Understanding dementia among the Bangladeshi community in Great Britain

MAJOR REVIEW

Muhammad Zakir Hossain

School of Health Sciences and Social Work

Registration Period

(01 February 2012 to 29 February 2016)

30 Jan, 2013

(To Academic Registry University of Portsmouth)

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Table of Contents

TABLE OF CONTENTS ........................................................................................................................................II

LIST OF ABBREVIATIONS ................................................................................................................................ III

1. STATEMENT OF AIMS ................................................................................................................................... 1

2. LITERATURE REVIEW .................................................................................................................................... 2

2.1. BACKGROUND AND RESEARCH CONTEXT ................................................................................................................ 2 2.1.1. DEMENTIA IN ETHNIC MINORITY GROUPS ........................................................................................................... 2 2.1.2. DEMENTIA IN THE BANGLADESHI COMMUNITY .................................................................................................... 4 2.2. IMPORTANCE AND CONTRIBUTION OF PROPOSED RESEARCH ...................................................................................... 5

3. RESEARCH OUTLINE ..................................................................................................................................... 5

3.1. RESEARCH DESIGN ............................................................................................................................................ 5

PART ONE ........................................................................................................................................................ 6

4. METHODOLOGY ........................................................................................................................................... 6

4.1. QUALITATIVE SYNTHESIS .................................................................................................................................... 6 4.1.1. OVERVIEW OF QUALITATIVE SYNTHESIS .............................................................................................................. 6 4.2. META AGGREGATION AND THE SYSTEMATIC REVIEW PROCESS ................................................................................... 7

Figure 1: Systematic Review Process ............................................................................................................. 8 4.2.1. INCLUSION CRITERIA....................................................................................................................................... 8 4.2.2 METHODS OF THE REVIEW ............................................................................................................................. 10 4.3. DISCUSSION .................................................................................................................................................. 10

PART TWO ..................................................................................................................................................... 11

5. PRIMARY RESEARCH – QUALITATIVE RESEARCH ........................................................................................ 11

5.1. DATA COLLECTION .......................................................................................................................................... 11 5.2. SAMPLING .................................................................................................................................................... 11 5.2.1. RECRUITMENT ............................................................................................................................................ 12 5.3. DATA ANALYSIS .............................................................................................................................................. 12 5.4. ETHICS AND GOVERNANCE ............................................................................................................................... 13 5.5. OUTCOMES ................................................................................................................................................... 13

6. TIMETABLE ................................................................................................................................................. 14

7. RESOURCE NEEDS AND FUNDING............................................................................................................... 14

8. RESEARCH PROGRESS ................................................................................................................................ 14

8.1. STAGE ONE ................................................................................................................................................... 14 Figure 2: The Steps in Meta-Aggregation ................................................................................................... 15

8.2. STAGE TWO .................................................................................................................................................. 16

9. RESEARCH TRAINING ................................................................................................................................. 17

9.1. PRIOR QUALIFICATIONS AND TRAINING ............................................................................................................... 17 9.2. GSDP WORKSHOPS AND SUBJECT-SPECIFIC TRAINING ............................................................................................ 17 9.3. SEMINARS AND CONFERENCES ATTENDED ............................................................................................................ 17 9.4. PRESENTATIONS ............................................................................................................................................. 17

10. CONCLUSION............................................................................................................................................ 18

11. REFERENCES ............................................................................................................................................. 19

12. APPENDICES ............................................................................................................................................. 22

APPENDIX 1: COMPARISON OF COMMONLY USED SYNTHESIS APPROACHES IN HEALTHCARE RESEARCH ................................... 22 APPENDIX 2: SEARCH STRATEGY ............................................................................................................................... 24 APPENDIX 3: DATABASES ....................................................................................................................................... 26

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APPENDIX 4: JBI QUALITATIVE ASSESSMENT AND REVIEW INSTRUMENT (QARI) CRITICAL APPRAISAL TOOL .......................... 29 APPENDIX 5: GANNT CHART FOR PHD STUDY FROM FEB 2012 ...................................................................................... 30 APPENDIX 6: A FLOWCHART OF SEARCH RESULTS ........................................................................................................ 31 APPENDIX 7: PRIOR QUALIFICATIONS AND TRAINING .................................................................................................... 32 APPENDIX 8: GRADUATE SCHOOL WORKSHOPS AND SUBJECT-SPECIFIC TRAINING ............................................................... 32 APPENDIX 9: SEMINARS AND CONFERENCES ATTENDED ................................................................................................ 34

List of Abbreviations

AD: Dr Ann Dewey BME: Black and Ethnic Minority BWA: Bangladesh Welfare Association EPPI: The Evidence for Policy and Practice Information. (EPPI-Centre is part of the

Social Science Research Unit at the Institute of Education, University of London.)

DCQE: Department for Curriculum and Quality Enhancement ESRC: The Economic and Social Research Council GPROF: Graduate Students Professional Development GSDP: Graduate school Development Programme INSERM: French National Institute of Health and Medical Research JBI: The Joanna Briggs Institution MH: Mr Muhammad Hossain NHS: National Health Service NIHR: National Institute for Health Research PEOPPLE: Putting Evidence for Older People into Practice in Living Environments PPI: Patient and Public Involvement SHSSW: School of Health Sciences and Social Work YH: Dr Yohai Hakak

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1. Statement of aims

The research is likely to be conducted in two parts and therefore the aims of this study are to

PART ONE

Undertake a systematic qualitative research synthesis of primary studies by using

meta-aggregation approach guided by The Joanna Briggs Institution (JBI) to explore

both the South Asian older people’s views and experience of dementia as well as those

of their carers (informal and formal).

