BMJ Open...For peer review only An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the United Kingdom. Journal: BMJ Open Manuscript ID

For peer review only

An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the United Kingdom.

Journal: BMJ Open

Manuscript ID bmjopen-2015-010195

Article Type: Research

Date Submitted by the Author: 13-Jan-2016

Complete List of Authors: Bhattacharyya, Mimi; UCL, Primary Care and Population health Stevenson, Fiona; UCL, Primary care and population sciences Walters, Kate; University College London, Primary Care and Population Health

<b>Primary Subject Heading</b>:

General practice / Family practice

Secondary Subject Heading: Rehabilitation medicine, Cardiovascular medicine, Mental health

Keywords:

REHABILITATION MEDICINE, QUALITATIVE RESEARCH, Depression & mood

disorders < PSYCHIATRY, PRIMARY CARE, Coronary heart disease < CARDIOLOGY

For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml

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An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the 1

United Kingdom. 2

Author details and affiliations: 3

Dr Mimi Bhattacharyya1MRCP, PhD 4

Dr Fiona Stevenson1

MA (Hons), PhD 5

Dr Kate Walters1 MRCGP, PhD 6

1 Research Department of Primary Care & Population Health, University College London, Upper 7

Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF 8

9

Corresponding author details: 10

Dr Mimi Bhattacharyya 11

Research Department of Primary Care & Population Health, University College London, Upper Third 12

Floor, Royal Free Hospital, Rowland hill Street, London NW3 2PF 13

Telephone: 020 7794 0500 ext. 33997 14

Fax: 02077941224 15

Email [email protected] 16

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Word count: 4126 (quotes 1609) 18

Abstract word count: 259 19

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ABSTRACT 30

Objective: There is little research on how different ethnic groups adapt after an acute cardiac event. 31

This qualitative study explores between-ethnicity and within-ethnicity variation in adaptation and 32

psychological impact of an acute cardiac event in UK South Asian and white British people. 33

Setting: We purposively sampled people by ethnic group from general practices in London who had 34

a new myocardial infarction, angina, or acute arrhythmia in the preceding 18 months. 35

Participants: We conducted 28 semi-structured interviews exploring the psychological symptoms, 36

experiences and adaptation following a cardiac event amongst South Asian (Indian and Bangladeshi) 37

in comparison to white British people. Data was analysed using a thematic ‘framework’ approach. 38

Results: Findings showed heterogeneity in experiences of the cardiac event and its subsequent 39

psychological and physical impact. Adaptation to the event related pre-dominantly to life 40

circumstances, personal attitudes and employment status. Anxiety and low mood were common 41

sequelae, especially in the Bangladeshi group. Indian men tended to normalise symptoms and the 42

cardiac event, and reported less negative mood symptoms than other groups. Fear of physical 43

exertion, particularly heavy lifting, persisted across the groups. Some people across all ethnic groups 44

indicated the need for more psychological therapy post-event. Socio-economic circumstances, age 45

and prior work status appeared more important in relation to adaptation after a cardiac event than 46

ethnic status. 47

Conclusions: Heterogeneity in views and experiences related to the socio economic background, age 48

and work status of the participants with some cultural influences. Rehabilitation programmes 49

should be flexibly tailored for individuals in particular, where relevant, specific support should be 50

provided for returning to work. 51

ARTICLE SUMMARY 52

Strengths and Limitations of this study 53

• We sampled to ensure a broad range of views and experiences from patients with a wide 54

range of ages, employment situation and from a variety of socio economic backgrounds and 55

education. 56

• We used trained interviewers who spoke Sylheti to enable participants to talk at length in 57

their own language. 58

• The main researcher could understand Bengali and the related dialect Sylheti, and could 59

verify the accuracy of the interpreter’s work, and prompt probing of responses. 60

