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1.
JMIR Form Res ; 8: e52389, 2024 May 22.
Article En | MEDLINE | ID: mdl-38776139

BACKGROUND: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. OBJECTIVE: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. METHODS: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. RESULTS: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. CONCLUSIONS: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. TRIAL REGISTRATION: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

2.
BMJ Open ; 13(2): e064482, 2023 02 03.
Article En | MEDLINE | ID: mdl-36737086

OBJECTIVES: To determine how, and under what circumstances, the PERFECT-ER intervention was implemented in five acute hospital wards and impacted on staff practices and perceptions. DESIGN: Mixed methods process evaluation (undertaken between 2016 and 2018). SETTING: Five acute hospital wards across three different UK regions. PARTICIPANTS: Patients (n=3) admitted to acute wards with hip fracture and cognitive impairment, their relatives (n=29) and hospital staff (n=63). INTERVENTIONS: PERFECT-ER, a multicomponent intervention designed to enhance the recovery of patients with hip fracture and cognitive impairment was implemented for 18 months. PERFECT-ER was implemented at ward level ensuring that multiple new and existing practices were undertaken consistently, on the assumption that collectively, small individual advances would improve care delivery for patients. PRIMARY AND SECONDARY OUTCOME MEASURES: Implementation of the PERFECT-ER intervention examined through regular intervention scores, service improvement staff reports and action plans, and semi-structured interviews and focus groups. RESULTS: The process evaluation identified points of implementation vulnerability and strength. All wards implemented some elements of PERFECT-ER. Implementation was fragile when ward pressures were high and when ward staff perceived the relative priority of intervention practices to be low. Adaptations to the implementation process may have reduced whole-ward staff engagement with implementation. However, strategical enlistment of senior ward influencers (such as ward managers, orthogeriatricians) combined with service improvement lead in-ward peer pressure tactics facilitated implementation processes. CONCLUSIONS: Our study suggests that implementation was expediated when senior staff were on board as opinion leaders and formally appointed internal implementation leaders exerted their power. Within hierarchical settings such as acute wards, key individuals appeared to influence implementation through endorsement and sometimes enforcement. This indicates that whole-ward interventions may not always require cognitive engagement from all ward staff to implement changes. Future ward-level implementation studies could consider how best to engage staff and most importantly, which staff to best target. TRIAL REGISTRATION NUMBER: ISRCTN99336264.


Cognitive Dysfunction , Hip Fractures , Humans , Feasibility Studies , Hip Fractures/therapy , Hospitalization , Hospitals , Cognitive Dysfunction/therapy
3.
PLoS One ; 18(2): e0279651, 2023.
Article En | MEDLINE | ID: mdl-36827424

BACKGROUND: Delivering care to growing numbers of patients with increasingly 'complex' needs is currently compromised by a system designed to treat patients within organizational clinical specialties, making this difficult to reconfigure to fit care to needs. Problematic experiences of people with cognitive impairment(s) admitted to hospitals with a hip fracture, exemplify the complex challenges that result if their care is not tailored. This study explored whether a flexible, multicomponent intervention, adapting services to the needs of this patient group, could be implemented in acute hospital settings. METHODS: We used action research with case study design to introduce the intervention using a Plan-Do-Study-Act (PDSA) model to three different hospital sites (cases) across England. The qualitative data for this paper was researcher-generated (notes from observations and teleconference meetings) and change agent-generated (action plans and weekly reflective reports of change agents' activities). Normalization Process Theory (NPT) was used to analyze and explain the work of interacting actors in implementing and then normalizing (embedding) the intervention across contexts and times. Data analysis was abductive, generating inductive codes then identified with NPT constructs. Across the three cases, change agents had to work through numerous implementation challenges: needing to make sense of the intervention package, the PDSA model as implementation method, and their own role as change agents and to orientate these within their action context (coherence). They had to work to encourage colleagues to invest in these changes (cognitive participation) and find ways to implement the intervention by mobilising changes (collective action). Finally, they created strategies for clinical routines to continue to self-review, reconfiguring actions and future plans to enable the intervention to be sustained (reflexive monitoring). CONCLUSIONS: Successful implementation of the (PERFECT-ER) intervention requires change agents to recognize and engage with local values, and then to enable its fit with practice and wider contextual goals. A context of constant change fragments normalization. Thus, sustaining practice change over time is fragile and requires change agents to continue a recursive two-way sense-making process. This enables implementation and normalization to re-energize and overcome barriers to change.


