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Contents lists available at ScienceDirect

Primary Care Diabetes

j o u r n a l h o m e p a g e : h t t p : / / w w w . e l s e v i e r . c o m / l o c a t e / p c d

riginal Research

hat’s the worry with diabetes? Learning from thexperiences of White European and South Asianeople with a new diagnosis of diabetes

mma Wilkinson, Gurch Randhawa ∗, Maninder Singhnstitute for Health Research, University of Bedfordshire, Luton, UK

r t i c l e i n f o

rticle history:

eceived 16 May 2013

eceived in revised form

1 October 2013

ccepted 25 November 2013

vailable online xxx

eywords:

ype 2 diabetes mellitus

outh Asian

atient experience

iagnosis

uality

a b s t r a c t

Aims: An exploration of diabetes diagnosis from the patient perspective is important for

understanding inequalities in access and developing quality care through the diabetes care

pathway.

Methods: South Asian and White European patients over 16 years with a recent (<1 year)

diagnosis of diabetes were recruited from 18 GP practices in three UK locations – Luton,

West London and Leicester. A semi-structured qualitative interview was conducted with

47 patients, 28 South Asian and 19 White European. Interview transcripts were analysed

thematically and comparisons made between the White and South Asian groups.

Results: People expressed a range of emotions at diagnosis. Although many participants

were familiar with diabetes through family and friends and were undergoing monitoring for

comorbidities, they were surprised and upset to be diagnosed. In contrast, a small number

reported how they did not worry about their diabetes diagnosis and others highlighted the

different public perceptions, which exist about the seriousness of diabetes in relation to a

ccess

are pathway

diagnosis of cancer.

Conclusions: Attitudes to diagnosis of diabetes varied on an individual basis and not directly

by ethnicity. Practitioners need to be adaptable to work with individuals in order to facilitate

ivers

ry Ca

[10].

access and support d

© 2013 Prima

. Introduction

he rising prevalence of diabetes in the UK [1] is well doc-mented and we know that South Asians populations haveigher relative risk of diabetes and kidney complications [2,3]ecause of genetic, lifestyle or access factors [4,5]. Research to

Please cite this article in press as: E. Wilkinson, et al., What’s the worry wSouth Asian people with a new diagnosis of diabetes, Prim. Care Diab. (201

tratify and understand population needs based on ethnicityan help us to understand better the full extent of the chal-enge of Type 2 diabetes mellitus for those who commission

∗ Corresponding author at: Diversity in Public Health, University of BedK. Tel.: +44 1582 743797; fax: +44 1582 743918.

E-mail address: gurch.randhawa@beds.ac.uk (G. Randhawa).751-9918/$ – see front matter © 2013 Primary Care Diabetes Europe. Puttp://dx.doi.org/10.1016/j.pcd.2013.11.006

e populations.

re Diabetes Europe. Published by Elsevier Ltd. All rights reserved.

or provide diabetes care [6,7], particularly as ethnic minoritiesare predicted to make up 43% of the UK population by 2056[8]. Previous studies have shown that there can be barriers tohealthcare access that relate to ethnicity or culture which cul-turally competent healthcare providers seek to mitigate [9] inorder to provide equitable access and quality in diabetes care

ith diabetes? Learning from the experiences of White European and3), http://dx.doi.org/10.1016/j.pcd.2013.11.006

fordshire, Putteridge Bury Campus, Hitchin Road, Luton LU2 8LE,

Ethnicity describes a consciousness of belonging to aparticular group based on commonality of family originand culture of shared values and beliefs which is socially

blished by Elsevier Ltd. All rights reserved.

ARTICLE IN PRESSPCD-353; No. of Pages 6

t e s

2 p r i m a r y c a r e d i a b e

constructed [11] and which could influence attitudes towardshealthcare and self management. Cultural competency is theawareness and application of understanding of how socio-cultural factors interact at multiple levels to influence health[12]. For inequalities in access to be reduced cultural compe-tency of services must increase and research, which exploresthe experience of care from the patient perspective can helpto inform service development.

The combination of quantitative and qualitative datawhich capture the processes of care and the experience ofpeople who live with this complex chronic disease havethe potential to help all stakeholders understand how tomaximise access to effective diabetes prevention and man-agement. Policy guidance has increasingly emphasised thefundamental role that people with diabetes play in their owndiabetes management [13,14], not purely in terms of increas-ing patient empowerment and improving experience, butbecause of the potential for cost savings [15] in the face ofincreasing diabetes prevalence rates and care costs in the UKof managing diabetes [16,17] and its complications particularlyamong ethnic minorities [18].

