three-phase qualitative study underpinned by the social ecological model. Phase 1: interviews with 174 Travellers from six communities: Romanian Roma (Bristol); English Gypsy/Irish Traveller (Bristol); English Gypsy (York); Romanian/Slovakian Roma (Glasgow); Scottish Showpeople (Glasgow); and Irish Traveller (London). Focus on childhood and adult vaccines. Phase 2: interviews with 39 service providers. Data were analysed using the framework approach. Interventions were identified using a modified intervention mapping approach. Phase 3: 51 Travellers and 25 service providers attended workshops and produced a prioritised list of potentially acceptable and feasible interventions. RESULTS: There were many common accounts of barriers and facilitators across communities, particularly across the English-speaking communities. Scottish Showpeople were the most similar to the general population. Roma communities experienced additional barriers of language and being in a new country. Men, women and service providers described similar barriers and facilitators. There was widespread acceptance of childhood and adult immunisation, with current parents perceived as more positive than their elders. A minority of English-speaking Travellers worried about multiple/combined childhood vaccines, adult flu and whooping cough. Cultural concerns about vaccines offered during pregnancy and about human papillomavirus were most evident in the Bristol English Gypsy/Irish Traveller community. Language, literacy, discrimination, poor school attendance, poverty and housing were identified by Travellers and service providers as barriers for some. Trustful relationships with health professionals were important and continuity of care was valued. A few English-speaking Travellers described problems of booking and attending for immunisation. Service providers tailored their approach to Travellers, particularly the Roma. Funding cuts, NHS reforms and poor monitoring challenged their work. Five 'top-priority' interventions were agreed across communities and service providers to improve the immunisation among Travellers who are housed or settled on an authorised site: (1) cultural competence training for health professionals and frontline staff; (2) identification of Travellers in health records to tailor support and monitor uptake; (3) provision of a named frontline person in general practitioner practices to provide respectful and supportive service; (4) flexible and diverse systems for booking appointments, recall and reminders; and (5) protected funding for health visitors specialising in Traveller health, including immunisation. LIMITATIONS: No Travellers living on the roadside or on unofficial encampments were interviewed. We should exert caution in generalising to these groups. FUTURE WORK: To include development, implementation and evaluation of a national policy plan (and practice guidance plan) to promote the uptake of immunisation among Traveller communities. STUDY REGISTRATION: Current Controlled Trials ISRCTN20019630 and UK Clinical Research Network Portfolio number 15182. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 72. See the NIHR Journals Library website for further project information.

Expectant parents' views of factors influencing infant feeding decisions in the antenatal period: A systematic review.

OBJECTIVE: To explore the factors that influence expectant parents' infant feeding decisions in the antenatal period. DESIGN: Mixed method systematic review focussing on participant views data. DATA SOURCES: CINAHL, Medline, Embase and PsychInfo databases were interrogated using initial keywords and then refined terms to elicit relevant studies. Reference lists were checked and hand-searching was undertaken for 2 journals ('Midwifery' and 'Social Science and Medicine') covering a 3 year time period (January 2011-March 2014). Key inclusion criteria: studies reflecting expectant parents' views of the factors influencing their infant feeding decisions in the antenatal period; Studies in the English language published after 1990, from developed countries and of qualitative, quantitative or mixed method design. REVIEW METHODS: A narrative interpretive synthesis of the views data from studies of qualitative, quantitative and mixed method design. Data were extracted on study characteristics and parents' views, using the Social Ecological Model to support data extraction and thematic synthesis. Synthesis was influenced by the Evidence for Policy and Practice Information and Co-Ordinating Centre approach to mixed method reviews. RESULTS: Of the 409 studies identified through search methods, 17 studies met the inclusion criteria for the review. Thematic synthesis identified 9 themes: Bonding/Attachment; Body Image; Self Esteem/Confidence; Female Role Models; Family and Support Network; Lifestyle; Formal Information Sources; Knowledge; and Feeding in front of others/Public. The review identified a significant bias in the data towards negative factors relating to the breastfeeding decision, suggesting that infant feeding was not a choice between two feeding options, but rather a process of weighing reasons for and against breastfeeding. Findings reflected the perception of the maternal role as intrinsic to the expectant mothers' infant feeding decisions. Cultural perceptions permeated personal, familial and social influences on the decision-making process. Expectant mothers were sensitive to the way professionals attempted to support and inform them about infant feeding choices. CONCLUSIONS: By taking a Social Ecological perspective, we were able to explore and demonstrate the multiple influences impacting on expectant parents in the decision-making process. A better understanding of expectant parents' views and experiences in making infant feeding decisions in the prenatal and antenatal periods will inform public health policy and the coordination of service provision to support infant feeding activities.