Through meta-aggregation clearly identify the gaps in the literature and bring new

knowledge and understanding of the attitudes, perceptions and beliefs of the South

Asian community about dementia among South Asian immigrant population living

away from home including the UK.

Explore the cultural and religious issues regarding treatment and accessibility to

health services in the UK for South Asian community.

Write up the findings from the meta-aggregation synthesis and navigate the process

of submission for publication.

PART TWO

Produce a new knowledge and understanding of the attitudes, perceptions, and

beliefs of the Bangladeshi community about dementia and increase awareness and

understanding of dementia among Bangladeshi communities in the UK.

Explore the cultural and religious issues regarding treatment and accessibility to

health services in the UK for Bangladeshi community.

This study will also seek to answer the following psycho-social research questions:

What are the range of views about dementia, perceptions, beliefs, and experiences of

older Bangladeshi people with and without dementia, their families and carers (formal

and informal)?

What are the potential barriers to diagnosis or other factors associated with missed

opportunities for dementia diagnosis and accessibility to services?

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2. Literature review

2.1. Background and research context The number of patients with dementia in the UK is estimated to be 821,884, representing

1.3% of the UK population (Luengo-Fernandez, Leal, & Gary, 2010). There are estimated to be

670,000 family and friends acting as primary carers (Lakey, Chandaria, Quince, Kane, &

Saunders, 2012). Dementia is an umbrella term for a decline in mental ability that is severe

enough to interfere with daily life. It is well-known that dementia can be debilitating not only

for the older people with dementia, but for family members as well (Wang, 2012). Dementia

nonetheless is an expensive condition with a considerable cost to both public and private

finances. Most importantly the current financial cost of dementia is £23 billion a year to the

NHS, local authorities and families and the cost will grow to £27 billion by 2018 (Lakey et al.,

2012). Moreover, immigrant ethnic minorities may face additional burden accessing the

British health care system. Some barriers arise out of their religious and cultural beliefs and

practices, other barriers are related to the complexity of the health care system. In some

cases, there may be a need to integrate cultural considerations into service to support

appropriate care and access to services.

2.1.1. Dementia in ethnic minority groups There are no exact figures regarding the prevalence of dementia in Black and Ethnic Minority

(BME) groups in the UK. Estimates range from 11,000 in 2004 (Dementia Advocacy Network,

2009) to 15,000 in 2009 (Department of Health, 2009) of people from BME groups with

dementia or 1.7% of all people with dementia in the UK . It is acknowledged that these figures

are likely to be a considerable under-representation (Knapp et al., 2007) and set to rise.

Because age is the most significant known risk factor for dementia and the large number of

South Asian migrants who came to the UK between 1950 and 1970 for work are now ageing.

There has been little UK based research on dementia conducted within BME groups however;

research to date has been conducted predominately in the US. Few previous reviews have

considered more than one or two dozen studies and majority of them are US based studies

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mainly focused on African American, Hispanic, Black Caregivers, Chinese, Chinese Americans,

Koreans, Korean Americans, Latinos, Whites and European Union carers of people with

dementia (Connell & Gibson, 1997; Connell, Janevic, & Gallant, 2001; Daker-White, Beattie,

Gilliard, & Means, 2002; Regan, Bhattacharyya, Kevern, & Rana, 2012). Again a review of the

international literature suffering from dementia on patients perspectives was conducted by

de Boer et al. (2007) in Netherlands, 50 international studies met inclusion criteria but none

was included from South Asian patients’ perspectives. Most dementia research among ethnic

minority people have been conducted within a relatively confined paradigm, and previous

reviews about South Asian people with dementia as well as their carers have examined only

a handful of studies.

More recently, a few reviews have been conducted at evidence in the UK with all reviews

reporting that more dementia research on ethnicity was conducted in US than UK and mainly

focused on African-Americans carers (Botsford, Clarke, & Gibb, 2011; Milne &

Chryssanthopoulou, 2005; Mukadam, Cooper, & Livingston, 2011). In those reviews, few

studies included South Asian carers and drew attention for further research to be conducted

within the South Asian communities. Moreover, Botsford, Clarke, & Gibb (2011)

acknowledged that the concept of ethnicity is complex and there is a risk that it may lead to

inappropriate generalisations. Therefore, they suggested researchers need to take account of

ethnicity but should ensure that compounding variables are not ignored and ethnic labels are

used sensitively and appropriately.

In summary, there is evidence that some research has been carried out on older people in the

wider South Asian immigrant community in the UK as well as in other countries. A small

proportion of this research utilises qualitative methodology and asks questions about attitude

towards diagnosis and treatment, barriers and enablers to service use and support. There is

a need to synthesis this work to provide a coherent critical summary of it. This may reveal

additional understanding and focus on future research. Therefore, a qualitative synthesis will

be conducted under Part one of this research study.

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2.1.2. Dementia in the Bangladeshi community The 2011 census shows the number of foreign-born residents in England and Wales has risen

by nearly 3 million since 2001 to 7.5 million people. Obviously, this is consistent with census

findings on international migration, which found that South Asian countries continued to rank

highly within the most common non-UK countries of birth (Office for National Statistics,

2012). Significantly, among all South Asian immigrants Bangladeshis have experienced greater

increase since 1991. As of today, the highest rates of growth for Bangladeshi immigrants are

estimated to 447,201 in England and Wales (Jivraj, 2012), which is above 57% increased from

283,063 in 2001. As the last decades have shown Bangladeshi is a fast growing ethnic

minority, however these figures may under-estimate total population since, in the past,

Bangladeshis have generally been combined into the category “Pakistani” for much of the

period till 1972 and therefore, it has been argued that the Bangladeshis represent ‘a

concealed community’ (Peach, 1990 cited in Alexander, Firoz, & Rashid, 2005, p. 8). Despite

increasing numbers, the Bangladeshi community often represent the lowest education rates

and experience disproportionately high rates of unemployment, overcrowding; poorest

socio-economic and worst health positions than the overall population in the UK (Garbin,

2005; Office for National Statistics, 2002).

