A review of family carers' experiences of hospital discharge for people with dementia and the rationale for involving service users in health research

Abstract: In the UK, service user involvement is an important factor in health policy, and obtaining research funding. It may be helpful in expanding our knowledge in areas where research evidence is poor such as experiences of hospital discharge planning for the family carers of people with dementia. Methods: A rapid review. All study designs published in the English language were eligible for inclusion. Databases included: Medline, Embase, CINAHL, PsycInfo, Cochrane library and Web of Knowledge. A qualitative analysis was undertaken. Results: Four themes were identified: preparation for hospital discharge – dissatisfaction with being kept informed, discharge arrangements and management of conditions; little time to prepare. Communication between staff and families at discharge – insufficient communication regarding services, not being listened to and being undervalued as a resource could compromise post-discharge care. Support services post discharge – carers need help negotiating, and working with, services with regard to timing, and meeting requirements. Coping post hospital discharge – inadequate understanding about ability to cope, and patient's impairment, and family conflict over care may lead to unnecessary re-admission to hospital, or long term care. Evidence of specialist dementia models at discharge is described. Discussion: Carers are not always involved in hospital discharge planning as well as they might be. Issues are complex and depend on a number of factors. Poor communication can be overcome and carers can be better supported to cope post discharge as illustrated in the dementia models. The evidence base is weak but the absence of evidence does not indicate an absence of good practice. Conclusion: Carers who may feel their world is far removed from the academic world may not ordinarily participate in research studies. Service users, as co-researchers, may be able to improve trust and rapport between research and communities, collect fresh insights and gain deeper and more insightful data from participants

Role of home visiting in improving parenting and health in families at risk of abuse and neglect : results of a multicentre randomised controlled trial and economic evaluation

Objectives – To evaluate the effectiveness and cost-effectiveness of an intensive home visiting programme in improving outcomes for vulnerable families. Design – Multicentre randomised controlled trial in which eligible women were allocated to receive home visiting (n=67) or standard services (n=64). Incremental cost analysis. Setting – 40 GP practices across two counties in the UK Participants – 131 vulnerable pregnant women. Intervention: Selected health visitors were trained in the Family Partnership Model to provide a weekly home visiting service from 6-months antenatally to 12 months postnatally. Main outcome measures – mother-child interaction, maternal psychological health attitudes and behaviour, infant functioning and development, and risk of neglect or abuse. Results – At 12-months differences favouring the home visited group were observed on an independent assessment of maternal sensitivity (p<0.04) and infant cooperativeness (p<0.02). No differences were identified on any other measures. There was a non-significant increase in the likelihood of intervention group infants being the subject of child protection proceedings, or being removed from the home, and one death in the control group. The mean incremental cost per infant of the home visiting intervention was £3,246 (bootstrapped 95% confidence interval for the difference: £1,645 - £4,803). Conclusion – This intervention may have the potential to improve parenting and increase the identification of infants at risk of abuse and neglect in vulnerable families. Further investigation is needed together with long term follow up to assess possible sleeper effects

Impact of a general practice based group parenting programme on the mental health of children and parents 12 months post intervention : quantitative and qualitative results from a controlled trial

Objective To test the effectiveness at one year of the Webster Stratton Parents and Children Series group parenting programme in a population sample of parents Design multicentre block randomised controlled trial Setting 3 urban General Practices in Oxford. Participants Parents of children aged 2-8 years in 116 families who scored in the upper 50% on a behaviour inventory. Intervention Webster-Stratton’s 10-week parenting programme led by health visitors. Outcome measures. Eyberg Child Behaviour Inventory, Goodman Strengths and Difficulties Questionnaire, General Health Questionnaire, Parenting Stress Index, Rosenberg Self Esteem Scale. Qualitative interviews with volunteer parents from both intervention and control groups immediately post intervention. Results The intervention significantly reduced child behaviour problems and improved mental health at immediate and 6-month follow-ups. One-year differences between control and intervention groups were not significant. Possible methodological reasons for this are: Hawthorne effects and contamination of control group. At interview parents spoke of a need for further sessions and a desire for attendance by both parents. They also described how, as a result of the programme, they had gained in confidence, felt less stressed, shouted less and achieved more cooperation from their children. Conclusions Parenting programmes have the potential to promote mental health and reduce social inequalities, but further work is needed to improve long-term effectiveness