• A diverse range of views were reported, including both positive and negative examples of 61

adaptation. 62

• The South Asian community is culturally heterogeneous; therefore caution is needed with 63

data interpretation on cultural issues. 64

65

66

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Keywords: 68

Rehabilitation medicine 69

Qualitative research 70

Depression and mood disorders 71

Primary care 72

Coronary heart disease 73

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INTRODUCTION 78

South Asians (people from India, Pakistan, and Bangladesh) have higher prevalence and incidence of 79

coronary heart disease (CHD)1. In comparison with white British groups, South Asians exhibit both a 80

biological profile of increased cardiovascular risk2 and an adverse psychosocial profile of increased 81

cardiovascular risk3 4

. A diagnosis of CHD can have psychological, physical and social consequences5 82

which may require considerable adjustment from the individual in various life domains. 83

Adaptation is most commonly defined as absence of psychological distress and involves the related 84

components of preserving functional status, quality of life, and absence of psychological symptoms 85

as well as retaining a purpose in life and positive outlook6. Some people who face the stress of a 86

serious illness adjust well, whereas others may show significant psychological distress7. 87

Psychological distress including anxiety and depression can result in impaired social functioning and 88

quality of life, impeding both psychological and physical recovery. Depression is relatively common 89

in patients with heart disease and associated with an increased risk of mortality and morbidity8 9

. 90

Studies show there is considerable heterogeneity in adaptation following heart disease10 11

and to 91

date, there are few studies exploring the influence of ethnicity on adaptation and psychological well-92

being. A cross-sectional population study exploring psychosocial risk factors and ethnicity concluded 93

UK South Asian men and women report significantly higher psychosocial adversity compared with 94

the white UK population12

. A review article13

emphasised the lack of concordance between incidence 95

of actual CHD and prognosis in South Asians. There is some research to support adverse prognosis in 96

the immediate aftermath of a heart attack14 15

in comparison to Caucasian patients, however a 97

recent retrospective database analysis study16

examining outcomes after cardiac angiography 98

concluded that outcomes for South Asians were no worse than that of Caucasians. 99

A quantitative study from Australia suggested that there are higher levels of psychiatric symptom 100

presentation in South Asian groups with the suggestion that depression may be under-detected and 101

this may be contributing to adverse outcomes in these groups17

. In a qualitative study interviewing 102

Yoruba, Bangladeshi and White British people it was suggested that cultural models of depression 103

are diverse and differ between ethnic groups18

. 104

In relation to the use of services, women, older people and ethnic minorities may be less likely to 105

attend a rehabilitation programme and if they do so, less likely to complete it19

. 106

Whilst there are several quantitative studies measuring the influence of ethnicity on outcomes after 107

heart disease, there are few qualitative studies exploring why this may occur. There is little research 108

exploring adaptations across multiple life domains after heart disease between different ethnic 109

groups. We explored illness perceptions, beliefs, health behaviours, psychological symptoms, 110

experiences and adaptations after heart disease amongst South Asian Indian and Bangladeshi groups 111

and white British people with the aim of identifying inter-ethnic differences in the psychological 112

impact and adaptations made after an acute cardiac event. 113

Subjects and Methods 114

Design: Qualitative semi-structured interviews 115

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Setting: 19 General Practices were purposively selected from six inner and outer boroughs in 116

Central, North and East London to reflect the ethnic diversity found in these areas and represent 117

white British, Indian and Bangladeshi populations. 118

Study population and sample: 119

Purposive sampling was used to select people according to ethnic group from those who had an 120

acute admission and undergone a cardiac intervention for an acute coronary syndrome or 121

ventricular arrhythmia (angioplasty or stent or device insertion) or thrombolysis for an acute 122

myocardial infarction or investigated and treated for angina within the previous eighteen months. 123