The fact that earlier studies show that by the time they arediagnosed with diabetes, half the people with diabetes alreadyshow signs of complications and complications and onsetof diabetes may occur 5–6 years and 10 years prior to diag-nosis respectively [19,20] highlights the importance of earlydiagnosis and care around diagnosis for ongoing self manage-ment which quality initiatives through the noughties soughtto implement [21–23].

The Diabetes Care Pathway Study compared access andexperience of diabetes care in White European (WE) and SouthAsian (SA) groups at three locations in the UK: Leicester, Lutonand West London. By using mixed methods and applying acare pathway design to the study we were able to explore andmake some evaluation of the impact of the quality initiativesintroduced and make some suggestions for whom and howdiabetes care could be further improved.

This paper describes patient experience early on in thepathway around the period of diagnosis, which is an importanttime for people to receive information about the condi-tion in an appropriate and person centred way [21,23,24].Policy drivers for patient experience work support the useof patient experience data to improve quality of servicesin the evolving NHS through attention to the key ele-ments of quality, access, cultural sensitivity, shared decisionmaking, information and communication amongst otherpatient centred objectives [25]. The premise for this ele-ment of the larger care pathway study was, that if qualitystandards to reduce risk, improve identification, promoteconcordance and deliver care to optimise diabetes controlwere being achieved, patient’s experience data would reflectthis.

Patient experiences of diabetes diagnosis and care in2007, following introduction of quality improvement ini-tiatives: national service frameworks for diabetes andkidney disease and the Quality Outcomes Framework

Please cite this article in press as: E. Wilkinson, et al., What’s the worry wSouth Asian people with a new diagnosis of diabetes, Prim. Care Diab. (20

(QOF) during the preceding years are presented and dis-cussed in relation to improving access to quality diabetescare. Broad recommendations are made for NHS diabetescare.

x x x ( 2 0 1 3 ) xxx–xxx

2. Methods

The Care Pathway Project was implemented at 3 study sites:Leicester, Luton and West London (Ealing) through 2006 to2008. The inclusion of study sites was based on the sociode-mographics of the local population to enable the inclusionof patients and providers to patients from the predominantSouth Asian population groups in the UK i.e.: Indian Gujarati;Indian Punjabi; Pakistani, and Bangladeshi.

The overarching study combined audits at two stages inthe diabetic renal disease care pathway: at diabetes diagnosisand at referral to specialist renal services in 2004 and 2007,with qualitative interviews with patients and care providersin 2007. This paper concerns the interviews with patients whomade up the audit sample at diabetes diagnosis in 2007. Theaudit element has been previously reported [26,27].

2.1. Recruitment and consent

The patients for interview were recruited by participatinggeneral practitioners who themselves had been recruited toprovide as representative sample as possible in terms ofpractice population demographics, size, type of practice andQOF achievement scores. The sample selection of GP practiceswas purposive and pragmatic and the analysis and inter-pretation of results takes into account study limitations andexternal validity in relation to sample selection.

It was estimated that up to 20 patients (10 White and 10South Asian) would be recruited at each site (up to 60 in total),and that this would collectively provide: a representative sam-ple of newly diagnosed patients across the practices, enableat least one patient to be recruited from each participatingpractice and would be an adequate sample for the proposedanalysis [28,29] and fit within the resource limitations of thestudy.

The project was approved by the NHS Local Research EthicsCommittee (LREC). Recruitment took place in 2008. Practicestaff conducted a search of practice database to identifypatients who fulfilled the inclusion criteria (<16 years, of WhiteEuropean or South Asian ethnicity and diagnosed with T2DMbetween 1st January and 31st December 2007). All patientswho fulfilled the criteria were sent a letter with response slip,patient information sheet and stamped addressed envelopefor response. All recruitment paperwork had been approvedby the LREC. Those who returned the response slip indicat-ing that they were willing to take part in an interview werefollowed up with a telephone call from one of the researchteam (including bilingual researchers as required) to answerany question the potential participant might have and, if theperson wished to take part, to arrange the interview.