The PiTSTOP study: a feasibility cluster randomized trial of delirium prevention in care homes for older people.

BACKGROUND AND OBJECTIVES: delirium is a distressing but potentially preventable condition common in older people in long-term care. It is associated with increased morbidity, mortality, functional decline, hospitalization and significant healthcare costs. Multicomponent interventions, addressing delirium risk factors, have been shown to reduce delirium by one-third in hospitals. It is not known whether this approach is also effective in long-term care. In previous work, we designed a bespoke delirium prevention intervention, called 'Stop Delirium!' In preparation for a definitive trial of Stop Delirium, we sought to address key aspects of trial design for the particular circumstances of care homes. DESIGN: a cluster randomized feasibility study with an embedded process evaluation. SETTING AND PARTICIPANTS: residents of 14 care homes for older people in one metropolitan district in the UK. INTERVENTION: Stop Delirium!: a 16-month-enhanced educational package to support care home staff to address key delirium risk factors. Control homes received usual care. MEASUREMENTS: we collected data to determine the following: recruitment and attrition; delirium rates and variability between homes; feasibility of measuring delirium, resource use, quality of life, hospital admissions and falls; and intervention implementation and adherence. RESULTS: two-thirds (215) of eligible care home residents were recruited. One-month delirium prevalence was 4.0% in intervention and 7.1% in control homes. Proposed outcome measurements were feasible, although our approach appeared to underestimate delirium. Health economic evaluation was feasible using routinely collected data. CONCLUSION: a definitive trial of delirium prevention in long-term care is needed but will require some further design modifications and pilot work.

A Pragmatic Randomized Controlled Trial of 6-Step vs 3-Step Hand Hygiene Technique in Acute Hospital Care in the United Kingdom.

OBJECTIVE To evaluate the microbiologic effectiveness of the World Health Organization's 6-step and the Centers for Disease Control and Prevention's 3-step hand hygiene techniques using alcohol-based handrub. DESIGN A parallel group randomized controlled trial. SETTING An acute care inner-city teaching hospital (Glasgow). PARTICIPANTS Doctors (n=42) and nurses (n=78) undertaking direct patient care. INTERVENTION Random 1:1 allocation of the 6-step (n=60) or the 3-step (n=60) technique. RESULTS The 6-step technique was microbiologically more effective at reducing the median log10 bacterial count. The 6-step technique reduced the count from 3.28 CFU/mL (95% CI, 3.11-3.38 CFU/mL) to 2.58 CFU/mL (2.08-2.93 CFU/mL), whereas the 3-step reduced it from 3.08 CFU/mL (2.977-3.27 CFU/mL) to 2.88 CFU/mL (-2.58 to 3.15 CFU/mL) (P=.02). However, the 6-step technique did not increase the total hand coverage area (98.8% vs 99.0%, P=.15) and required 15% (95% CI, 6%-24%) more time (42.50 seconds vs 35.0 seconds, P=.002). Total hand coverage was not related to the reduction in bacterial count. CONCLUSIONS Two techniques for hand hygiene using alcohol-based handrub are promoted in international guidance, the 6-step by the World Health Organization and 3-step by the Centers for Disease Control and Prevention. The study provides the first evidence in a randomized controlled trial that the 6-step technique is superior, thus these international guidance documents should consider this evidence, as should healthcare organizations using the 3-step technique in practice. Infect Control Hosp Epidemiol 2016;37:661-666.

Implementing a Systematic Voiding Program for Patients With Urinary Incontinence After Stroke.

We explored health professionals' views of implementing a systematic voiding program (SVP) in a multi-site qualitative process evaluation in stroke services recruited to the intervention arms of a cluster randomized controlled feasibility trial during 2011-2013. We conducted semi-structured group or individual interviews with 38 purposively selected nursing, managerial, and care staff involved in delivering the SVP. Content analysis of transcripts used normalization process theory (NPT) as a pre-specified organization-level exploratory framework. Barriers to implementing the SVP included perceived lack of suitability for some patient groups, patient fear of extending hospital stay, and difficulties with SVP enactment, scheduling, timing, recording, and monitoring. Enablers included the guidance provided by the SVP, patient and relative involvement, extra staff, improved nursing skill and confidence, and experience of success. Three potential mechanisms of consistency, visibility, and individualization linked the SVP process with improvements in outcome, and should be emphasized in SVP implementation.

