A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings



Kinderman, Peter, Butchard, Sarah ORCID: 0000-0002-5943-2575, Bruen, Ashley J, Wall, Abbie, Goulden, Nia ORCID: 0000-0001-6511-3987, Hoare, Zoe ORCID: 0000-0003-1803-5482, Jones, Carys ORCID: 0000-0001-6159-1842 and Edwards, Rhiannon ORCID: 0000-0003-4748-5730
(2018) A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings. Health Services and Delivery Research, 6 (13). 1 - 134.

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Abstract

<jats:sec id="abs1-1"><jats:title>Background</jats:title><jats:p>Although it is widely recognised that adopting a person-centred approach is beneficial in the care of people living with dementia, a gap remains between the rhetoric and the reality of quality care. Some widely adopted care practices can result in the personhood of this group being threatened and their human rights being undermined.</jats:p></jats:sec><jats:sec id="abs1-2"><jats:title>Objectives</jats:title><jats:p>To evaluate the impact of applying a human rights based approach in dementia inpatient wards and care homes on the quality of care delivered and the well-being of the person living with dementia.</jats:p></jats:sec><jats:sec id="abs1-3"><jats:title>Design</jats:title><jats:p>A cluster randomised design was employed to compare the impact of implementing a human rights based approach intervention (i.e. training, applying the ‘Getting It Right’ assessment tool and receiving booster sessions) at 10 intervention sites with 10 control sites.</jats:p></jats:sec><jats:sec id="abs1-4"><jats:title>Setting</jats:title><jats:p>Eight NHS dementia inpatient wards and 12 care homes in the north-west of England.</jats:p></jats:sec><jats:sec id="abs1-5"><jats:title>Participants</jats:title><jats:p>People living with dementia who were residing on dementia inpatient wards or in care homes, and staff working at these sites. The aim was to recruit 280 people living with dementia.</jats:p></jats:sec><jats:sec id="abs1-6"><jats:title>Interventions</jats:title><jats:p>A sample of staff (an average of 8.9 per site) at each of the sites was trained in a human rights based approach to care, including the application of the ‘Getting It Right’ assessment tool. The tool was then introduced at the site and monthly booster sessions were delivered.</jats:p></jats:sec><jats:sec id="abs1-7"><jats:title>Main outcome measures</jats:title><jats:p>The primary outcome measure used in the research was the Quality of Life in Alzheimer’s Disease scale to assess the subjective well-being of the person with dementia. Secondary outcome measures included measures of the quality of care provided (dementia care mapping) and direct measures of the effectiveness of the training in increasing knowledge of and attitudes towards human rights. The study also included an economic evaluation utilising the EuroQol-5 Dimensions, three-level version, and the Adult Social Care Outcomes Toolkit measure.</jats:p></jats:sec><jats:sec id="abs1-8"><jats:title>Results</jats:title><jats:p>The study recruited 439 people living with dementia: 213 to the intervention arm and 226 to the control arm. Primary outcome data were analysed using a linear mixed model. There were no significant differences found in the reported quality of life of residents between the control and intervention groups after the intervention [<jats:italic>F</jats:italic>(1,16.51) = 3.63;<jats:italic>p</jats:italic> = 0.074]. The mean difference between the groups was 1.48 (95% confidence interval –7.86 to 10.82).</jats:p></jats:sec><jats:sec id="abs1-9"><jats:title>Conclusions</jats:title><jats:p>Despite the fact that the training increased staff knowledge of and positive attitudes towards human rights, and although there were some changes in staff decision-making strategies in clinical situations, there was no change in the quality of care provided or in the reported well-being of people living with dementia in these settings. This led to questions about the efficacy of training in bringing about cultural change and improving care practices.</jats:p></jats:sec><jats:sec id="abs1-10"><jats:title>Limitations</jats:title><jats:p>There was limited uptake of the training and booster sessions that were integral to the intervention.</jats:p></jats:sec><jats:sec id="abs1-11"><jats:title>Future work</jats:title><jats:p>Future work could usefully focus on understanding the difficulty in translating change in attitude and knowledge into behaviour.</jats:p></jats:sec><jats:sec id="abs1-12"><jats:title>Trial registration</jats:title><jats:p>Current Controlled Trials ISRCTN94553028.</jats:p></jats:sec><jats:sec id="abs1-13"><jats:title>Funding</jats:title><jats:p>This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in<jats:italic>Health Services and Delivery Research</jats:italic>; Vol. 6, No. 13. See the NIHR Journals Library website for further project information.</jats:p></jats:sec>

Item Type: Article
Depositing User: Symplectic Admin
Date Deposited: 02 Dec 2019 11:14
Last Modified: 02 Dec 2021 08:20
DOI: 10.3310/hsdr06130
URI: https://livrepository.liverpool.ac.uk/id/eprint/3064413