Despite the increasing number of older people from Bangladeshi community, it appears that

little or no specific research has been carried out on their understanding of dementia.

However, as part of ageing South Asians has more heart disease than Europeans and among

South Asians Bangladeshis are at greater risk developing heart disease (Bhopal et al., 1999;

Patel & Bhopal, 2004). Moreover, type 2 diabetes is markedly higher for Bangladeshi

immigrants among South Asian and all other ethnic minority immigrants in the UK (Diabetes

UK, 2010). Consequently, principal risks factors have been identified as important indicators

of developing dementia these are diabetes and heart disease. Diabetes increases dementia

risk (Bruce, Harrington, Davis, & Davis, 2001; Peila, Rodriguez, & Launer, 2002; Stewart &

Liolitsa, 1999) and a joint research between the University College London (UK) and the

French National Institute of Health and Medical Research (INSERM) has found that heart

disease patients are likely to develop dementia which will be expressed through problems

with reasoning, vocabulary and verbal fluency (Singh-Manoux et al., 2008).

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2.2. Importance and contribution of proposed research To our best knowledge, this will be the first primary research utilising qualitative methodology

of ageing and dementia among Bangladeshi elderly people in the UK. The purpose of this

research is to inform action and to produce new knowledge that will be applicable outside of

the context of the research setting with implications for other UK Bangladeshi elderly persons

living with dementia, their families and health care professionals. Therefore, this research will

seek to contextualize its findings within the larger body of research and its results will have

implications for policy.

3. Research outline

3.1. Research design This research will utilise qualitative methodology and will be conducted in two parts.

Part one: Qualitative synthesis of primary studies will be conducted using meta-aggregation

guided by the JBI approach. This will comprise a number of set stages; comprehensive search

of the literature, critical appraisal of potential studies using a suitable criteria tool, synthesis

of the findings from included studies and finally “line of argument” output which can be used

as a basis for evidence-based practice. In addition, this meta-aggregation will identify clear

gaps in the current literature, as well as informing the research question(s) and direction of

the 2nd part of the study.

Part two: This is likely to be a primary qualitative study of male and female adults from the

Bangladeshi community using one to one exploratory audio taped interviews with a) Older

Bangladeshi (>60) with dementia b) formal and informal carers of Bangladeshi older people

with dementia c) Older Bangladeshi (>60) without dementia d) informal carers/family

members living with older Bangladeshi adults. The interview schedule will be guided by the

synthesis from Part one.

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PART ONE

4. Methodology

4.1. Qualitative synthesis Qualitative synthesis is a general term used to describe the ‘pooling together’ of a body of

research on a particular topic. The aim of qualitative synthesis is to describe, combine and

analyse for common meaning to draw conclusions on the research evidence, which can be

used to inform decisions making for clinicians and policy makers (Ring, Ritchie, Mandava, &

Jepson, 2011). In the fields of health and social care, the synthesis of the qualitative studies

are best available evidence to support decision making at the policy and practice level is

increasing in importance. For example, experiences of dementia, diagnostics, treatment and

care management may vary across ageing South Asian populations due to physiological,

psycho-social, religious and cultural sensitive issues. Many qualitative studies have sought to

understand the experiences of people with dementia and the people without dementia as

well as their formal and informal carers. However, because individual qualitative studies are

context specific and have produced different findings, which may or may not contradict each

other, yet a synthesis can summarise common meaning and provide an overview to give a

sense of the whole. Qualitative synthesises combine all the similar studies and include

processes that allow the research remain transparent, consistent, and comprehensive to the

interpretive rendering in individual particular study (Sandelowski & Barroso, 2003).

4.1.1. Overview of qualitative synthesis Despite growing recognition of the contribution of qualitative synthesis in health sciences and

practice, the synthesis or aggregation in a systematic review of qualitative studies is still

methodologically controversial (Reis, Hermoni, Van-Raalte, Dahan, & Borkan, 2007). There

are a wide range of qualitative synthesis methods with many common features, but also key

differences. The main methods of qualitative synthesis include: meta-ethnography; critical

interpretive synthesis; thematic synthesis; meta-study; content analysis; grounded theory;

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and meta-aggregation. Between all other methods of qualitative synthesis perhaps meta-

ethnography is best known and most widely cited (Campbell et al., 2011). Meta-

ethnography’s usefulness lies in its ability to generate theoretical understandings that may or

may not be suitable for testing empirically. Narrative Synthesis is useful in synthesising

different types of research evidence, and Thematic Synthesis is of use in drawing conclusions

based on common elements across otherwise heterogeneous studies.

All of these approaches do not, however, seek to provide guidance for action and aim only to

‘anticipate’ what might be involved in analogous situations and to understand how things

connect and interact (JBI 2008). In contrast, the JBI approach attempts to provide a systematic

approach, with defined steps to aid the novice research combine studies and provide new

knowledge to inform practice (Appendix 1).