Hip Fractures , Orthopedics , Humans , Qualitative Research , England , Hospitals
4.
Pilot Feasibility Stud ; 9(1): 2, 2023 Jan 09.
Article En | MEDLINE | ID: mdl-36624509

BACKGROUND: In the UK, one third of people with dementia live in residential care homes, a sector where high staff turnover negatively affects continuity of care. To examine the effect of including personhood and citizenship principles in training, interventions need to be robustly tested, with outcomes relevant to residents with dementia. METHODS: Phase one intervention development: The training intervention (PERSONABLE) comprised five reflective exercises facilitated by a mental health nurse/researcher. PERSONABLE was informed by four focus groups, and one field exercise, consisting of care home staff and family members. Phase two feasibility testing: Participants were (i) care home residents with dementia and (ii) care home staff working in any role. After baseline measurements, care homes were randomly allocated to (i) staff receiving PERSONABLE training or (ii) training as usual. Feasibility outcomes were the recruitment and attrition of care homes, residents and staff members (measured ten weeks between randomisation and follow-up), the acceptability of the training intervention PERSONABLE, and acceptability of outcome measures. The care home environment was evaluated, at baseline, using the Therapeutic Environment Screening Survey for Residential Care Homes. Measurements conducted at baseline and follow-up were resident wellbeing (Dementia Care Mapping™), staff knowledge of and confidence with personhood and citizenship (Personhood in Dementia Questionnaire and a perceived ability to care visual analogue scale). Inter-rater agreement for Dementia Care Mapping™ was undertaken at follow-up in one intervention and one training as a usual care home. RESULTS: Phase one: The developed reflective approach to the PERSONABLE exercises appeared to give staff a holistic understanding of residents living with dementia, seeing them as autonomous people rather than reductively as persons with a condition. Phase two: Six care homes, 40 residents and 118 staff were recruited. Four residents were lost to follow-up. Twenty-nine staff in the PERSONABLE arm of the study received the training intervention. In the PERSONABLE arm, 26 staff completed both baseline and follow-up measurements compared to 21 in the training as the usual arm. The most common reason for the loss to follow-up of staff was leaving employment. For the outcome measure Dementia Care Mapping™, the proportion of overall agreement between the two observers was 18.6%. High attrition of staff occurred in those homes undergoing leadership changes. CONCLUSION: With the right approach, it is possible to achieve good engagement during trial recruitment and intervention delivery of care home managers, staff and residents. Organisational changes are a less controllable aspect of trials but having a visible researcher presence during data collection helps to capitalise the engagement of those staff remaining in employment. Tailored, brief and flexible training interventions encourage staff participation. Simplification of study methods helps promote and retain sufficient staff in a definitive randomised controlled trial. This study found that some components of Dementia Care Mapping™ work effectively as an outcome measure. However, inter-rater reliability was poor, and the practical implementation of the measurement would need a great deal of further refinement to accurately capture the effect of a training intervention if delivered across a large number of clusters. The Dementia Care Mapping™ measurement fidelity issue would be further complicated if using multiple different unacquainted observers. TRIAL REGISTRATION: Registered with the ISRCTN under the title: Does a dementia workshop, delivered to residential care home staff, improve the wellbeing of residents with dementia? Trial identifier: ISRCTN13641553. Registered: 30/05/2017 http://www.isrctn.com/ISRCTN13641553 .