Prevention of delirium (POD) for older people in hospital: study protocol for a randomised controlled feasibility trial.

BACKGROUND: Delirium is the most frequent complication among older people following hospitalisation. Delirium may be prevented in about one-third of patients using a multicomponent intervention. However, in the United Kingdom, the National Health Service has no routine delirium prevention care systems. We have developed the Prevention of Delirium Programme, a multicomponent delirium prevention intervention and implementation process. We have successfully carried out a pilot study to test the feasibility and acceptability of implementation of the programme. We are now undertaking preliminary testing of the programme. METHODS/DESIGN: The Prevention of Delirium Study is a multicentre, cluster randomised feasibility study designed to explore the potential effectiveness and cost-effectiveness of the Prevention of Delirium Programme. Sixteen elderly care medicine and orthopaedic/trauma wards in eight National Health Service acute hospitals will be randomised to receive the Prevention of Delirium Programme or usual care. Patients will be eligible for the trial if they have been admitted to a participating ward and are aged 65 years or over. The primary objectives of the study are to provide a preliminary estimate of the effectiveness of the Prevention of Delirium Programme as measured by the incidence of new onset delirium, assess the variability of the incidence of new-onset delirium, estimate the intracluster correlation coefficient and likely cluster size, assess barriers to the delivery of the Prevention of Delirium Programme system of care, assess compliance with the Prevention of Delirium Programme system of care, estimate recruitment and follow-up rates, assess the degree of contamination due to between-ward staff movements, and investigate differences in financial costs and benefits between the Prevention of Delirium Programme system of care and standard practice. Secondary objectives are to investigate differences in the number, severity and length of delirium episodes (including persistent delirium); length of stay in hospital; in-hospital mortality; destination at discharge; health-related quality of life and health resource use; physical and social independence; anxiety and depression; and patient experience. DISCUSSION: This feasibility study will be used to gather data to inform the design of a future definitive randomised controlled trial. TRIAL REGISTRATION: ISRCTN01187372 . Registered 13 March 2014.

UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING): protocol for an exploratory, qualitative study.

INTRODUCTION: Gypsies, Travellers and Roma (referred to here as Travellers) experience significantly poorer health and have shorter life expectancy than the general population. They are also less likely to access health services including immunisation. To improve immunisation rates, we need to understand what helps and hinders individuals in these communities in taking up immunisations. This study has two aims: (1) Investigate the barriers and facilitators to acceptability and uptake of immunisations among six Traveller communities in the UK; (2) Identify potential interventions to increase uptake in these Traveller communities. METHODS AND ANALYSIS: A three-phase qualitative study with six Traveller communities. PHASE 1: In each community, we will explore up to 45 Travellers' views about the influences on their immunisation behaviours and ideas for improving uptake in their community. PHASE 2: In each community, we will investigate 6-8 service providers' perspectives on barriers and facilitators to childhood and adult immunisations for Traveller communities with whom they work, and ideas to improve uptake. Interview data will be analysed using the Framework approach. PHASE 3: The findings will be discussed and interventions prioritised in six workshops, each with 10-12 phase 1 and 3-4 phase 2 participants. ETHICS AND DISSEMINATION: This research received approval from NRES Committee Yorkshire and The Humber-Leeds East (Ref. 13/YH/02). It will produce (1) findings on the barriers and facilitators to uptake of immunisations in six Traveller communities; (2) a prioritised list of potentially feasible and acceptable interventions for increasing uptake in these communities; and (3) methodological development in undertaking research with diverse Traveller communities. The study has the potential to inform new ways of delivering services to ensure high immunisation uptake. Findings will be disseminated to participants, relevant UK organisations with responsibility for the implementation of immunisation policy and Traveller health/welfare; and submitted for publication in academic journals. TRIAL REGISTRATION NUMBER: ISRCTN20019630.

British-Pakistani women's perspectives of diabetes self-management: the role of identity.