4.2. Meta aggregation and the systematic review process Meta-aggregation is an approach that is increasing in popularity as qualitative evidence

synthesis designed to model the Cochrane Collaboration’s process of systematic reviews

summarizing results of quantitative studies whilst being sensitive to the nature of qualitative

research and its traditions (Pearson, 2004). The procedure of meta-aggregation involves three

phases; assembling the findings of studies (variously reported as themes, metaphors,

categories) and pooling them through further aggregation based on similarity in meaning to

arrive at a set of synthesized statements presented as ‘lines of actions’ that are directive in

nature for practice and policy (Hannes & Lockwood, 2011). These interpretive and critical

reviews will help to aggregate evidence related to the experiences of elderly people with

dementia as well as the experiences of their formal and informal carers. As a result, the

synthesis of this meta-aggregation qualitative approach will help to produce declamatory or

directive statements to guide health care practitioners and policy makers. Below the figure

sets out the steps of the approach to meta-aggregation that has been adopted.

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Figure 1: Systematic Review Process

Source: Pearson, Robertson-Malt, & Rittenmeyer, 2011

4.2.1. Inclusion criteria

The PICO (Population, the phenomena of Interest, the Context and the Outcome(s) of

interest) qualitative mnemonic will be used to construct a clear and meaningful question(s)

for this systematic review protocol of qualitative evidence.

Population

1. South Asian people aged 60 years or greater, with a diagnosis of dementia.

2. Formal and informal carers.

Formulate PICO Question

Develop Search Strategy

Searching for the Evidence

Selecting Studies

Critically Appraising Studies

Data Extraction

Data Synthesis

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Phenomenon of interest

Knowledge, perception, understanding, and experiences of dementia.

Context

Communities and primary care based settings.

Types of outcomes

Themes related to the experiences of elderly people with dementia and their carers (informal

and formal).

Types of studies

Primary qualitative studies, interpretive and critical research studies to assure that no

philosophical or non-philosophical matters of the studies would be missed.

Search strategy

In the initial literature search will be no methodological limits in order to assure the maximum

retrieval from the databases (Appendix 2).

Databases

A number of electronic databases and search engines will be searched to locate relevant

studies. (Appendix 3). It is acknowledged that the identification of qualitative research in

electronic databases is both complex and difficult (Evans, 2002). Therefore, secondary

references will be searched to locate further studies as well as relevant conference

proceedings. Attempts will be made to contact the authors, experts, and groups that might

have an access to relevant published and unpublished data. Contacts already have been made

with Dr Julia Botsford (Dementia UK), Professor Vanessa Burholt (University of Swansea),

Dr Rosalind Willis (Southampton University), Christina Victor (Brunel University), Mrs Shipa

Khan (Portsmouth Bangladeshi Community Development Worker), and Mr Enayet Sarwar

(Bangladeshi Care Home Manager, London).

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4.2.2 Methods of the review

Study selection

Two researchers will independently review all potentially relevant articles to determine

whether an article fulfilled the inclusion criteria by using JBI appraisal tool (Appendix 4).

Data extraction

Data extraction will use the EPPI-Reviewer 4 programme, to keep track of studies during the

review. This software will record the bibliographic details of each study considered by the

review, where studies were found and how, reasons for their inclusion or exclusion,

descriptive and evaluative codes and text about each included study, and the data used and

produced during synthesis (Rees, Oliver, Woodman, & Thomas, 2011). Two reviewers (MH &

AD) will independently assess the data against the inclusion criteria at abstract stage,

discussion regarding differences will follow and agreement prior to data extraction. Where

agreement cannot be reached a third reviewer may be involved (YH).

4.3. Discussion

As mentioned earlier, there are several available qualitative synthesis methodologies. The

reason for choosing the JBI method is because this is the only method that has aligned itself

with the philosophy of pragmatism. Moreover, outcome of this synthesized statements refer

to ‘line of action’ that inform decision-making at the clinical or policy level based on the utility

of the synthesis (Hannes & Lockwood, 2011). Meta-aggregation approaches are specifically

designed to address the needs of policy makers and practitioners in health care. Since South

Asian people with dementia including Bangladeshis are described as hidden population

therefore, it is anticipated that meta-aggregation will be a very useful approach to address

our research questions. Nonetheless, meta-aggregation will help policy-makers and

practitioners to make decisions for their policies, programmes or projects towards this hidden

population.

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PART TWO

5. Primary research – qualitative research

As there is currently no dementia research among Bangladeshi elderly living in the UK,

qualitative research will be utilised. Qualitative research is particularly useful for exploratory

research where little previous research has taken place to capture the meaningful

experiences and life values, explore the attitudes, perceptions of persons with dementia and

without dementia (Beuscher & Grando, 2010). Utilising the data collection method of semi-

structured in-depth interviews we will seek to answer the following psychosocial questions:

(1) What are the range of views about dementia, perceptions, beliefs, and experiences of

older Bangladeshi people with and without dementia, their families and carers (formal and

informal)? And (2) What are the potential barriers to diagnosis or other factors associated

with missed opportunities for dementia diagnosis and accessibility to services? The purpose

of interviewing those older persons without dementia is to explore issues of knowledge,

perception and attitudes towards dementia in order to compare and contrast these views

with those who have dementia or caring for somebody with dementia.

5.1. Data collection The data collection in this proposed study will be qualitative semi-structured in-depth

interviews. Semi-structured interview is a term that covers a wide range of types, but typically

refers to a context in which the interviewer has a series of topics to guide the discussion.

Moreover, in semi-structure interview the sequence of topics is not set and the participant

encouraged to questions that are in the general form of an interview guide but is able to vary

the sequence of questions (Gill, Stewart, Treasure, & Chadwick, 2008).