5.
BMJ Open ; 12(2): e055267, 2022 Feb 28.
Article En | MEDLINE | ID: mdl-35228288

OBJECTIVES: Assess feasibility of a cluster randomised controlled trial (RCT) to measure clinical and cost-effectiveness of an enhanced recovery pathway for people with hip fracture and cognitive impairment (CI). DESIGN: Feasibility trial undertaken between 2016 and 2018. SETTING: Eleven acute hospitals from three UK regions. PARTICIPANTS: 284 participants (208 female:69 male). INCLUSION CRITERIA: aged >60 years, confirmed proximal hip fracture requiring surgical fixation and CI; preoperative AMTS ≤8 in England or a 4AT score ≥1 in Scotland; minimum of 5 days on study ward; a 'suitable informant' able to provide proxy measures, recruited within 7 days of hip fracture surgery. EXCLUSION CRITERIA: no hip surgery; not expected to survive beyond 4 weeks; already enrolled in a clinical trial. INTERVENTION: PERFECT-ER, an enhanced recovery pathway with 15 quality targets supported by a checklist and manual, a service improvement lead a process lead and implemented using a plan-do-study-act model. PRIMARY AND SECONDARY OUTCOME MEASURES: Feasibility outcomes: recruitment and attrition, intervention acceptability, completion of participant reported outcome measures, preliminary estimates of potential effectiveness using mortality, EQ-5D-5L, economic and clinical outcome scores. RESULTS: 282 participants were consented and recruited (132, intervention) from a target of 400. Mean recruitment rates were the same in intervention and control sites, (range: 1.2 and 2.7 participants/month). Retention was 230 (86%) at 1 month and 54%(144) at 6 months. At 3 months a relatively small effect (one quarter of an SD) was observed on health-related quality of life of the patient measured with EQ-5D-5L proxy in the intervention group. CONCLUSION: This trial design was feasible with modifications to recruitment. Mechanisms for delivering consistency in the PERFECT-ER intervention and participant retention need to be addressed. However, an RCT may be a suboptimal research design to evaluate this intervention due to the complexity of caring for people with CI after hip fracture. TRIAL REGISTRATION NUMBER: ISRCTN99336264.


Cognitive Dysfunction , Hip Fractures , Cost-Benefit Analysis , Feasibility Studies , Female , Hip Fractures/surgery , Hospitals , Humans , Male , Quality of Life
6.
Campbell Syst Rev ; 18(2): e1227, 2022 Jun.
Article En | MEDLINE | ID: mdl-36911355

This is the protocol for a Campbell systematic review. The objectives are as follows: to produce a mega-map which identifies, maps and provides a visual interactive display, based on systematic reviews on all the main aspects of elder abuse in both the community and in institutions, such as residential and long-term care institutions.

7.
Arch Gerontol Geriatr ; 90: 104176, 2020.
Article En | MEDLINE | ID: mdl-32652367

PURPOSE: To determine the effectiveness of hospital-based interventions designed to reduce Hospital-Associated Deconditioning (HAD) for people in inpatient hospital settings. MATERIALS & METHODS: Systematic literature search of published and unpublished databases was conducted from (inception to 01 June 2020). Randomised and non-randomised controlled trials investigating the effectiveness of enhanced inpatient programmes aimed to reduce HAD in adults admitted to a hospital ward were included. Evidence was appraised using the Cochrane Risk of Bias tool and outcomes evaluated against the GRADE criteria. Where appropriate, data were pooled in meta-analyses and presented as risk difference (RD) or standardised mean difference with 95 % confidence intervals (CI). RESULTS: Seven studies recruiting 12,597 participants (7864 enhanced programmes; 4349 usual care) were included. There was low-quality evidence for reduced risk of decline in physical performance for those in the enhanced programmes compared to usual care (RD: -0.04; 95 % CI: -0.08 to -0.01; N = 2085). There was low- or very-low quality evidence reporting no benefit of enhanced programmes for mobility on discharge, length of hospital stay, hospital readmission, and mortality within the first three-months post-admission (p > 0.05). There was low-quality evidence that nursing home placement and mortality at 12-months was superior through enhanced inpatient programmes compared to usual care. CONCLUSION: Enhanced inpatient programmes targeted at HAD may offer benefit over usual care for some outcomes. There remain uncertainty in relation to how applicable the findings are to non-North American countries, which elements of an enhanced programme are most important to reduce HAD, and longer-term sequelae.