We excluded those who were too unwell to complete an interview. We focussed on three groups in 124

total; two South Asian groups (Indian and Bangladeshi) and white British. The following 125

characteristics were monitored to ensure maximum diversity of the sample; age (working and non-126

working population aged 40 years and over), gender and socio-economic class. Sampling continued 127

aiming for saturation on main themes (no new themes emerging). 128

Data collection: 129

Potential participants were identified from 19 participating GP practices by the practice staff and 130

sent a letter from their practice signed by their GP asking if they would be willing to consider taking 131

part in an interview. Non responders were sent one further reminder letter. 132

A topic guide for the interviews was developed by the research team based on findings from 133

relevant literature. The topic guide was piloted with two South Asian participants who were not 134

included in the study and amended accordingly. Following consent, semi-structured interviews of 135

selected patients were conducted by MB. Non-English speaking patients were interviewed by 136

interpreters trained in conducting qualitative interviews recruited from a specialist company. These 137

interviews were then transcribed into English. The main researcher (MB) speaks Bengali and can 138

understand the related dialect of Sylheti, used by some Bangladeshis. She was present at all the 139

interviews and could follow the dialogue. This acted as a quality check to ensure comparability 140

across all the interviews. Interviews broadly explored how participants conceptualised, understood 141

and expressed the nature of their symptoms during and after the initial cardiac event and their 142

adaptations both emotionally, physically and functionally i.e return to work, lifestyle changes, and 143

new concerns. We explored this in the context of cultural and personal factors contributing to any 144

psychological distress experienced and any professional services or alternative and informal help-145

seeking strategies or internal resources used by participants. The interviews were held at a time and 146

place convenient to the patient, and lasted approximately 35-45 minutes. Interviews were audio 147

tape-recorded, transcribed and field notes completed. Participants were offered a £20.00 voucher 148

for their participation. 149

Data Analysis: 150

Analysis was undertaken using the ‘framework’ approach20

identifying key themes and their 151

meanings. Verbatim transcripts (including those interviews which were interpreted and then 152

transcribed in English) were reviewed independently by members of the research team. The team 153

contained some ethnic diversity and were multidisciplinary. A thematic framework was developed 154

identifying key issues, concepts and themes. The framework was independently applied by the 155

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researchers to the transcripts and refined by consensus. The data was charted using Excel to build a 156

picture of the whole data set. This allowed for both a ‘within case’ (rows) and ‘across case’ 157

(columns) analysis. Participants own language was used when condensing comments and 158

referencing extracts back to the original transcripts. In the final interpretation stage, the entire data 159

set was mapped and interpreted by the study team as a whole. Interpretation and analysis at all 160

times remained grounded in the data collected. 161

RESULTS 162

Participant characteristics 163

A total of 201 people were found to be potentially eligible and 29 responded of whom 28 were 164

interviewed. 165

Sample characteristics consisted of 28 participants; 10 white British, 10 Indians and 8 Bangladeshis 166

aged 44 years- 88 years (mean age 66.6 years; SD 12.2) and predominantly male; 23 male compared 167

to 5 females (two of whom were Bangladeshi, three were white British). Thirteen out of the 28 were 168

retired; the remainder described a variety of occupations, for example taxi drivers, managers, small 169

business owners, and homemakers. Twenty out of 28 lived in private housing. All 8 Bangladeshi 170

participants resided in council owned housing and were all recruited from a socio-economically 171

deprived area in East London. Twenty three participants out of 28 were married, one was a divorcee 172

and 4 were single. 173

Experiences of the acute event and how it presented varied considerably in terms of symptoms and 174

severity as well as perception of the event. Little relationship was found between the reported 175

disease severity and the psychological and physical sequelae .There were no ethnic differences in 176

terms of reported severity of symptoms. 177

Exploring how patients adapted to the event involved exploring several themes in relation to 178

adaptation. 179

The results are grouped into five themes that consider reports of adaptation across (1) the 180

psychological and (2) physical domains, (3) attitudes to the future, (4) support for adaptation, and (5) 181

described adaptions. 182

1. Psychological impact of CHD 183

Emotional sequelae – low mood, anxiety, and fear 184

There was heterogeneity of views across participants including initial shock at diagnosis, followed by 185

reported low mood, anxiety, and resentment at feeling limited in physical capabilities in the 186

aftermath. Immediate feelings after discharge included continued shock and anger and feelings of 187

‘life being unfair’ and feeling like an ‘invalid’. Concerns were also expressed about mortality after 188

what was perceived to be a life defining moment and reports of feeling emotionally labile. 189