5.2. Sampling

Knowing how many participants to interview is difficult to pre-determine in qualitative

research. However, by using a combination of purposive (with pre-defined inclusion criteria)

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and snowball sampling (whereby those recruited suggest others that might be interested in

taking part; it is a particularly useful recruitment strategy for hard to reach populations) it is

anticipated that approximately ten participants will be necessary to be recruited from each

of the groups (a-d above). It is anticipated that characteristics such as representation of both

males and females, upper and lower age range together with broad range of social class will

be sought to ensure maximum variation of experience.

5.2.1. Recruitment For different reasons Bangladeshi people are sometimes suspicious of authority so having a

researcher from their own background may help give them confidence (Hossain, 2012).

Access to the respondents will be gained by voluntary organization, e.g., Bangladesh Welfare

Association (BWA), Community Development Work, Mosques & Islamic Centres. Several

meetings have been set up with the community development workers in Portsmouth and

London. In principle, informal agreement is in place, contact has been made with local

community leaders, and Bangladeshi shop owners agreeable to display information about the

study. Nearer the start of the project, they will be informed by a formal letter highlighting

about the importance of this proposed study. However, it is likely the researcher will read and

explain the information of the letter to those who are unable to read.

5.3. Data analysis The interviews will be recorded and transcribed verbatim using a portal audio recording

machine. As the majority of Bangladeshi older people difficulties understanding and

describing problems in English, conducting research in Bengali will help them to understand

the interview and answer them adequately. Therefore, the research will be conducted in

Bengali as the researcher is from Bangladesh himself. However, researcher will remain

cautious that his personal interest will not bias the study. Thematic content analysis will be

used to interpret the data. Qualitative approaches are incredibly diverse, complex and

nuanced (Holloway and Todres, 2003 cited in Braun & Clarke, 2006, p. 77), however, thematic

analysis provides a useful foundational method for qualitative analysis. Repeated reading of

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the transcripts will be adopted to identify a number of recurring concepts which will be

presented as themes. In qualitative methods thematic data analysis is one of the hallmarks to

search for themes in human experience (Gubrium & Sankar, 1994). Among its many benefits,

thematic data analysis directs representation of an individual’s own point of view and

descriptions of experiences, beliefs, and perceptions. Nonetheless, qualitative research

software NVIVO 9 will be used for the coding, analysis and storage of the data to provide a

systematic and transparent approach. All data will be stored on a password-protected

computer with restricted access.

5.4. Ethics and governance

Ethical approval from local City Council and Faculty of Science as well as from the University

ethics committee will be sought (issues of confidentiality, consent, anonymity, safety, etc will

be addressed) before approaching the participants. Researcher will be complying with the

data protection policy issued by the University, and with the appropriate codes of practice

issued by their professional association. Moreover, I will ensure that I have read and applied

relevant procedures in line with the Mental Capacity Act 2005 to ensure protection of

vulnerable people. I am also seeking further information on including of patient and public

involvement (PPI) and have accessed several documents including the National Institute for

Health Research’s (NIHR) documentation on PPI. I have not, today made suitable contacts.

However, at this stage, I feel consumer input will be invaluable for ensuring that the

information sheet is relevant and acceptable and may be useful for assisting in recruitment

which is likely to prove challenging.

5.5. Outcomes To our knowledge, this is the first study that will simultaneously explore the perspectives of

Bangladeshi people with dementia. Therefore, it is hoped that outcome of this research will

help to understand thus the experience of the people with dementia and their carers, families

in an immigrant societies with a much smaller minority population in United Kingdom.

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6. Timetable

The timetable is likely to have two parts e.g., part one & two. A GANNT chart was prepared

at the start of this PhD programme (Appendix 5). It is expected that the thesis will be

submitted by early in 2015.

7. Resource needs and funding

This research has received no specific grant from any funding agency in the public,

commercial, or not-for-profit sectors. Research and additional costs have been met by the

student. Regarding the researcher, funding is required for travel and subsistence for research

conferences, workshops, and seminars.

8. Research progress

In order to provide with a first publication, at the first stage, a synthesis of qualitative research

will be completed and for which we will, firstly seek publication in Advances in Mental Health.

8.1. Stage one

The protocol is written, the search strategy well defined and executed across nine databases.

I have identified 2514 titles through various sources (Appendix 6). After removing duplicates,

I screened 1260 papers by abstracts or full text versions. Of the 1260 studies screened, I

excluded 1082 from further evaluation for reasons detailed in Appendix 6. From 178, I could

not obtain 13 papers which were subsequently ordered through Inter-library loan; currently

I have identified 15 papers at this preliminary stage for methodological quality assessment.

All papers have been entered into the EPPI-Reviewer database, those entered as “excluded”

have been documented with the rationale for exclusion. For all potential “inclusion” papers I

have indicated why these are likely to be relevant. I am currently waiting for the other

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reviewer (AD) to independently screen the papers before discussion takes place, and final

papers selected.

As part of first stage’s progress, data synthesis of the included studies is left still to be

completed. Therefore, data synthesis of the included studies will be carried out by three-step

approach (figure 2):

Step 1: Identifying findings

Step 2: Grouping findings into categories; and

Step 3: Grouping categories into synthesized findings

Figure 2: The Steps in Meta-Aggregation

In order to pursue this, before carrying out data synthesis, findings and categories assignment

rules will be established in the EPPI-Reviewer 4 software. These decisions and their rationale

will be documented in the systematic review report in order to implications for practice,

which will be followed by the stage two of this research.

