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

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

How organisational arrangements affect service provision

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

The role of resilient coping in dementia carers' wellbeing

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

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

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

Promoting Meaningful Partnerships with Lived Experience Experts in High Quality Research: Considerations for Funders

For the past several years, the Annie E. Casey Foundation, Casey Family Programs, and the William T. Grant Foundation have funded and worked in close partnership with more than 50 individuals representing a broad array of experts, stakeholders, and people with lived experience to develop a 21st Century Research Agenda for a Child and Family Well-Being System, which comprises the most pressing research gaps that span each aspect of child welfare system involvement, including: community-based family support and maltreatment prevention, child protective services involvement and prevention of family separation, and out-of-home care and post-permanency services. Partnering organizations include Black Administrators in Child Welfare (BACW), the National Indian Child Welfare Association (NICWA), Child Trends Hispanic Institute, the American Public Human Services Association (APHSA), the Child Welfare League of America (CWLA), Social Current, and the American Academy of Social Work and Social Welfare (AASWSW).As part of this effort, a team of six lived experience experts (i.e., individuals with lived experience with the child welfare system—including two young adults with foster care histories, two birth parents, a grandparent/kinship caregiver, and a foster caregiver) have been equal partners in project leadership, serving in various roles related to project development and dissemination, and serving as full voting members of the project's Steering Committee. This type of sustained collaboration is essential for forward movement.Given the unprecedented nature and scale of this partnership, we commissioned a brief describing the partnership process and outlining guidance for funders in supporting meaningful partnerships between researchers and lived experience stakeholders

Arctic Ocean Tides from GRACE Satellite Accelerations

Models are routinely used to remove the effects of global ocean tides from GRACE data during processing to reduce temporal aliasing into monthly GRACE solutions. These models have typically been derived using data from satellite altimeter missions such as TOPEX/Poseidon. Therefore the Arctic ocean components of tide models aren\u27t constrained by altimetry data, potentially resulting in errors that are likely to alias into monthly GRACE gravity fields at all latitudes. Seven years of GRACE inter-satellite accelerations are inverted to solve for corrections to the amplitude and phase of major solar and lunar ocean tides at latitudes north of 50°N using a mascon approach. The tide model originally applied to our data was FES2004, truncated to maximum degree lmax = 90. Simulations are performed to verify that our inversion algorithm works as designed. Uncertainty estimates are derived from tidal solutions on land, and by subtracting two independent solutions that each use 3.5 years of data. Features in the M2 and K1 solutions that rise above the noise floor likely represent errors in the FES2004 model. Errors due to truncating the spherical harmonic expansion of FES2004 are too small, and errors in the land mask model (needed to transform sea surface heights into mass) only affect coastal areas and don\u27t produce similar relative amplitudes in both tidal constituents. In the oceans north of 50°N, these residual estimates tend to reduce the FES2004 amplitudes for M2, K1, O1, and P1. The power spectra of accelerations are analyzed, and reductions in the variance of accelerations not used in our inversion suggest that our results can be used to improve GRACE processing

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

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

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

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

CAPAbility: Comparison of the JOURNEY II Bi-Cruciate Stabilised and GENESIS II total knee arthroplasty in performance and functional ability: protocol of a randomised controlled trial

Background: Osteoarthritis of the knee is a common condition that is expected to rise in the next two decades leading to an associated increase in total knee replacement (TKR) surgery. Although there is little debate regarding the safety and efficacy of modern TKR, up to 20% of patients report poor functional outcomes following surgery. This study will investigate the functional outcome of two TKRs; the JOURNEY II Bi-Cruciate Stabilised knee arthroplasty, a newer knee prosthesis designed to provide guided motion and improve knee kinematics by more closely approximating a normal knee, and the GENESIS II, a proven existing design. Aim: To compare the change in Patient-reported Outcome Measures (PROMs) scores of the JOURNEY II BCS and the GENESIS II from pre-operation to 6 months post operation. Methods: CAPAbility is a pragmatic, blinded, two-arm parallel, randomised controlled trial recruiting patients with primary osteoarthritis due to have unilateral TKR surgery across two UK hospitals. Eligible participants (n = 80) will be randomly allocated to receive either the JOURNEY II or the GENESIS II BCS knee prosthesis. Baseline measures will be taken prior to surgery. Patients will be followed at 1 week, 6 to 8 weeks and 6 months post-operatively. The primary outcome is the Oxford Knee Score (OKS) at 6 months post-operatively. Secondary outcomes include: Other PROMs, biomechanical, radiological (computerised tomography, (CT)), clinical efficacy and safety outcomes. An embedded qualitative study will also investigate patients' perspectives via interview pre and post surgery on variables known to affect the outcome of TKR surgery. A sub-sample (n = 30) will have additional in-depth interviews to explore the themes identified. The surgeons' perspectives on the operation will be investigated by a group interview after all participants have undergone surgery. Discussion: This trial will evaluate two generations of TKR using PROMS, kinematic and radiological analyses and qualitative outcomes from the patient perspective