Shock. Inconvenient. Most I thought was ... this is, I don’t need this! You know, this is just really 190

inconvenient. And also I’d been careful with my diet. I don’t smoke. I don’t drink. I’ve been 191

taking lots of herbal. I thought this just isn’t fair. I haven’t, what have I done? I’m gone, that’s it. 192

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I was extremely, tearful, well people are tearful after a heart attack. (Male1, white British, aged 193

50s) 194

People also reported experiencing conflicting emotions. 195

on the way home in the car I was just I think very upset but glad to be alive at the same time, if 196

that makes sense. ...and I said, ‘Oh yeah, I just can’t believe this has happened,’ and everything 197

else. (Male2, white British, aged 50s) 198

Seven out of the eight Bangladeshi participants’ accounts expressed psychological symptoms such 199

as feelings of being unable to cope or sleep due to worry and fear of a future cardiac event, having ‘a 200

weak heart’, and not being mentally strong. 201

..he was so tense that you know he’s still in the night he can’t sleep, you know, in the middle of the 202

night he wake up and then sit and thinking about that any time he could have the heart attack 203

again, it will come back again. (Male3, Bangladeshi, aged 50s, via translator) 204

Age was an important factor in variation in expressed negative emotional sequelae. Fewer negative 205

psychological sequelae were reported by the people who were retired and this was true for all the 206

ethnic groups. This may be due to different perspectives of the future. 207

if I did go that way it’s a wonderful way to go, because you’re not suffering. (Female4, white 208

British, aged 80s) 209

210

Changing role- perception of self and how others perceive them 211

There was a self-perception amongst some participants that they were weaker, both mentally and 212

physically. This resulted in them adapting by avoiding conflict to reduce stress levels. 213

If anybody wants to hit me for nothing, or to push me, I would say, ‘I’m right,’ but I would say, ‘I 214

am sorry.’ Because mentally I thought I am not strong enough, I’ve got a weak heart. (Male5, 215

Bangladeshi, aged 40s) 216

Work was reported to be an important area relating to self-esteem in all three groups regardless of 217

ethnicity or occupation. A particular difficulty was the challenge to the role of ‘provider’ for the 218

family. 219

I don’t want to be here as an invalid. I would rather be gone. And I mean that from the heart. For 220

my family, they can’t understand that. I want to be psychologically, mentally, emotionally – I want 221

to be the husband. I want to be the dad. I want to be the carer. The one who takes care of 222

everyone else...I don’t want to be a lesser person. (Male, white British, 50s) 223

Some participants expressed frustration at being ‘fussed over’ or ‘treated as an invalid’. 224

Then we got home and it was just, people were making a fuss of me which is nice but it gets a bit 225

irritating because you’re not, you know, you’re not an invalid basically… people would make me 226

cups of tea when they never made me cups of tea before and I kept assuring them that I was 227

alright. (Male2, white British, 50s) 228

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To preserve their identity and role after the illness, some participants were particularly keen not to 229

disclose their illness to work colleagues. 230

To be honest I kind of made very little of it at work. I simply said, at each point of activity, ‘I’m 231

going to be away for whatever. I need this, this and this done.’ And I think because of my prior 232

cosmetic surgery the assumption was, oh he’s off for another face lift. And I just let people believe 233

whatever they wanted to believe. (Male6, white British, 50s) 234

In the retired group, self-esteem appeared to be more related to the physical limitations they had in 235

activities of daily living. 236

Seven out of 10 Indian men gave an account which appeared to normalise their situation after their 237

cardiac event with reduced reporting of negative emotions. 238

I haven’t got no problems. I’m as normal. I’ve never had any problem with anything before it was 239

implanted, and after that, a completely normal life. I feel that nothing happened to me. (Male8, 240