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8.2. Stage two

Before I go out in the field to collect data, final decisions on research design, interview

schedule and recruitment strategy will need to be in place followed by ethical approval.

Already significant achievements have been made in contacting potential collaborators with

this proposed research work (see section on recruitment above). This research has received

a significant interest from the Bangladeshi community as well as the research community,

although not without its challenges, of a really useful and interesting research project. Several

meetings have been set up with the community development worker in Portsmouth and

Bangladeshi care home manager in London. Moreover, I have attended the ESRC Seminar

Series 2012-14 on Ageing, Race and Ethnicity and presented our research poster in London

on 8 Nov, 2012.

The research is on-track in terms of timetable and training. Nonetheless, I have benefitted

from having a clear supervisory team. Recently, an important link has built with Dr Karan

Jutlla, who will be joining the supervisory team as third supervisor. Dr Karan Jutlla is a Senior

Lecturer, for Dementia Studies at the University of Worcester. Dr Jutlla is very happy to be

part of the team and looking forward to helping us move this very important research area

forwards. Dr. Jutlla will join the supervisory team meetings, approximately every three

months by telephone conference but in between times will be kept informed of all other joint

supervisory meetings and progress. I have kept a diary and detailed supervisory meeting

reports uploaded on Skills Forge account.

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9. Research training

9.1. Prior qualifications and training

(Appendix 7)

My first qualitative research project was “the lives of working children in Bangladesh”.

Secondly, my MA dissertation study at Middlesex University, London was carried out

among Bangladeshi older people in London by using qualitative semi-structure

interviews. Later I published this as a book.

9.2. GSDP workshops and subject-specific training I have already attended Graduate school Development Programme (GSDP) 21 workshops

relevant to my research studies (Appendix 8). I have also attended 9 Graduate Students

Professional Development (GPROF) programmes organized by Department for Curriculum

and Quality Enhancement (DCQE).

9.3. Seminars and conferences attended I have attended a number of internal and external seminars and conferences in order to hear

more about health services research, in particular, which related to ethnic minorities, older

persons with dementia (Appendix 9).

9.4. Presentations

I have presented our research poster in several seminars and conferences in the UK.

I have attended ESRC funded seminars at London and presented our research poster.

There we received greater audiences’ interest on the topic.

I have presented our poster at the ageing network and PEOPPLE project, which was

attended, by the public as well as academics and students from the university.

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Our research poster was one of those that had been shortlisted to present at research

student conference organized by GSDP.

10. Conclusion

Anecdotal evidence suggests that the current practice of assessment of dementia in

Bangladeshi communities in the UK is below the standard level but currently there is little

primary research to explore the reasons for or barriers to accessing current dementia

services. Culture-sensitive dementia services appear to be lacking and the specialized

dementia services do not appear to be prepared for an increase in demand for the assessment

and care of patients from different cultural and linguistic backgrounds. There is pressing need

to increase health professionals’ and policy makers’ awareness of the implications regarding

cross- cultural assessment of dementia, and there appears to be an urgent need to develop

appropriate assessment methods for patients from the South Asian including Bangladeshi

ethnic minority populations in the UK. It is believed that this piece of research will look at the

potential implications of this Bangladeshi ageing population with dementia and without

dementia through academic work and social policy. Nonetheless, it is hoped that this study

will explore the concept of dementia in depth and examine the impact of stigma on

individuals, caregivers, and communities.

19

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12. Appendices

Appendix 1: Comparison of commonly used synthesis approaches in healthcare research

Approach Purpose Search strategy

Critical appraisal

Method of synthesis

Outcome

Meta-aggregation

To aggregate findings of included studies

Comprehensive, with a detailed search strategy

Required, using a standardized critical

Aggregation of findings into categories and of

Synthesized statements represented as lines of action informing

23

required at protocol stage

appraisal instrument

categories into synthesized findings

practice or policy in the form of a standardized chart

Meta-ethnography

To generate new knowledge/theory, using process of interpretation

Not comprehensive, seeks saturation- theoretical sampling

Opposed, includes all studies that provide insight into the phenomena of interest

Refutational and/ or reciprocal translation, line of argument synthesis

Higher order interpretation of study findings

Critical interpretive synthesis

To deconstruct research traditions/ theoretical assumptions as a means of contextualizing findings

Identification of potentially relevant papers to provide a sampling frame

Quality judged as the extent to which it informs theory

Identification of recurrent themes and development of a critique (on the included literature) that informs sampling, selection and theory generation

Reconceptualization of phenomenon based on critique of epistemological and normative assumptions of the literature

Thematic synthesis

To aggregate findings of original research papers

Usually comprehensive, although open to the argument of conceptual saturation

Use of a framework or checklist for critical appraisal

Line-by-line coding, development of descriptive and analytical themes (placed in an external theoretical framework)

Summary of findings of primary studies under thematic headings

Meta-study

To seek and reveal similarities and differences and build new interpretations

Comprehensive, including grey literature sources

Recommended, although open to inclusion based on relevance of

Comprehensive framework; meta-data-analysis/meta-method/meta-

Mid-range theory, with direct application for particular areas of practice

24

particular studies

theory/meta-synthesis

Content analysis

To analyse, then summarize content of papers, counting and tabulating the occurrence of themes

Usually comprehensive with predetermined search strategy

Not specified

Coded data categorized under thematic headings, counted and tabulated

Summary of primary study findings and their rate of occurrence under thematic headings