Hospitalization , Patient Discharge , Hospitals , Humans , Length of Stay , Patient Readmission
8.
Sociol Health Illn ; 42(5): 1139-1154, 2020 06.
Article En | MEDLINE | ID: mdl-32291780

Within health and social care, academic attention is increasingly paid to understanding the nature and centrality of body work. Relatively little is known about how and where body work specifically fits into the wider work relations that produce it in healthcare settings. We draw on ethnographic observations of staff practice in three National Health Service acute hospital wards in the United Kingdom to make visible the micro-processes of patient care sequences including both body work and the work contextualising and supporting it. Our data, produced in 2015, show body work interactions in acute care to be critically embedded within a context of initiating, preparing, moving and restoring and proceeding. Shades of privacy and objectification of the body are present throughout these sequences. While accomplishing tasks away from the physical body, staff members must also maintain physical and cognitive work focussed on producing body work. Thus, patient care is necessarily complex, requiring much staff time and energy to deliver it. We argue that by making visible the micro-processes that hospital patient care depends on, including both body work and the work sequences supporting it, the complex physical and cognitive workload required to deliver care can be better recognised. (A virtual version of this abstract is available at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).


Orthopedics , State Medicine , Anthropology, Cultural , Delivery of Health Care , Hospitals , Humans
9.
Gerontologist ; 59(4): 610-618, 2019 07 16.
Article En | MEDLINE | ID: mdl-29584865

BACKGROUND AND OBJECTIVES: There is very little information about the appropriateness of procedures for admitting older people into care homes in low and middle-income countries like Argentina. This study provides the first systematic study of practice and assesses the extent to which current practice respects fundamental human rights. RESEARCH DESIGN AND METHODS: We apply different methods, including document review and national survey analysis. The study also includes a case study of a single city, La Plata, which draws on local key informant interviews, focus group discussions in different neighborhoods, and a clandestine surrogate patient survey led by local pensioners. This innovative design provides a highly triangulated and contextualized data set. RESULTS: Many older people admitted to care homes did not have high levels of care dependency. Care homes did not usually require or even seek the informed consent of older people, regardless of their cognitive status. There were indications of coercive admission by family members, sometimes in order to obtain access to older people's homes and other property and finances. DISCUSSION AND IMPLICATIONS: The study indicates the widespread abuse of the fundamental human rights of tens of thousands of older people in Argentina. There is a need for researchers, policy-makers, and civil society to acknowledge the scale of abuse and develop safeguards.


Coercion , Elder Abuse , Family , Homes for the Aged/standards , Human Rights Abuses , Activities of Daily Living , Aged , Argentina , Focus Groups , Homes for the Aged/ethics , Humans , Informed Consent , Long-Term Care , Quality of Health Care , Surveys and Questionnaires
11.
Curr Alzheimer Res ; 15(1): 5-17, 2018.
Article En | MEDLINE | ID: mdl-28891442

BACKGROUND: Primary care services frequently provide the initial contact between people with dementia and health service providers. Early diagnosis and screening programmes have been suggested as a possible strategy to improve the identification of such individuals and treatment and planning health and social care support. OBJECTIVE: To determine what early diagnostic and screening programmes have been adopted in primary care practice, to explore who should deliver these and to determine the possible positive and negative effects of an early diagnostic and screening programme for people with dementia in primary care. METHODS: A systematic review of the literature was undertaken using published and unpublished research databases. All papers answering our research objectives were included. A narrative analysis of the literature was undertaken, with the CASP tools used appropriately to assess study quality. RESULTS: Thirty-three papers were identified of moderate to high quality. The limited therapeutic options for those diagnosed with dementia means that even if such a programme was instigated, the clinical value remains questionable. Furthermore, accuracy of the diagnosis remains difficult to assess due to poor evidence and this raises questions regarding whether people could be over- or under-diagnosed. Given the negative social and psychological consequences of such a diagnosis, this could be devastating for individuals. CONCLUSION: Early diagnostic and screening programmes have not been widely adopted into primary care. Until there is rigorous evidence assessing the clinical and cost-effectiveness of such programmes, there remains insufficient evidence to support the adoption of these programmes in practice.