2.2. Data collection

A semi-structured questionnaire schedule was developedspecifically for the purpose of this study. This was devised

ith diabetes? Learning from the experiences of White European and13), http://dx.doi.org/10.1016/j.pcd.2013.11.006

by collaborating researchers (social scientists and clinicians)and comprised a series of questions with prompts coveringthe following broad areas: diagnosis of diabetes; symptoms;access to and experience of diabetes services; current health;

ARTICLE IN PRESSPCD-353; No. of Pages 6

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Table 1

‘I was really shocked. I didn’t think that I would fall into that categorybecause I was always really careful about what I ate but I had put onweight.’ WEM1, 54

Despite having familiarity with diabetes through theexperience of friends and family members, only 3 patientsmentioned that they had been aware of their own risk of

Table 2a

‘I cried when she said to me, yes, because that’s (sister’s death) all I couldthink of; it upsets me still now...she died at 56, heart attack, kidneyswent everything.’ WEF1, 65

‘Yes it was shock, because I saw my brother, he was really bad inAmerica...He had the diabetes, you know, he was in the last stages.’

p r i m a r y c a r e d i a b e t

elf-management and support; access to information andommunication. Both the patient information sheet and thereamble to the interview asked patients to recount theirxperience, in their own words, and the interview scheduleas intended to be used as a guide and to ensure the main

reas were covered during the course of the dialogue. One tone interviews were conducted by researchers in the patient’sreferred venue, invariably the patient’s home, and in theatient’s language of choice, employing bilingual researchershere this was required. Interviews lasted between 40 min tone hour and were tape-recorded. The resulting recordingsere transcribed verbatim into Word documents.

.3. Data analysis

nterview transcripts were repeatedly read through, an initialramework of key themes (initial thematic categories) was for-

ulated and interviews were analysed using these themess well as others as they emerged. Although broad interviewreas had been determined a priori these themes were iden-ified retrospectively through the analysis process. Thematicpproach to analysis is a widely used process in the analysis ofualitative data [29,30] and was used in this research to iden-ify a framework of themes and sub themes, which relate tohe access and quality of healthcare [31]. Nvivo 7, a computeroftware package for qualitative research was used to facilitateata coding and retrieval. The lead researcher (EW) conductedhe coding and data analysis in collaboration with bilingualesearch interviewers who provided feedback on individualnterviews and the chief investigator (GR) who had oversightf the process. Analysis of data from some of these themes

paragraph headings) forms the basis of the following resultsnd discussion.

.4. Ethical approval

his study was given ethical approval by Bedfordshire NHSesearch Ethics Committee in June 2005 – REC reference num-er: 05/Q0202/24.

.5. Limitations

he patient sample came from the sample for an audit of allatients diagnosed with T2DM during 2007 at 18 GP practices

n Leicester, Luton and West London that had been purpo-ively recruited to include the variety of GP practices at thoseocations.

Potential interviewees were approached by letter and nonesponders were not followed up so that it is possible that thenterview sample achieved was not representative of the auditopulation. Ethnic minority groups tend to be under repre-ented in clinical health research and it is possible that weid not recruit patients who are less engaged with the healthystem and experience the most barriers to access. This coulde the case for both the groups in this research and as writtenecruitment literature was used in the first instance and was

Please cite this article in press as: E. Wilkinson, et al., What’s the worry wSouth Asian people with a new diagnosis of diabetes, Prim. Care Diab. (201

ot translated from English there was a potential barrier foreople unable to read English.

The study was an exploratory study, which considered eth-icity, which in itself is a complex concept. It was not possible,

‘I was just shocked, thinking, because I’m so healthy. And I thought, “ohmy God, it’s like the end of me”, kind of, you know, that shock.’ SAF1,54

within the constraints of size and resources together withincomplete and inaccurate recording of ethnicity in primarycare, to achieve a sample, which was able to fully explore com-parisons based on ethnicity over and above the broad SA andWE categories used in this study.

Although interviews were conducted in the participant’spreferred language, by bilingual interviewers where necessaryin order to obtain quality data, it is possible that there was biasthrough translation. Many of the interviews and all the the-matic analysis were conducted by an experienced researcherbut bias could also have occurred through misinterpretation.

This paper reports one element of the larger diabetic renaldisease care pathway study, which was a mixed method studyinvestigating access and cultural competency on several lev-els. There are limitations to the different elements of theresearch but the exploratory focus of the work and the expe-rience of the research team go some way to mitigate these.

3. Results

47 people (28 SA, 19 WE) with a recent (<1 yr) diagnosis ofT2DM were recruited and interviewed. South Asian partici-pants were 12 years younger at diagnosis (mean age 50.6 years,range 34–77 years) compared to White participants (mean age63.3 years, range 43–85 years). This sample included slightlymore men (4.7%) than women relative to the proportion withinthe original audit sample but the proportion of WE to SA in theinterview sample was similar: 59.6% vs 54.1% SA and 40.2% vs45.9% WE.