Grounded theory

Generation of theory

Not comprehensive, seeks saturation- theoretical sampling

Not specified

Constant comparative method

Generalizable explanations for phenomenon under study

Adapted from: Hannes & Lockwood 2011

Appendix 2: Search strategy

Groups Terms

Group A

Phenomenon of interest

1. Attitudes

2. Barriers

3. Experiences

4. Impacts

5. Issues

6. Opportunit*

7. Understanding

8. OR/ 1-7

Group B

Types of Dementia

9. Alzheimer’s disease

10. Creutzfeldt-Jakob disease

11. Delirium

12. Dementia

25

13. Dementia diagnos*

14. Dementia with Lewy bodies

15. Fronto-temporal dementia

16. HIV-related cognitive impairment

17. Huntington's disease

18. Korsakoff's syndrome

19. Mild cognitive impairment

20. Mixed dementia

21. Normal pressure hydrocephalus

22. Parkinson's disease

23. Vascular dementia

24. OR/ 9-23

Group C

Elderly Group

25. Age*

26. Elder*

27. Geriatric

28. Later life

29. Older adults

30. Patients

31. Pensioners

32. Seniors

33. OR/ 25-32

Group D

Carers groups

34. Care*

35. Carer

36. Community care

37. Family members

38. Formal care

39. Informal care

40. Primary care

41. Service

42. Spouse

43. Support

44. OR/ 34-43

Group E

South Asian groups including Bangladesh

45. Bangladesh*

46. Bhutan

47. Black and minority ethnic groups

48. BME

49. Ethnic*

50. Immigrants

51. India*

52. Maldives

53. Migrants

54. Nepal*

55. Pakistan*

56. South Asia

57. Sri Lanka

58. OR/ 45-57

Group F

Qualitative approaches

59. Action research

60. Conversational analysis

61. Descriptive qualitative research study

62. Discourse analysis

26

63. Ethnography

64. Exploratory stud*

65. Focus groups

66. Grounded theory

67. Interview

68. Narrativ* 69. Observational method*

70. Participant observation

71. Phenomenology

72. Qualitative

73. Qualitative research method

74. Qualitative stud*

75. Qualitative synthesis

76. Thematic analysis

77. OR/ 59-76

A AND B AND C 78. 8 AND 24 AND 33

A AND B AND C AND D 79. 8 AND 24 AND 33 AND 44

A AND B AND C AND D AND E 80. 8 AND 24 AND 33 AND 44 AND 58

A AND B AND C AND D AND E AND F 81. 8 AND 24 AND 33 AND 44 AND 58 AND 77

B AND E 82. 24 AND 58

B AND C AND E 83. 24 AND 33 AND 58

B AND C AND D AND E 84. 24 AND 33 AND 44 AND 58

B AND C AND D AND E AND F 85. 24 AND 33 AND 44 AND 58 AND 77

Appendix 3: Databases

Search Engines Electronic Databases Time Descriptions

Web of Knowledge

Web of Science 1970- present

Literature search includes the sciences, social sciences, arts, and humanities, and across all

disciplines

MEDLINE 1950- present

The Web of Knowledge version of MEDLINE cover basic

biomedical research and the clinical sciences. Major subject

areas include nursing, dentistry, veterinary medicine,

pharmacy, allied health, and pre-clinical sciences. MEDLINE also covers life sciences that

are vital to biomedical practitioners, researchers, and

27

educators, including some aspects of biology,

environmental science, marine biology, plant and animal

science as well as biophysics and chemistry

EBSCOhost

CINAHL 1981- present

CINAHL, the Cumulative Index to Nursing and Allied Health

Literature, is the most comprehensive resource

covering the research literature of for nursing and

allied health subjects and social works.

E-Journals - Covers thousands of electronic

journals

SocINDEX 1895- present

Wide ranging coverage of Social Science journals with

strengths in Sociology, Criminology and Social Work.

Details of new articles are added weekly

MEDLINE 1966- present

Covers Biology; Biomedical Sciences; Radiography; Health Sciences; Sports and Exercise

Science; Pharmacy; Psychology

ProQuest

PsycINFO 1967- present

PsycINFO is a bibliographic database covering the research literature in the psychological, social, behavioural, and health sciences. It includes material of relevance to psychologists and professionals in related fields

such as psychiatry, management, business,

education, social science, neuroscience, law, medicine,

and social work

MEDLINE

Covers Psychology; Sports and Exercise Science; Pharmacy;

Health Sciences; Radiography; Biology; Biomedical Sciences

British Library British Library EThOS -

Thesis: a database of digitised UK doctoral theses offering

free online access to theses of participating Higher Education

institutions

Websites and gateways: Additional literatures search will be developed via following relevant websites and gateways:

28

Age UK

Alzheimer Europe

Alzheimer Scotland

Alzheimer’s Research UK

Alzheimer’s society

Alzheimer's Disease International

British Medical Association

Dementia Friends

MIND

Rethink Mental Illness

Time to Change

29

Appendix 4: JBI Qualitative Assessment and Review Instrument (QARI) Critical Appraisal Tool

30

Appendix 5: Gannt chart for PhD study from Feb 2012

* Initial thesis preparation and Gradual School Training (workshops) has been started since

the beginning of this research, but I will be seeking additional training as required, including

viva preparation.