AIMS AND OBJECTIVES: To explore the effects of type 2 diabetes on British-Pakistani women's identity and its relationship with self-management. BACKGROUND: Type 2 diabetes is more prevalent and has worse outcomes among some ethnic minority groups. This may be due to poorer self-management and an inadequate match of health services to patient needs. The influence that type 2 diabetes has on British-Pakistani women's identity and subsequent self-management has received limited attention. DESIGN: An explorative qualitative study. METHODS: Face-to-face semi-structured English and Urdu language interviews were conducted with a purposively selected heterogeneous sample of 15 British-Pakistani women with type 2 diabetes. Transcripts were analysed thematically. RESULTS: Four themes emerged: Perceived change in self emphasised how British-Pakistani women underwent a conscious adaptation of identity following diagnosis; Familiarity with ill health reflected women's adjustment to their changed identity over time; Diagnosis improves social support enabled women to accept changes within themselves and Supporting family is a barrier to self-management demonstrated how family roles were an aspect of women's identities that was resilient to change. The over-arching theme Role re-alignment enables successful self-management encapsulated how self-management was a continuous process where achievements needed to be sustained. Inter-generational differences were also noted: first generation women talked about challenges associated with ageing and co-morbidities; second generation women talked about familial and work roles competing with self-management. CONCLUSIONS: The complex nature of British-Pakistani women's self-identification requires consideration when planning and delivering healthcare. RELEVANCE TO CLINICAL PRACTICE: Culturally competent practice should recognise how generational status influences self-identity and diabetes self-management in ethnically diverse women. Health professionals should remain mindful of effective self-management occurring alongside, and being influenced by, other aspects of life.

Tailored interventions to address determinants of practice.

BACKGROUND: Tailored intervention strategies are frequently recommended among approaches to the implementation of improvement in health professional performance. Attempts to change the behaviour of health professionals may be impeded by a variety of different barriers, obstacles, or factors (which we collectively refer to as determinants of practice). Change may be more likely if implementation strategies are specifically chosen to address these determinants. OBJECTIVES: To determine whether tailored intervention strategies are effective in improving professional practice and healthcare outcomes. We compared interventions tailored to address the identified determinants of practice with either no intervention or interventions not tailored to the determinants. SEARCH METHODS: We conducted searches of The Cochrane Library, MEDLINE, EMBASE, PubMed, CINAHL, and the British Nursing Index to May 2014. We conducted a final search in December 2014 (in MEDLINE only) for more recently published trials. We conducted searches of the metaRegister of Controlled Trials (mRCT) in March 2013. We also handsearched two journals. SELECTION CRITERIA: Cluster-randomised controlled trials (RCTs) of interventions tailored to address prospectively identified determinants of practice, which reported objectively measured professional practice or healthcare outcomes, and where at least one group received an intervention designed to address prospectively identified determinants of practice. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed quality and extracted data. We undertook qualitative and quantitative analyses, the quantitative analysis including two elements: we carried out 1) meta-regression analyses to compare interventions tailored to address identified determinants with either no interventions or an intervention(s) not tailored to the determinants, and 2) heterogeneity analyses to investigate sources of differences in the effectiveness of interventions. These included the effects of: risk of bias, use of a theory when developing the intervention, whether adjustment was made for local factors, and number of domains addressed with the determinants identified. MAIN RESULTS: We added nine studies to this review to bring the total number of included studies to 32 comparing an intervention tailored to address identified determinants of practice to no intervention or an intervention(s) not tailored to the determinants. The outcome was implementation of recommended practice, e.g. clinical practice guideline recommendations. Fifteen studies provided enough data to be included in the quantitative analysis. The pooled odds ratio was 1.56 (95% confidence interval (CI) 1.27 to 1.93, P value < 0.001). The 17 studies not included in the meta-analysis had findings showing variable effectiveness consistent with the findings of the meta-regression. AUTHORS' CONCLUSIONS: Despite the increase in the number of new studies identified, our overall finding is similar to that of the previous review. Tailored implementation can be effective, but the effect is variable and tends to be small to moderate. The number of studies remains small and more research is needed, including trials comparing tailored interventions to no or other interventions, but also studies to develop and investigate the components of tailoring (identification of the most important determinants, selecting interventions to address the determinants). Currently available studies have used different methods to identify determinants of practice and different approaches to selecting interventions to address the determinants. It is not yet clear how best to tailor interventions and therefore not clear what the effect of an optimally tailored intervention would be.

Parents' experiences of living with a child with hydrocephalus: a cross-sectional interview-based study.