Indian, 60s) 241

2. Perceived physical impact of CHD 242

Somatic symptoms across all three ethnic groups were common, in particular fatigue after the event 243

both in the short and long term. There was reduced exercise tolerance for some with respect to 244

walking or gardening, a reduced ability to undertake domestic tasks. Some reported curtailing 245

hobbies that involved physical exertion for fear of provoking a further cardiac event. This was 246

particularly the case in the white British and Indian groups. The need for these changes had an 247

impact on people’s self-confidence. 248

I realised how tired I was and I didn’t want to do anything else and I let people arrange things and 249

do things, whereas I’ve never been like that, I’ve always, oh I can do it, you know. But I just let 250

them all get on with it and I just felt very, very tired. (Female4, white British, 80s) 251

Many who were healthy before, started to see themselves in a sick role in the long term, not just in 252

the immediate aftermath of the acute cardiac event. There was a fear of heavy lifting across all 253

three groups, irrespective of ethnicity and socio-economic class, in both the post discharge period 254

and in the year following. Participants and their families reportedly perceived the participant to be 255

being physically weaker after the cardiac event. Participants made practical adaptations (reducing 256

housework, changing job roles) to their activities in daily life in order to adapt to their perceived or 257

actual physical limitations. 258

‘’When it comes to lifting stuff then I’m not allowed to do that. ...I had got a little out of breath 259

cutting the lawn and doing some vacuuming in the house, so I just have to take it easy. I rush 260

around doing stuff. Maybe I just have to take it a little more leisurely’’. (Male9, white British, 80s) 261

This fear of heavy lifting is particularly relevant for the Bangladeshi group who had a higher number 262

of younger males with young dependent families, in manual jobs. There was little opportunity for 263

alternative roles, impacting on their identity as the main breadwinner for their family. 264

Mentally I think I’ve had a heart attack. My doctor said I’ve got a weak heart, ‘Don’t do this, don’t 265

do that.…..Obviously as a man, obviously if you have family, obviously the first thing you think 266

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about is money. …. So that’s why I’m worried. So money worries financial worries sometimes. If 267

you are very badly problem in financial then it makes you upset and you can put yourself in 268

depression… I don’t want to be dependent. I don’t want for someone to support me. I feel 269

humiliated… Like I’m just sitting down, sleeping, working, smoking, eating, and she’s earning 270

money and she’s buying food for me. I don’t want to do that.(Male5, Bangladeshi, 40s) 271

3) Attitudes to future 272

Across the participants, amongst the working and non-working population in the Indian and white 273

British group, there was a heterogeneity in personal attitudes to the event and how they adapted 274

with many reporting feeling lucky to be alive and optimistic. 275

If you, you know, you could sit around and grumble but you’re only grumbling at yourself aren’t 276

you?... Don’t think, don’t dwell on your heart attack, get on with, your life I mean…(Female4, 277

white British, 80s) 278

A positive attitude to the future was reported less by Bangladeshi participants, the majority of whom 279

were working age and from a more socioeconomically deprived background. Many in this group 280

expressed financial concerns related to limitations in future employment options, which appeared to 281

negatively impact on their overall views about the future. Only one working participant in the 282

Bangladeshi group expressed optimism that had a non-manual job and had attended higher 283

education. 284

A number of participants across the three groups expressed a strongly fatalistic attitude to the 285

future, irrespective of age, gender, working status, religion or socioeconomic group. 286

So always believe what happens by the Allah, praying, all these things, they are doing their best 287

but everything in his hands, what I believe...Why should worry? If I need to go again. Worry 288

make you worst don’t it? If you worry about something, I don’t take in the worry. But now what 289

will happen will happen, no one can stop it. Why should I worry? (Male10, Bangladeshi, 70s) 290

Faith was expressed as being important in adaptation in many participants, primarily among the 291

Bangladeshi group. 292

But I suppose it all depends how much faith you have on the Almighty. Since I strongly believe in 293

the Lord, I have a strength within me to come over it, so people who, they have weak faith they’re 294

more worried, I suppose they are more worried than me. ...If you have strong faith that gives you 295

strength in order to endure the situation and overcome it and adjust to it. (Male12, Bangladeshi, 296

60s) 297

4) Social and Professional support for adaptation 298

299

a) Family/friends 300

Most participants described excellent support from friends, family and work colleagues. Participants 301

reported this led to increased morale, as well as provided help with physical and domestic tasks. 302