Dementia/diagnosis , Primary Health Care/methods , Early Diagnosis , Humans , Patient Care Team
12.
Trials ; 18(1): 583, 2017 Dec 04.
Article En | MEDLINE | ID: mdl-29202786

BACKGROUND: Health and social care provision for an ageing population is a global priority. Provision for those with dementia and hip fracture has specific and growing importance. Older people who break their hip are recognised as exceptionally vulnerable to experiencing confusion (including but not exclusively, dementia and/or delirium and/or cognitive impairment(s)) before, during or after acute admissions. Older people experiencing hip fracture and confusion risk serious complications, linked to delayed recovery and higher mortality post-operatively. Specific care pathways acknowledging the differences in patient presentation and care needs are proposed to improve clinical and process outcomes. METHODS: This protocol describes a multi-centre, feasibility, cluster-randomised, controlled trial (CRCT) to be undertaken across ten National Health Service hospital trusts in the UK. The trial will explore the feasibility of undertaking a CRCT comparing the multicomponent PERFECTED enhanced recovery intervention (PERFECT-ER), which acknowledges the differences in care needs of confused older patients experiencing hip fracture, with standard care. The trial will also have an integrated process evaluation to explore how PERFECT-ER is implemented and interacts with the local context. The study will recruit 400 hip fracture patients identified as experiencing confusion and will also recruit "suitable informants" (individuals in regular contact with participants who will complete proxy measures). We will also recruit NHS professionals for the process evaluation. This mixed methods design will produce data to inform a definitive evaluation of the intervention via a large-scale pragmatic randomised controlled trial (RCT). DISCUSSION: The trial will provide a preliminary estimate of potential efficacy of PERFECT-ER versus standard care; assess service delivery variation, inform primary and secondary outcome selection, generate estimates of recruitment and retention rates, data collection difficulties, and completeness of outcome data and provide an indication of potential economic benefits. The process evaluation will enhance knowledge of implementation delivery and receipt. TRIAL REGISTRATION: ISRCTN, 99336264 . Registered on 5 September 2016.


Checklist , Confusion/therapy , Delivery of Health Care, Integrated/organization & administration , Geriatrics/organization & administration , Hip Fractures/therapy , Clinical Protocols , Confusion/diagnosis , Confusion/psychology , Feasibility Studies , Hip Fractures/diagnosis , Hip Fractures/physiopathology , Humans , Recovery of Function , Research Design , State Medicine/organization & administration , Time Factors , Treatment Outcome , United Kingdom
13.
Women Birth ; 30(4): e179-e187, 2017 Aug.
Article En | MEDLINE | ID: mdl-28057430

BACKGROUND/OBJECTIVES: British public health and academic policy and guidance promotes service user involvement in health care and research, however collaborative research remains underrepresented in literature relating to pregnant women's mental health. The aim of this participatory research was to explore mothers' and professionals' perspectives on the factors that influence pregnant women's mental health. METHOD: This qualitative research was undertaken in England with the involvement of three community members who had firsthand experience of mental health problems during pregnancy. All members of the team were involved in study design, recruitment, data generation and different stages of thematic analysis. Data were transcribed for individual and group discussions with 17 women who self-identified as experiencing mental health problems during pregnancy and 15 professionals who work with this group. Means of establishing trustworthiness included triangulation, researcher reflexivity, peer debriefing and comprehensive data analysis. FINDINGS: Significant areas of commonality were identified between mothers' and professionals' perspectives on factors that undermine women's mental health during pregnancy and what is needed to support women's mental health. Analysis of data is provided with particular reference to contexts of relational, systemic and ecological conditions in women's lives. CONCLUSIONS: Women's mental health is predominantly undermined or supported by relational, experiential and material factors. The local context of socio-economic deprivation is a significant influence on women's mental health and service requirements.


