Embedding a Human Rights Based Approach to Dementia Care
Award Number
12/209/53Programme
Health and Social Care Delivery ResearchStatus / Stage
CompletedDates
2 May 2014 -1 October 2016
Duration (calculated)
02 years 04 monthsFunder(s)
NIHRFunding Amount
£407,317.08Funder/Grant study page
NIHRContracted Centre
Mersey Care NHS TrustContracted Centre Webpage
Principal Investigator
Professor Peter KindermanPI Contact
P.Kinderman@liverpool.ac.ukWHO Catergories
Legislative and regulatory environmentsTools and methodologies for interventions
Disease Type
Alzheimer's Disease (AD)CPEC Review Info
| Reference ID | 67 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | 12/209/53 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20140502 |
| End Date | 20161001 |
| Duration (calculated) | 02 years 04 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | Mersey Care NHS Trust |
| Contracted Centre Webpage | |
| Funding Amount | £407,317.08 |
Abstract
Does the application of a Human Rights Based Approach to Health Care lead to improvements in the care and well-being of people with dementia in an inpatient/care home setting? In line with this, the study aims to evaluate whether the delivery of Human Rights Training to staff and the subsequent introduction of a Human Rights Based Assessment Tool impacts on both the care and well-being of individuals with dementia. Both the Assessment Tool and Human Rights Based Training Package have been developed and piloted by Mersey Care NHS Trust. The current proposal is to extend the pilot study by implementing and further evaluating the impact of the Training Package and Assessment Tool in NHS Mental Health Trusts and care homes. The Human Rights Based training is a one day training package designed to raise staff awareness of the Human Rights Act and provide guidance in implementing a Human Rights Based Approach to Dementia Care. It also trains staff in using the Human Rights Based Assessment Tool and includes a specially commissioned DVD, which encourage interactive learning of Human Rights based approaches when making clinical decisions. Following the training, the Human Rights Based Assessment Tool – Getting it Right – will be implemented at the intervention site. Three booster sessions will be delivered, monthly, to aid embedding a Human Rights Based Approach to care. The intervention package is described more fully in the detailed project plan. The research will use a cluster randomised design to compare the impact of implementing the intervention, i.e. the training package, Assessment Tool, and booster sessions on 10 intervention sites as compared to 10 control sites. The control sites will continue with treatment as usual. No active placebo is indicated. Control sites will receive the training following the conclusion of the research. Baseline measures will be completed 1 week prior to an intervention site receiving training. Demographic data and an assessment of cognitive impairment, as measured by the Alzheimer’s Disease Assessment Scale (ADAS-Cog), will be completed to ensure that the participants from hospital inpatient and care home settings are comparable on these factors. Demographic data will also be collected from staff at the sites to compare level of training and experience. The primary outcome measure used in the research will be the Quality of Life in Alzheimer’s disease (QOL-AD; Logsdon, Gibbons, McCurry & Teri, 1999) to assess the subjective well being of the person with dementia as it is brief, has demonstrated sensitivity to psychosocial intervention, correlates with health-utility measures, and can be used by people with MMSE scores as low as 3. The QOL-AD proxy version will also be used to elicit the views of both the staff and family carer supporting the individual with dementia. Health economic measures, EQ-5D and ASCOT, will also be completed. A care plan audit will be conducted at each site to provide a measure of the documented plan of care for each service user. An audit tool has been specifically designed for the study. This will aid in establishing whether Human Rights Based training is an explanatory variable in any changes in care and well-being observed over and above a standard training package as it allows for presence of Human Rights based language and concepts in care plans to be directly assessed. The standard of care provided at the site and its link to well-being will be assessed via Dementia Care Mapping (DCM; Bradford Dementia Group, 1997) – an observational assessment yielding quantitative measures of well-being and ill-being for the individual with dementia. Vignette based semi structured interviews will be conducted with multi-disciplinary staff at various grades at each site. The interviews focus on the staff’s decision making processes in relation to complex clinical decisions and aim to assess whether the introduction of a Human Rights Based Approach provides staff with a more robust decision making framework. Family carer well being will be assessed via the Warwick Edinburgh Mental Well-Being Scale (WEMWBS)and the Zarit Burden Interview (ZBI) will explore their perception of caring responsibilities. There are currently no existing measures to directly evaluate the extent to which an individual perceives that their basic Human Rights of Fairness, Respect, Equality, Dignity and Autonomy (The FREDA principles) are being upheld. A preliminary piece of work will develop such a questionnaire. The resulting questionnaire will undergo initial validation in this study. In order to assess knowledge acquisition and attitude change during the training pre and post-training measures of Human Rights knowledge and attitudes will be collected via the Human Rights Knowledge and Attitude Quizzes, as recommended by A Guide to Evaluating Human Rights Based Interventions in Health and Social Care (Donald, 2012). This data will be collected on the day of the training. Subsequent to the 3rd, and final, booster session post-intervention measures will be taken: QOL-AD, QOL-AD proxy, Dementia Care Mapping, Care plan audit, vignette based semi-structured interviews, FREDA questionnaire, WEMWBS and ZBI. The intervention and control groups will be compared using analyses of variance, adjusted for cluster randomisation, on scores on the QOL-AD, FREDA questionnaire scores, WEMWBS, ZBI and scores of well-being and ill-being from the Dementia Care Mapping process. Vignette based interviews will be anlaysed using thematic analysis as outlined by Braun & Clarke (2006). The main benefits expected as a result of the research are: Increased subjective and objective well being of people with dementia in inpatient wards or care settings. This will be seen in an increased standard of care for people with dementia in inpatient or care settings and improvements in the reported subjective wellbeing of people with dementia. Additionally, we predict that a successful intervention will result in staff working on dementia inpatient wards or care settings having a more robust framework in which to make complex clinical decisions on a day to day basis. The additional validation of the FREDA questionnaire would also allow to assessment of service user’s opinion on the level to which their basic Human Rights are respected. This will have significant utility in future research and care management.
