Project objectives

The main aim of this study was to conduct a meta-synthesis of barriers and facilitators in accessing care for dementia in ethnic minority groups.

Changes to project objectives

None

Methods

In order to fully explore the literature and to develop new insights, ameta-synthesis was conducted. The following electronic databases were searched:Cochrane Central Register of Controlled Trials (CENTRAL) March 2016, MEDLINE (Ovid) from inception to April 2016,PsycINFO (Ovid) from inception to April 2016,Embase (Ovid) from inception to 2016,Cochrane Database of Systematic Reviews 2005 to April 2016. In addition we searched reference lists of included studies and systematic reviews to identify any papers that the search did not pick up.  Searches were conducted to specifically capture studies on barriers and facilitators in accessing care for dementia in ethnic minorities. 

Studies were eligible for inclusion in this review if they met the following criteria:

Population: Ethnic minority patients with dementia or memory problems; carers of ethnic minority patients with dementia; health professionals working with ethnic minority patients.

Study design: Empirical studies published as peer-reviewed journal articles or conference papers which report qualitative analysis. An operational definition of this criterion was that studies collected semi-structured interview data and content analysis reports were included in this classification. Mixed method studies were eligible if the qualitative data were analysed separately to the quantitative data.

Outcome: The qualitative analysis described the barriers and enablers to ethnic minority patients, carers and health professionals’ views of barriers in accessing dementia care.

Setting/context: Any country without restriction in publication date and language.

Exclusion criteria: Unpublished dissertations and book chapters.

Results

The initial search identified 999 records with a further 15 identified from reference list searches. After duplicates were removed, 684 records remained and the abstracts were read. 629 records were excluded at this stage and 55 papers were selected and fully screened to establish if the inclusion criteria were met.  In total 28 papers were included in the review.

Most of the included papers focussed on barriers to service use by ethnic minorities with some limited presentation of facilitators. In comparison to other recent reviews we developed similar themes in terms of barriers to services for patients with dementia from ethnic minority groups.

However, we felt that much of the research could be condensed in to two overarching concepts: inadequacies and cultural habitus/experience.

The first concept was of inadequacies around knowledge and services. This incorporates all of the original themes around the deficit of various things in education and service provision. This included lack of knowledge about the disease and preconceived ideas around treatability, lack of awareness and familiarity with available services, as well as inadequacies in the health care system.

Cultural habitus was a concept devised by Bourdieu to refer to socialised norms or tendencies that guide behaviour and thinking. It describes the deeply ingrained habits, skills, and dispositions we exhibit as a result of life experience. Cultural issues were seen to play a major role in families seeking help with dementia patients.

Conclusions

The review identified a relatively large body of research on barriers and facilitators to dementia services by ethnic minority populations.

We developed two overarching concepts from the literature: inadequacies and cultural habitus. The two concepts lend themselves to interventions at either a service level (inadequacies) or a community level (Cultural habitus). 

There was a paucity of research focussed on facilitating factors and most of that research reflected on service level facilitators. One reason for this may be that it is an easier area to address.  With increased resources and suitable adaptations to processes such as information provision, training for health professionals and culturally adapting services to specific needs of a population, many of these barriers could be addressed. However, aspects of cultural habitus whilst being both overt and covert in nature (people are generally not aware of how it impacts on them), even with investment may not be amenable to change or is part of a long process which requires years of intervention to produce small changes.

The two concepts are strongly linked and in no way independent of each other. Therefore, to address them separately is likely to produce limited results. We present a model for addressing barriers on multiple levels. Intervention at a service level, working to improve knowledge of dementia in the population and improving practitioner recognition of the problem and adapting services to give patients more choice will not work if cultural views are not also taken in to consideration. All service level interventions need to take place within community based interventions.

Plain English summary

Background

In England, over 800,000 people have dementia, 25,000 of whom are people from ethnic minorities.  Recognising dementia as early as possible is the best way to support patients and their families. However, many patients from ethnic minorities and their families do not receive care for dementia. It is clear that we need to improve access to dementia care for patients and their carers from ethnic minorities. The first step for doing so is to understand barriers encountered by patients and carers from ethnic minorities when seeking care for dementia.

Research aim

This study aimed to explore the views and experiences of ethnic minority patients and carers about what helps or hiders their accessing care for dementia.

Methods

We identified published qualitative studies, which explored the personal views and experiences of patients and carers from ethnic minorities around accessing dementia care. The results of these studies were compared and reinterpreted to develop new understanding.

Results

In total 28 papers were included in the review. Through the analysis we felt that much of the research could be condensed in to two overarching concepts: inadequacies and cultural habitus/experience. The first concept was of inadequacies around knowledge and services. This incorporated all of the original themes around the deficit of various things in education and service provision. This included lack of knowledge about the disease and treatability, lack of awareness and familiarity with available services, as well as inadequacies in the health care system. Cultural habitus was a concept devised by Bourdieu to refer to socialised norms or tendencies that guide behaviour and thinking. It describes the deeply ingrained habits, skills, and dispositions we exhibit as a result of life experience. Cultural issues were seen to play a major role in families seeking help with dementia patients.

Conclusions

We developed two overarching concepts from the literature: inadequacies and cultural habitus. The two concepts lend themselves to interventions at either a service level (inadequacies) or a community level (Cultural habitus).  The two concepts are strongly linked and in no way independent of each other. Therefore, to address them separately is likely to produce limited results. We present a model for addressing barriers on multiple levels. All service level interventions need to take place within community based interventions

Dissemination

Published Papers

Barriers and facilitators in accessing dementia care by ethnic minority groups: a meta-synthesis of qualitative studies: Kenning C, Daker-White G, Blakemore A, Panagioti M,  Waheed W

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-017-1474-0

Conferences:Posters

The qualitative synthesis review was also presented as a poster at the SPCR 10 year anniversary event in London (22/11/2016).

Public involvement

Public and participant involvement has been helpful in considering the implications of the research, and how the risk score could be used in practice. Discussions with public contributors and clinicians in practice suggested that further work is needed to understand the role of dementia risk assessment and case-finding in primary care, and how this can be best supported. This is being taken forward with a two linked qualitative studies exploring the role of dementia risk assessment and case-finding in primary care from the perspectives of patients and family care-givers and health care professionals.

We have developed liaison with ethnic community groups and have presented to them our project. On 14th Dec we held a meeting for our newly established Academic-community  research partnership focusing on dementia in ethnic groups. This partnership will continue to meet regularly and had 20 confirmed participants for the first meeting.

Impact

As a systematic review it has not had any direct impact on practice.

The results are being used to prepare a PGfAR application to NIHR.

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 300)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.