In recalling their reactions to diabetes diagnosis partici-pants described their shock and surprise (Table 1):

Some female respondents’ emotional and negative reac-tions related to familiarity and previous experience of diabetesthrough family members, whilst the men in the sampledescribed their reaction in less emotional terms than thewomen and as a disappointment, in all but a very few casesthe diagnosis was unexpected (Tables 2a and 2b):

ith diabetes? Learning from the experiences of White European and3), http://dx.doi.org/10.1016/j.pcd.2013.11.006

SAF2, 58‘...when I found out at the beginning I was really upset for few days to

tell you the truth. Because my mum’s got diabetes and she’s reallystruggling, I thought oh god, I don’t need that same things.’ SAF3, 54

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Table 2b

‘The diabetic doctor came and said I was diabetic. I was verydisappointed as I hated needles, I am used to them now but at first itwas hard.’ WEM2, 60

‘I must say that I was very disappointed when I found out I had diabetes,

Table 5

‘I think it was about 2 months later, if that, you know, and I think I stillhaven’t got, sort of, you know, I haven’t told myself that I have got it,you know, I’m still in denial...I still keep thinking “they must have gotit wrong” WEF2, 54

‘...and he did one blood test and based on that blood test he said that

I just could not believe it. I loved sugary things and would eat sweetsand chocolates nearly everyday, plus nobody else in my family haddiabetes so I was shocked to find out that I did.’ SAM1, 42

diabetes or had discussed it with their doctor prior to diag-nosis. This was in the context of 20 out of the 47, 42.5% ofparticipants, having comorbidities with ongoing routine mon-itoring through which their diabetes was diagnosed.

For the remaining 27 participants diagnosis had been madeas a result of an acute event of illness (n = 4) or by pre-senting with symptoms related to diabetes (tiredness, weightloss, thirst, frequent urination), which were picked up eitherdirectly or opportunistically during a medical encounter for adifferent medical reason (n = 21, 44.7% of participants). Only2 patients reported no discernible symptoms of diabetes buthad been identified opportunistically as having diabetes.

In contrast to the shock, upset and disappointment whichwas the most common early reaction reported, some partic-ipants described how they coped with the diagnosis by notworrying, by being resigned to the diagnosis or by not thinking

Please cite this article in press as: E. Wilkinson, et al., What’s the worry wSouth Asian people with a new diagnosis of diabetes, Prim. Care Diab. (20

about it (Table 3):Whilst others even some time afterwards were questioning

the diagnosis and describing a state of denial (Table 4):

Table 3

‘I don’t take it terribly seriously, obviously I know I have to take mymedication. I have cut down on alcohol and I don’t eat sweets. But Idon’t worry about it.’ WEM3, 67

‘At the time I thought well if I have it, I have it what can I do? My motherhad it and she was with me for two years. I gave her medication,checked her bloods, I took her to the Doctors, hospitals so I know it doesnot go away, I learnt a lot about it from then.’ SAF4, 54

‘When I get tired and run down I feel it. At the moment I am keepingmyself occupied with work and thing, I think I have put a bit of amental block to shut it out and carry on as normal. I am aware that if Iget too hyped up I can have another turn.’ WEM2, 60

Table 4

‘I know its an increasing problem but the strange thing is when I told myfriends and family they were all down and feeling bad for me but to meits not that bad – it does not feel terminal. I have had friends diagnosedand die of cancer, now to me that is a real tragedy not, what hashappened to me, I realise that mine is the initial mild stage but I don’tsee it as fatal...’ WEF3, 59

‘No, no, I don’t put in the mind to the diabetes, because if you put in yourmind you get more worse. So some people have cancer, like, so everyday they put in the mind “oh I have cancer” and second, third day...sowhat’s wrong with that, one day is going to crash. If you’re cured,that’s a cure, it’s good, it’s in the mind.’SAM3, 57

‘...some people when they find out, it’s very, very stressful for them. I’veseen one of my secretaries develop diabetes and the poor girl was intears all day long, yeah, when it was actually sort of confirmed, yeah.So, you know, they regard it as very, very sort of serious, it’s sometimespossibly, you know, being told that, you know, something equivalent tobeing told that you’ve got cancer, whatever.’ But it’s not like that; it’snot quite like that.’ SAM4, 51

your blood sugar levels are going up. When he said that I doubted itstraight away, I said “how do you know that it’s going up as you havenever done any other tests before’, SAM2, 41

The different reactions to diabetes diagnosis illustratedabove did not appear to be associated with either WE orSA ethnicity but varied on an individual basis. Moreover thedescriptions that respondents gave of other people’s reac-tions further illustrated the different attitudes held towardsdiabetes and the comparison made with cancer diagnosis(Table 5):

4. Discussion

The relative proportion of SA and WE respondents was similarto the audit sample 58%–59.6% SA and 42%–40.2% WE so thereappeared to be no particular bias in participation by eithergroup notwithstanding other barriers to participation [32].