BACKGROUND: Shunts, the main treatment for hydrocephalus, are problematic because they frequently malfunction. Detecting shunt malfunction is challenging because symptoms are similar to those of common childhood illnesses, particularly viral infections. Parents are responsible for identifying shunt malfunction and responding accordingly. Understanding parents' experiences has the potential to improve parent-professional collaboration and the management of the child's condition. AIM: To explore parents' experiences of living with a child with hydrocephalus and their decisions when they suspect shunt malfunction. DESIGN AND METHODS: A cross-sectional interview-based survey using qualitative methods was undertaken. Twenty-five parents participated in the interviews. Framework approach underpinned data analysis. FINDINGS: Three concepts, 'uncertainty', 'developing expertise', and 'a normal life', were identified. These concepts were dynamic in nature as parents learned through experience, adapted to changes in their child's health status and made decisions about their needs. Uncertainty because of the unpredictability and life-threatening nature of shunt malfunction dominated parents' accounts. Through experience, parents learned to differentiate between symptoms that suggested a shunt problem and those of other childhood illnesses, but perceived their expertise was not always valued by health professionals or used to inform clinical decisions. Decisions about where or when to seek advice related to prior experiences of health-care services and minimizing disruption for the whole family. CONCLUSION: Parents can recognize illness symptoms suggestive of shunt malfunction and want to collaborate with health professionals about the management of their child's condition. Collaboration with parents requires health professionals to listen to parents' concerns and value their experiences.

Are parents and professionals making shared decisions about a child's care on presentation of a suspected shunt malfunction: a mixed method study?

BACKGROUND: Shunts, the main treatment for hydrocephalus, are problematic as they frequently malfunction. Identifying shunt malfunction requires parents to recognize its symptoms and health professionals to integrate parents' information about the child's symptoms within the clinical assessment to reach a diagnosis. AIM: To investigate parent-professional shared decision making during the diagnosis of suspected shunt malfunction in acute hospital admissions. DESIGN AND METHODS: A mixed method study involving audio recordings of admission consultations, a shared decision making questionnaire and interviews 1-week post-consultation, was undertaken. Twenty-eight family members and fourteen health professionals participated. The interactions were analysed using conversational analysis, framework approach for the interview data and descriptive statistics for questionnaire responses. FINDINGS: Both parents and professionals focussed on establishing a diagnosis and ruling out shunt malfunction when a child with hydrocephalus was ill. Participants' perceived effective collaboration as central to this task: parents wanted to contribute to the process of diagnosis by providing information about the likely cause of symptoms. Professionals were satisfied with the level of involvement by parents, although parent satisfaction was more variable. The challenge for professionals was to integrate parents' expertise of their child's presenting symptoms within clinical decision making processes. CONCLUSION: In this context, both parents' and professionals' perceived their interactions to be about problem-solving, rather than making decisions about treatments. Although the shared decision-making model can help patients to make better decisions between treatment options, it is unclear how best to support collaboration between professionals and parents to ensure a good problem-solving process.

Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature.

BACKGROUND: Living with a child with a long-term condition can result in challenges above usual parenting because of illness-specific demands. A critical evaluation of research exploring parents' experiences of living with a child with a long-term condition is timely because international health policy advocates that patients with long-term conditions become active collaborators in care decisions. METHODS: A rapid structured review was undertaken (January 1999-December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents' experiences of living with a child with a long-term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria. RESULTS: Thirty-four studies met the inclusion criteria. The impact of living with a child with a long-term condition related to dealing with immediate concerns following the child's diagnosis and responding to the challenges of integrating the child's needs into family life. Parents' perceived they are not always supported in their quest for information and forming effective relationships with health-care professionals can be stressful. Although having ultimate responsibility for their child's health can be overwhelming, parents developed considerable expertise in managing their child's condition. CONCLUSION: Parents' accounts suggest they not always supported in their role as manager for their child's long-term condition and their expertise, and contribution to care is not always valued.

A systematic review of research into black and ethnic minority patients' views on self-management of type 2 diabetes.

CONTEXT: Eliciting patients' views of type 2 diabetes self-management provides insights on how policy and services might better support the needs of this population. OBJECTIVE: To synthesize black and ethnic minority patients' views on the barriers and facilitators influencing the self-management of type 2 diabetes. SEARCH STRATEGY: A systematic search of international literature published in nine electronic databases was undertaken in 2008. Search strategies used both MeSH and free-text terms. Two relevant journals were also hand searched. INCLUSION CRITERIA: Any primary empirical study published in the English language since 1986 that reported black and ethnic minority patients' views on type 2 diabetes self-management. DATA EXTRACTION AND SYNTHESIS: Data were extracted and study quality was formally assessed. Data were analysed using thematic synthesis. MAIN RESULTS: Fifty-seven studies were included, of qualitative (n = 54), mixed-method (n = 2) or quantitative (n = 1) design. Studies were from North America (n = 41), Europe (n = 14) and Australia (n = 2), including 1735 participants in total. Three analytical themes emerged: 'Importance of identity'; 'Being understood by others' and 'Making sense of condition', all linked conceptually under the overarching theme 'Sense of self'. The quality of the studies varied. DISCUSSION AND CONCLUSIONS: The findings provide insight into what black and minority ethnic people regard as the barriers to, and facilitators of self-management, as opposed to what health professionals, policy makers and trial researchers may have assumed. Recognition of the views of people with diabetes is essential for the design and delivery of patient-centred care and policies.