Health Status , Mental Health , Mothers/psychology , Pregnant Women/psychology , Women's Health , Adult , England , Female , Humans , Poverty , Pregnancy , Qualitative Research
14.
J Med Ethics ; 43(1): 60-62, 2017 01.
Article En | MEDLINE | ID: mdl-27974422

The concluding statement of the Burns Commission, established to evaluate whether changes are needed to the Freedom of Information Act (FOIA), ruled no major legislative changes were required. As such Freedom of Information (FOI) legislation still enables anyone to obtain information from public authorities. In this brief report article we explore arguments regarding FOI as an instrument for healthcare research using an international research programme as a case study.


Access to Information/legislation & jurisprudence , Biomedical Research/legislation & jurisprudence , Confidentiality , Ethical Analysis , Ethics, Medical , Information Dissemination/legislation & jurisprudence , Privacy , Biomedical Research/ethics , Coercion , Confidentiality/ethics , Confidentiality/legislation & jurisprudence , Cost-Benefit Analysis , Health Services Research/ethics , Health Services Research/legislation & jurisprudence , Humans , Privacy/legislation & jurisprudence , State Medicine , United Kingdom
15.
J Women Aging ; 28(6): 540-554, 2016.
Article En | MEDLINE | ID: mdl-27749201

This article examines the ecological risk factors of abuse against older women. Data from 2,880 older women were randomly collected in five European countries (Austria, Belgium, Finland, Lithuania, and Portugal) using a standardized questionnaire. Results indicate that overall 30.1 % older women had at least one experience of abuse in the past year. The findings demonstrate that a single emphasis on personal risk factors (e.g., health, coping) is important but too simple: Abuse is multifaceted and is embedded in environmental (e.g., loneliness, household income) as well as macrocultural contexts (e.g., old age dependency ratio).


Elder Abuse/statistics & numerical data , Adaptation, Psychological , Aged , Aged, 80 and over , Austria , Belgium , Environment , Female , Finland , Health Status , Housing , Humans , Lithuania , Middle Aged , Portugal , Risk Factors , Socioeconomic Factors , Surveys and Questionnaires
16.
Age Ageing ; 45(6): 856-863, 2016 11.
Article En | MEDLINE | ID: mdl-27543054

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.


Behavior Control/methods , Dementia/therapy , Homes for the Aged , Nursing Homes , Activities of Daily Living , Anthropology, Cultural , Attitude of Health Personnel , Dementia/diagnosis , Dementia/ethnology , Dementia/psychology , Health Knowledge, Attitudes, Practice , Health Personnel/education , Humans , Inservice Training , Interviews as Topic , Qualitative Research , Quality of Life , Social Behavior , Treatment Outcome , Workforce
17.
Age Ageing ; 45(3): 337-45, 2016 05.
Article En | MEDLINE | ID: mdl-26790454

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 to September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers. RESULTS: nineteen 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 and (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.


Homes for the Aged/organization & administration , Nursing Homes/organization & administration , Patient Participation/psychology , Patient Participation/statistics & numerical data , Quality of Life , Aged , Aged, 80 and over , Female , Health Services Research , Humans , Internationality , Male , Organizational Innovation , Outcome Assessment, Health Care , Quality Improvement
18.
Res Aging ; 37(1): 63-81, 2015 Jan.
Article En | MEDLINE | ID: mdl-25651551

Detection of elder abuse risk is a critical issue because a lot of cases remain hidden. Screening tools can be used to detect elder abuse. However, few tools have been developed for use with caregivers. The purpose was to develop a translation and adaptation of a Spanish version of the Caregiver Abuse Screen (CASE) and to assess its validity and reliability. The CASE was then used with 211 primary caregivers. Validity and reliability were evaluated, as well as the factorial structure of the instrument. This version showed good psychometric properties. It was found to have strong internal consistency and split-half reliability as well as allowing for a good replication of the original factorial structure. Additionally, several variables related to elder abuse were linked to the CASE such as depression, burden, frequency, and reactions to problem behaviors. The version developed showed sufficient validity and reliability and could be considered as a suitable instrument to assess risks of elder abuse in a Spanish-speaking context.