Despite many patients having some familiarity with dia-betes through the experience of friends and family membersonly 3 patients mentioned that they had been aware of theirrisk of diabetes or had discussed it with their doctor prior todiagnosis. This is in the context of 20 out of the 47, 42.5% ofpatients having comorbidities and/or ongoing routine moni-toring, which could represent missed early opportunities forraising awareness, intervention and prevention.

Although quality improvement initiatives prior to 2007 hadresulted in increased diagnosis and monitoring [26,27] theyappear not to have resulted in increased communication andawareness with patients at risk of developing diabetes. Previ-ous studies have shown that lifestyle intervention can preventonset of diabetes but whether proactive and or screening inprimary care is feasible and effective in diverse populations isunclear [33].

People across different ethnic groups who are diagnosedwith diabetes had strong and emotional feelings of shock,upset and denial when diagnosed with diabetes. As the timearound diagnosis is an important period for patients to receiveinformation and support to help self management [23,24] itis important for diabetes services to address and supportpatient’s psychological and affective reactions in order toprovide the most meaningful and timely care. Psychologicaladjustment towards diabetes diagnosis through a screeningprocess has been seen in patients at risk of T2DM in otherstudies [34]. Although there were some potentially negativeimplications on risk perception reported, it demonstrated howstaged interaction focussed on diabetes has the potential tohelp patients positively prepare for preventive action. It alsoidentifies the challenge for healthcare providers to communi-cate information concerning diabetes and risk in a way, which

ith diabetes? Learning from the experiences of White European and13), http://dx.doi.org/10.1016/j.pcd.2013.11.006

encourages engagement in self-care and prevention.The reactions and the variety of other feelings and atti-

tudes reported in our study did not appear to be associatedwith either ethnic group. As ethnicity and culture are complex

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oncepts [35] and this exploratory study was limited by size;he broad ethnic groupings used; and the sensitivity of anal-sis that was possible. Future studies should address thentersections between these concepts in more detail in ordero understand better the experience of diverse populationsttending their GP for diabetes care.

We have suggested previously that an understanding ofoncordance is important in facilitating access to quality dia-etes care [9] and this extends to the time period beforeiagnosis when mutual understanding about diabetes andhared approach could benefit prevention and the approacho self management. It also extends to the General Practices a whole system and strategies for proactive targeting andommunicating with patients about diabetes, over and abovehe individual monitoring and support that QOF requires postiagnosis; and we are aware of a current study evaluatinghe effectiveness of a structured education programme with

otivational support to reduce the onset of T2DM as partf routine primary care for diverse populations [36]. We alsocknowledge the role that structured education programmesuch as DESMOND [37] or those locally developed can play inoth providing information and psychological support at andoon after diagnosis if they can be delivered in an accessibleay.

As our results suggest that reactions to diabetes are indi-idual rather than linked to ethnicity it is unlikely that oneize will fit all when it comes to supporting patients in self-anagement early on. A primary care workforce that can be

daptable to work with the range of reactions and attitudesowards diabetes diagnosis that people experience has theotential to encourage and support effective diabetes self care

n the future.These findings, together with those from other parts of

he Care Pathway Study suggest that although the nationalervice standards introduced prior to the study includeduality standards about prevention, information and empow-rment as part of quality diabetes care, this appears to haveeen lacking prior to and around diagnosis. The role of Gen-ral Practitioners in proactive primary prevention of patientst risk of T2DM in their population requires better under-tanding in the context of cultural competency in the evolvingHS.

. Conclusions

ealthcare encounters for pre-existing comorbidities and rou-ine monitoring had not contributed to patients’ awareness ofheir own risk of diabetes prior to diagnosis.

The reactions to diagnosis suggested that practitioners pro-iding care and support for patients around diagnosis need toe sensitive to patients’ emotional needs.

Attitudes to diagnosis of diabetes varied on an individualasis and not directly by ethnicity. Practitioners need to bedaptable to work with individuals in order to facilitate access

Please cite this article in press as: E. Wilkinson, et al., What’s the worry wSouth Asian people with a new diagnosis of diabetes, Prim. Care Diab. (201

nd support diverse populations.The role of the primary care workforce in proactive diabetes

wareness and prevention prior to diagnosis requires furtherxploration and understanding.

x x ( 2 0 1 3 ) xxx–xxx 5

Conflict of interests

The authors state that they have no conflict of interest.

Funding

This research was funded by Kidney Research UK and the BigLottery Fund.

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