Identifying continence options after stroke (ICONS): a cluster randomised controlled feasibility trial.

BACKGROUND: Urinary incontinence (UI) affects half of patients hospitalised after stroke and is often poorly managed. Cochrane systematic reviews have shown some positive impact of conservative interventions (such as bladder training) in reducing UI, but their effectiveness has not been demonstrated with stroke patients. METHODS: We conducted a cluster randomised controlled feasibility trial of a systematic voiding programme (SVP) for the management of UI after stroke. Stroke services were randomised to receive SVP (n = 4), SVP plus supported implementation (SVP+, n = 4), or usual care (UC, n = 4).Feasibility outcomes were participant recruitment and retention. The main effectiveness outcome was presence or absence of UI at six and 12 weeks post-stroke. Additional effectiveness outcomes included were the effect of the intervention on different types of UI, continence status at discharge, UI severity, functional ability, quality of life, and death. RESULTS: It was possible to recruit patients (413; 164 SVP, 125 SVP+, and 124 UC) and participant retention was acceptable (85% and 88% at six and 12 weeks, respectively). There was no suggestion of a beneficial effect on the main outcome at six (SVP versus UC: odds ratio (OR) 0.94, 95% CI: 0.46 to 1.94; SVP+ versus UC: OR: 0.62, 95% CI: 0.28 to 1.37) or 12 weeks (SVP versus UC: OR: 1.02, 95% CI: 0.54 to 1.93; SVP+ versus UC: OR: 1.06, 95% CI: 0.54 to 2.09).No secondary outcomes showed a strong suggestion of clinically meaningful improvement in SVP and/or SVP+ arms relative to UC at six or 12 weeks. However, at 12 weeks both intervention arms had higher estimated odds of continence than UC for patients with urge incontinence. CONCLUSIONS: The trial has met feasibility outcomes of participant recruitment and retention. It was not powered to demonstrate effectiveness, but there is some evidence of a potential reduction in the odds of specific types of incontinence. A full trial should now be considered. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN08609907, date of registration: 7 July 2010.

Cost effectiveness of a web-based decision aid for parents deciding about MMR vaccination: a three-arm cluster randomised controlled trial in primary care.

BACKGROUND: Levels of measles in England and Wales are at their highest for 18 years, and strategies targeting the different groups of parents who do not vaccinate their children continue to be needed. Decision aids for decisions regarding childhood immunisation appear to be effective in achieving an increase in vaccine uptake but their cost effectiveness is unknown. AIM: To assess the cost effectiveness of a web-based decision aid to increase uptake of the MMR vaccine. DESIGN AND SETTING: Economic evaluation conducted alongside a cluster randomised controlled trial using urban GP practices in the north of England. METHOD: Fifty GP practices in the north of England were randomised to one of three trial arms: decision aid, leaflet, usual practice. A total of 220 first-time parents (child aged 3-12 months) were recruited. Parents self-reported their contacts with the NHS and other previous/expected resource utilisation; associated costs were calculated. Vaccine-uptake data were collected from GP practices. A cost-effectiveness analysis was undertaken and provided the incremental cost per first-vaccine uptake. Multiple imputation was used to account for missing data and findings were adjusted for baseline differences in parents' levels of decisional conflict regarding MMR vaccination. RESULTS: Of the 220 first-time parents recruited to the study, 179 completed the baseline and post-intervention questionnaires. MMR uptake was highest for those receiving the decision aid (42 out of 42, 100%) versus usual practice (61 out of 62, 98%) and leaflet arm (69 out of 75, 92%), and was associated with lower cost (-£9.20 versus usual practice and -£7.17 versus leaflet). CONCLUSION: The decision aid has a high chance of being cost effective, regardless of the value placed on obtaining additional vaccinations. It also appears to offer an efficient means of decision support for parents.