Experiences of in-patient mental health services: systematic review

Background In-patients in crisis report poor experiences of mental healthcare not conducive to recovery. Concerns include coercion by staff, fear of assault from other patients, lack of therapeutic opportunities and limited support. There is little high-quality evidence on what is important to patients to inform recovery-focused care.Aims To conduct a systematic review of published literature, identifying key themes for improving experiences of in-patient mental healthcare.Method A systematic search of online databases (MEDLINE, PsycINFO and CINAHL) for primary research published between January 2000 and January 2016. All study designs from all countries were eligible. A qualitative analysis was undertaken and study quality was appraised. A patient and public reference group contributed to the review.Results Studies (72) from 16 countries found four dimensions were consistently related to significantly influencing in-patients' experiences of crisis and recovery-focused care: the importance of high-quality relationships; averting negative experiences of coercion; a healthy, safe and enabling physical and social environment; and authentic experiences of patient-centred care. Critical elements for patients were trust, respect, safe wards, information and explanation about clinical decisions, therapeutic activities, and family inclusion in care.Conclusions A number of experiences hinder recovery-focused care and must be addressed with the involvement of staff to provide high-quality in-patient services. Future evaluations of service quality and development of practice guidance should embed these four dimensions.Declaration of interest K.B. is editor of British Journal of Psychiatry and leads a national programme (Synergi Collaborative Centre) on patient experiences driving change in services and inequalities

Using patient experience data to support improvements in inpatient mental health care: the EURIPIDES multimethod study

Background All NHS providers collect data on patient experience, although there is limited evidence about what to measure or how to collect and use data to improve services. We studied inpatient mental health services, as these are important, costly and often unpopular services within which serious incidents occur. Aims To identify which approaches to collecting and using patient experience data are most useful for supporting improvements in inpatient mental health care. Design The study comprised five work packages: a systematic review to identify evidence-based patient experience themes relevant to inpatient mental health care (work package 1); a survey of patient experience leads in NHS mental health trusts in England to describe current approaches to collecting and using patient experience data in inpatient mental health services, and to populate the sampling frame for work package 3 (work package 2); in-depth case studies at sites selected using the work package 2 findings, analysed using a realist approach (work package 3); a consensus conference to agree on recommendations about best practice (work package 4); and health economic modelling to estimate resource requirements and potential benefits arising from the adoption of best practice (work package 5). Using a realist methodology, we analysed and presented our findings using a framework based on four stages of the patient experience data pathway, for which we coined the term CRAICh (collecting and giving, receiving and listening, analysing, and quality improvement and change). The project was supported by a patient and public involvement team that contributed to work package 1 and the development of programme theories (work package 3). Two employed survivor researchers worked on work packages 2, 3 and 4. Setting The study was conducted in 57 NHS providers of inpatient mental health care in England. Participants In work package 2, 47 NHS patient experience leads took part and, in work package 3, 62 service users, 19 carers and 101 NHS staff participated, across six trusts. Forty-four individuals attended the work package 4 consensus conference. Results The patient experience feedback cycle was rarely completed and, even when improvements were implemented, these tended to be environmental rather than cultural. There were few examples of triangulation with patient safety or outcomes data. We identified 18 rules for best practice in collecting and using inpatient mental health experience data, and 154 realist context–mechanism–outcome configurations that underpin and explain these. Limitations The study was cross-sectional in design and we relied on examples of historical service improvement. Our health economic models (in work package 5) were therefore limited in the estimation and modelling of prospective benefits associated with the collection and use of patient experience data. Conclusions Patient experience work is insufficiently embedded in most mental health trusts. More attention to analysis and interpretation of patient experience data is needed, particularly to ways of triangulating these with outcomes and safety data. Future work Further evaluative research is needed to develop and evaluate a locally adapted intervention based on the 18 rules for best practice. Study registration The systematic review (work package 1) is registered as PROSPERO CRD42016033556

Facilitating implementation of research evidence (FIRE): A randomised controlled trial and process evaluation of two models of facilitation informed by the promoting action on research implementation in health services (PARIHS) framework