02/12 08/12 03/13 09/13 04/14 10/14 05/15

PART ONE

Write a protocol for qualitative synthesis of meta-…

Conduct a systematic search of qualitative literature

Set up search alerts and endnote reference database

Enter literature search results in EPPI-reviewer 4…

Literature inclusion and exclusion criteria

Extraction of data

Synthesis of qualitative studies

Publication

PART TWO

Final draft research proposal submission

Ethical and governance approval

Locals contact set up

Start recruitment and data collection

Data entry, transcription and analysis

Produce qualitative papers

Thesis and viva preparation *

Write up

Graduate school development training *

Provisional Timetable for Proposed Research

31

Appendix 6: A Flowchart of search results

Search Engines

Databases Documents

found

Web of Knowledge

Web of Science

n = 381

MEDLINE n = 321

EBSCOhost

CINAHL n = 121

E-Journals n = 170

SocINDEX n = 168

MEDLINE n = 182

ProQuest PsycINFO n = 554

MEDLINE n = 611

British Library

British Library EThOS

n = 6

Total n = 2514

Potentially relevant papers identified by electronic database

search (n = 2514)

Papers screened by titles and abstracts

after removing duplicates (n = 1260)

Duplicates removed:

EndNote X5

(n = 673) +

EPPI-Reviewer 4 (n = 581)

Total

(n = 1246)

Papers excluded after evaluation of titles and abstracts

(n = 1082)

Papers retrieved for detailed examination

(n = 178)

Papers excluded after review of full

paper (n= 163) Reasons:

Inclusion criteria not met: 31 No full texts available: 13 Not primary research: 13 Excluded on

participants: 12 Not qualitative

studies: 37 Review article: 57

Papers included in systematic review

(n= still to be completed)

Papers assessed for methodological quality (n=15)

32

Appendix 7: Prior qualifications and training Honours in Sociology, University of Rajshahi, Bangladesh. 1999-2002

Masters in Sociology, University of Rajshahi, Bangladesh. 2002-2004

MA Health and Social Care, Middlesex University, London, UK. 2008-2010

Appendix 8: Graduate school workshops and subject-specific training GSDP development summary: Training and Courses

S.N. Start date Title Code Cat. Booking Attended

1 06-Feb-2012 Preparing for your

Major Review GSDP137 RDF-C

On the waiting list

1/1 (promoted from waiting

list)

2 13-Feb-2012

From Major Review to successful

submission

GSDP138 RDF-B Place

confirmed 1/1

3 24-Feb-2012 Library searching skills for science

researchers GSDP130 RDF-A

Place confirmed

1/1

4 27-Feb-2012

Principles of

Research Design GSDP101 RDF-A

Place confirmed

1 / 1

5 28-Feb-2012

Introduction to

Statistics (1) GSDP103 RDF-A

Place confirmed

1 / 1

6 01-Mar-2012 Getting started with qualitative

research GSDP107 RDF-A

Place confirmed

1 / 1

7 02-Mar-2012 Introduction to

NVivo8 GSDP110

RDF-A

Place

confirmed 1 / 1

8 07-Mar-2012 Qualitative data

Analysis with NVivo 9

GSDP124

RDF-A

Place Confirmed

1 / 1

9 08-Mar-2012

Writing and reporting

qualitative data analysis

GSDP126 RDF-A Place

Confirmed 1 / 1

10 19-Mar-2012 Managing your references with

GSDP134 RDF-A Place

Confirmed 1 / 1

33

EndNote Web

11 23-Mar-2012

Managing your references with

EndNote

GSDP133 RDF-A Place

Confirmed 1 / 1

12 28-Mar-2012

Project Managing

Your PhD GSDP164 RDF-B

Place Confirmed

1 / 1

13 22-May-2012

Preparing for your

Major Review GSDP137 RDF-C

Place Confirmed

1 / 1

14 23-Oct-2012

Writing and revising your

thesis GSDP140 RDF-D

Place Confirmed

1 / 1

15 15-Nov-2012

Getting published in print and on

the web

GSDP171 RDF-D Place

Confirmed 1 / 1

16 04-Dec-2012

Designing ethical research and preparing for ethical review

GSDP114

RDF-C Place

Confirmed 1 / 1

17 05-Dec-2012

Qualitative data analysis: hands-on

introduction to NVivo 9 software

GSDP174 RDF-A Place

Confirmed 1 / 1

18 10-Dec-2012

Presentation skills for research

students GSDP176 RDF-B

Place Confirmed

1 / 1

19 16-Jan-2013

Making best use of PowerPoint /

Prezi

GSDP177 RDF-D Place

Confirmed 1 / 1

I have also attended following two professional doctoral teaching sessions at the University’s

school of health sciences and social work for the professional doctorate and conducted by Dr

Ann Dewey.

20. Data collection methods, data analysis: Framework approach

21. Searching for Qualitative research, critical appraisal of qualitative research

22. Nonetheless, I have also attended 9 Graduate Students Professional Development

(GPROF) programmes organized by Department for Curriculum and Quality

Enhancement (DCQE).

34

Appendix 9: Seminars and conferences attended

SHSSW Research Seminars 2011 (Wed 14th Dec ‘11, JW Rm 0.322 Dr Ann Luce);

Uni. of Portsmouth Research Conference 25 Jan 2012, Richmond Building 9.30am-

4.30pm;

Attended the graduate school research student conference on 4th Oct 2012

Received one of the Postgraduate and Early Career Researchers Bursaries to attend

ESRC Seminar Series 2012-14 on Ageing, Race and Ethnicity in London, Swansea and

Worcester. Later that bursary news put up on the school website

http://www.port.ac.uk/departments/academic/shssw/latestnews/title,168603,en.ht

ml.

Attended Ageing Network and PEOPPLE project celebration conference 2012 and

presented our research poster on 23 Nov, 2012 at John Pounds Centre, Portsmouth.