Plain English Summary
This project aims to discover whether introducing a Human Rights Based Approach to health care in dementia hospital inpatient wards or care homes leads to increases in the quality of life and well-being of people with dementia and improvements in the standard of care that they receive. A Human Rights Based Approach to health care bridges the gap between law (the Human Rights Act) and care provision by providing staff with practical strategies to assist them in delivering care that is both person centred and mindful of an individual’s human rights. A Human Rights Based assessment tool (Getting it Right Assessment Tool) has been developed that will allow staff to complete a person centred assessment whilst capturing an individual’s basic human rights of Fairness, Respect, Equality, Dignity and Autonomy (FREDA principles). The Getting it Right assessment tool is accompanied by a one day staff training package to raise awareness of human rights, explore how human rights and dementia are linked and train staff in using the assessment tool. Following the training 3 consultation sessions will be held at participating sites to allow them to discuss issues that might have been raised whilst trying to apply a Human Rights Based Approach. The project will implement the intervention package outlined above on 10 dementia inpatient wards/ care homes and compare changes on a number of measures with 10 other sites where the intervention has not been implemented. Measures of cognitive impairment of the residents on the inpatient ward or care home will be taken using the Alzheimer’s Disease Assessment Scale (ADAS-Cog). This will ensure that there are not significant differences between the levels of cognitive impairment of people from inpatient or care home settings. Similarly the level of experience and qualifications of the staff in the two settings will be assessed so we can be confident that they are comparable across the settings. We would not expect scores on the ADAS-Cog to change significantly over the relatively short duration of the research project. The main area where change will be assessed will be service user quality of life, as measured by the Quality of Life in Alzheimer’s Disease scale (QOL-AD). The QOL-AD is a facilitated self report measure that examines a number of areas of quality of life. It is often the assessment of choice when looking at quality of life in people with dementia as it is brief, has been shown to be effective in picking up changes and can be used with people with significant levels of cognitive impairment. A separate measure (Qol-AD carer version) will also be used to see whether other people supporting the person with dementia also notices a change in quality of life. This will be completed with both a staff member and a family carer. The well being of family carers will also be explored by completing the Warwick Edinburgh Mental Well-Being Scale (WEMWBS). The Zarit Burden Interview (ZBI) will explore their perception of caring responsibilities. To look at levels of care on the unit, an audit tool has been designed which will allow the assessment of the written plan of care each person with dementia has. This measure is based on best practice and will look for increases in the number of times human rights issues are mentioned. Additionally, Dementia Care Mapping involves specially trained assessors observing people with dementia over a period of hours and identifying specific behaviours which indicate well-being or ill-being. This method will be used to look at the level of care provided on the ward or care home. It is suggested that training staff in a Human Rights Based Approach will provide them with a better set of criteria to help them make difficult decisions in their day to day work. This will be measured qualitatively by asking staff during interviews about how they would make decisions in a series of situations that reflect the type of decisions they are required to make every day. A further aim of the study is to validate a questionnaire which has been specifically developed to assess how much people with dementia feel their FREDA rights are respected and upheld. These measures will be completed both before and after the intervention is implemented. This means that the project will be able to compare changes that have taken place since the intervention was implemented as well as comparing the intervention sites to the sites where no intervention has taken place. The research team brings together clinicians and academics with expertise in the areas of dementia, human rights and well-being. The team also has experience in the design, delivery and evaluation of training packages. Both qualitative and quantitative methodologies will be used and experts in these areas are members of the research team. The project will be considered by a relevant NHS Research Ethics Committee. Experienced clinical staff will assess the capacity of each potential participant, in line with best practice in research governance and the recommendations of the Mental Capacity Act, and individuals will give (or withhold) consent if they are able to give informed consent themselves. Where potential participants are judged to lack capacity for this decision, their data will not be included in this research and they will not be asked to complete any research questionnaires, but will still receive the care offered. The major cost associated with the project is the employment of two research assistants for the duration of the project. This is necessary in order to be able to complete the effective evaluation of the intervention. It is suggested that if successful the project will lead to increases in the quality of life and well-being of people with dementia on inpatient wards or care homes. This will be reflected in improvements in the care that people with dementia receive in these settings. It is also suggested that the intervention will provide staff working in these settings with a most robust framework in which to make difficult decisions they face everyday in their clinical work. This would result in a more skilled and empowered workforce. The development of a specific FREDA questionnaire will allow staff or researchers to assess service user’s opinion on the level to which their basic Human Rights are respected. This will have significant benefits in both care planning and future research in the area.