Elder Abuse/diagnosis , Psychometrics/standards , Surveys and Questionnaires/standards , Adult , Aged , Aged, 80 and over , Caregivers/psychology , Female , Humans , Male , Middle Aged , Psychometrics/methods , Reproducibility of Results , Spain
19.
J Interpers Violence ; 30(17): 3089-111, 2015 Oct.
Article En | MEDLINE | ID: mdl-25392386

Intimate partner violence is a commonly acknowledged health care issue. While numerous studies established the health implications of physical and/or sexual intimate partner violence among women of reproductive age, the evidence is scarce for older women and for other forms of intimate partner violence. This study, therefore, investigates the prevalence of intimate partner violence in its different forms and its association with physical and mental health symptoms of older women, using women of reproductive age as a reference group. This study is a cross-sectional study, utilizing data from a national representative survey of 10,264 German women aged 16 to 86 years. Rates of physical and sexual intimate partner violence in the last year decreased from 8% to 3% and 1% among women aged 16 to 49 years, 50 to 65 years, and 66 to 86 years, respectively. The prevalence of emotional and economic abuse and controlling behavior by partners remained nearly the same. All forms of intimate partner violence had significant associations with women's health symptoms, such as gastrointestinal, psychosomatic and psychological symptoms, and pelvic problems. Controlling behavior was most consistently associated with most health symptoms. Health and care professionals who screen women for intimate partner violence should, therefore, consider incorporating questions about controlling behavior as well, because this form of violence is not only frequent but also has multiple health outcomes among women across all ages.


Battered Women , Intimate Partner Violence , Women's Health , Adolescent , Adult , Aged , Aged, 80 and over , Battered Women/statistics & numerical data , Cross-Sectional Studies , Female , Germany , Humans , Intimate Partner Violence/statistics & numerical data , Middle Aged , Young Adult
20.
BMJ Open ; 4(12): e006434, 2014 Dec 14.
Article En | MEDLINE | ID: mdl-25500772

OBJECTIVES: This priority setting partnership was commissioned by Parkinson's UK to encourage people with direct and personal experience of the condition to work together to identify and prioritise the top 10 evidential uncertainties that impact on everyday clinical practice for the management of Parkinson's disease (PD). SETTING: The UK. PARTICIPANTS: Anyone with experience of PD including: people with Parkinson's (PwP), carers, family and friends, healthcare and social care professionals. Non-clinical researchers and employees of pharmaceutical or medical devices companies were excluded. 1000 participants (60% PwP) provided ideas on research uncertainties, 475 (72% PwP) initially prioritised them and 27 (37% PwP) stakeholders agreed a final top 10. METHODS: Using a modified nominal group technique, participants were surveyed to identify what issues for the management of PD needed research. Unique research questions unanswered by current evidence were identified and participants were asked to identify their top 10 research priorities from this list. The top 26 uncertainties were presented to a consensus meeting with key stakeholders to agree the top 10 research priorities. RESULTS: 1000 participants provided 4100 responses, which contained 94 unique unanswered research questions that were initially prioritised by 475 participants. A consensus meeting with 27 stakeholders agreed the top 10 research priorities. The overarching research aspiration was an effective cure for PD. The top 10 research priorities for PD management included the need to address motor symptoms (balance and falls, and fine motor control), non-motor symptoms (sleep and urinary dysfunction), mental health issues (stress and anxiety, dementia and mild cognitive impairments), side effects of medications (dyskinesia) and the need to develop interventions specific to the phenotypes of PD and better monitoring methods. CONCLUSIONS: These research priorities identify crucial gaps in the existing evidence to address everyday practicalities in the management of the complexities of PD.


Delivery of Health Care , Disease Management , Health Priorities , Parkinson Disease/therapy , Research , Caregivers , Consensus , Data Collection , Family , Friends , Health Personnel , Health Services Needs and Demand , Humans , Parkinson Disease/complications , Patients , United Kingdom
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