Background: The PARIHS framework proposes that successful implementation of research evidence results from the complex interplay between the evidence to be implemented, the context of implementation and the facilitation processes employed. Facilitation is defined as a role (the facilitator) and a process (facilitation strategies/methods). Empirical evidence comparing different facilitation approaches is limited; this paper reports a trial of two different types of facilitation represented in the PARIHS framework. Methods: A pragmatic cluster randomised controlled trial with embedded process evaluation was undertaken in 24 long-term nursing care settings in four European countries. In each country, sites were randomly allocated to standard dissemination of urinary incontinence guideline recommendations and one of two types of external-internal facilitation, labelled Type A and B. Type A facilitation was a less resource intensive approach, underpinned by improvement methodology; Type B was a more intensive, emancipatory model of facilitation, informed by critical social science. The primary outcome was percentage documented compliance with guideline recommendations. Process evaluation was framed by realist methodology and involved quantitative and qualitative data collection from multiple sources. Findings: Quantitative data were obtained from reviews of 2313 records. Qualitative data included over 332 hours of observations of care; 39 hours observation of facilitation activity; 471 staff interviews; 174 resident interviews; 120 next of kin/carer interviews; and 125 stakeholder interviews. There were no significant differences in the primary outcome between study arms and all study arms improved over time. Process data revealed three core mechanisms that influenced the trajectory of the facilitation intervention: alignment of the facilitation approach to the needs and expectations of the internal facilitator and colleagues; engagement of internal facilitators and staff in attitude and action; and learning over time. Data from external facilitators demonstrated that the facilitation interventions did not work as planned, issues were cumulative and maintenance of fidelity was problematic. Implications for D&I Research: Evaluating an intervention - in this case facilitation - that is fluid and dynamic within the methodology of a randomised controlled trial is complex and challenging. For future studies, we suggest a theoretical approach to fidelity, with a focus on mechanisms, as opposed to dose and intensity of the intervention

FIRE (facilitating implementation of research evidence) : a study protocol

Research evidence underpins best practice, but is not always used in healthcare. The Promoting Action on Research Implementation in Health Services (PARIHS) framework suggests that the nature of evidence, the context in which it is used, and whether those trying to use evidence are helped (or facilitated) affect the use of evidence. Urinary incontinence has a major effect on quality of life of older people, has a high prevalence, and is a key priority within European health and social care policy. Improving continence care has the potential to improve the quality of life for older people and reduce the costs associated with providing incontinence aids

Motor Neurone Disease: Assessment of Carer Burden and Experiences of Service Provision - The Development of a Questionnaire

Motor Neurone Disease (MND) is a life threatening, neurodegenerative disease for which there is no known cure. As the patient becomes increasingly disabled and subsequently dependent on others, responsibility often falls to close friends and relatives to care for them at home. The health of the carer is often at risk due to long hours of caring and the nature of the work involved.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Parenting programmes : some unintended consequences

This paper describes a number of themes that emerged from a qualitative research study into the effects of a parenting programme on family life (Mockford, 2000). Existing research points to many valuable outcomes of parenting programmes including improved maternal psychosocial health (Barlow and Coren, 2000), improved relationships (Grimshaw and McGuire, 1998; Smith, 1997) and reduced child behaviour problems (Barlow, 1999; Patterson et al., 1993; 2002b). There has, however, been little qualitative work undertaken with parents who have attended a parenting programme. The findings from this study show that in addition to many positive consequences, there were a number of unintended consequences of attending a parenting programme. In particular, women spoke of the difficulties that they faced at home when trying to apply the techniques that they had learned on the parenting programme. These difficulties included gaining the support of partners in implementing the techniques learned, changing their established habits and those of their partners, finding the time to parent together, and incorporating the techniques into their already busy lives. These findings also suggest that a change in one parent’s approach to parenting may result in increased discrepancies in parenting techniques between the parent who attended the programme and the parent who did not, and that this may result in parental conflict

Recommendations to support informal carers of people living with motor neurone disease

Informal carers are increasingly providing specialist care at home for people living with motor neurone disease. The carers may experience significant deterioration in their quality of life as a result of the physical and psychological burden they undertake. This systematic review seeks to provide evidence-based recommendations to enable healthcare professionals to support carers appropriately to maintain their wellbeing and to continue providing care at home. Inclusion criteria included articles focusing on the experience of informal carers of people with motor neurone disease, particularly when reporting on their perspective of professional services. Twenty-three studies were included and a thematic analysis was undertaken. Four key recommendations were identified: providing support, early access to palliative care, information regarding availability of services, and offering carers training for using specialist equipment. These recommendations offer healthcare professionals practical, cost-effective suggestions to improve existing services