My son lives not far from my house. I see him every day. We’re a close family. I’ve got brothers, 303

sisters-in-law, nephews. We are very close. Just a phone call and they’ll all be there. So that way 304

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I’m really happy. Lucky anyway…. When you can count on somebody, even in the back of your 305

mind, you relax. At least you know somebody cares and they are there when you need them. That 306

makes all the difference to me. (Male13, Indian, 60s) 307

The difference a supportive, meaningful social network made for psychological adaptation after 308

illness was illustrated by two female Bangladeshi participants, both widowed, living within an 309

extended family in the same socially deprived area. One participant reported moderate low mood 310

and the other reported no problems with mood. 311

With the first participant it appeared she felt help was given grudgingly by family members and she 312

felt very much alone despite living in a large household. 313

She want liaison office...She’s saying she can tell her house problem, if anyone abuse her, you 314

know, tell her off and this that, to ask her to do that sort of thing. She’s saying, no they’re not 315

doing it at the moment, she says, how long they keep doing, you know, looking after her, giving 316

her food. She says one day they will get angry and might say something to her so she need to tell 317

someone that sort of thing. That’s why she need someone to talk to, someone like she can easily 318

access. (Female15, Bangladeshi, aged 60s, moderate low mood, via translator) 319

The second participant described an extremely supportive network. 320

’Her family are taking care of her so she can, you know. ..She doesn’t have to think about anything 321

in the house, you know, financially, whatever, cleaning, cooking, doesn’t have to worry about 322

anything. …..They arrange everything… (Female14, Bangladeshi, aged 60s, no low mood reported, 323

via translator). 324

b) Professional service support 325

i) NHS services: GP/Hospital 326

In all three ethnic groups, very few saw GP services as a valuable source of psychological or practical 327

support after discharge. Two participants in the Bangladeshi group reported rude, discriminatory or 328

uncaring staff in particular hospitals. Some Bangladeshi individuals highlighted concerns that family 329

were being used as interpreters, or reported ineffective interpreters who were formally employed 330

by the NHS. 331

The white British and Indian groups, working in managerial or professional roles were the 332

predominant groups who reported using the internet, reading the leaflets provided or asking for 333

advice from friends and family who were in the medical profession. Few Bangladeshis were able to 334

read the leaflets or access the internet for more information. 335

I have a friend who was a cardiology nurse, so I had a chat with her. Also I looked it up on the 336

internet. And I also spent some time reading the angiogram notes to see what condition I was 337

really in. (Male1, white British, 50s) 338

ii) Cardiac rehabilitation programme 339

Just under half of participants attended a cardiac rehabilitation programme, and the remainder 340

reported actively declining or that they were not offered or were unaware of a cardiac rehabilitation 341

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programme. More participants from the white British group reported attending the programme and 342

more in the Bangladeshi and Indian groups stated they were unaware of the programme. 343

Of those that attended the cardiac rehabilitation programme, all but two participants found it a 344

positive experience, offering useful, in depth information on their condition. They reported it 345

increased their confidence and that meeting peers and group therapy benefited them 346

psychologically. 347

I see the difference in myself when I came out of the class. It was very useful.... and to hearing the 348

others... But the class actually helped me to understand more, and listening to other people’s 349

stories. ...Actually the education at that class actually is the main thing really helpful in every way, 350

for the medication, or the exercise and the relaxation. That gave me more confidence and to 351

relieve some of my fear. GPs don’t have the time and everything. So this is actually three hours or 352

two hours, 10 till 1, three hours. Really relaxed and get more information... (Male9, Indian, 50s) 353

Two of the elderly retired participants, one female Bangladeshi and one male white British 354

participant, went on to have further heart attacks following exercise rehabilitation and they 355

attributed it to ‘overdoing it’ as a result of these sessions. 356

She says there’s a place in XXX, I don’t know, leisure centre or, she went there for two weeks and 357

after that she had a heart attack, again. After the first episode she had a second one again, so 358

that’s why she didn’t go. (Female15, Bangladeshi, 60s via translator) 359

These participants also expressed a fear of heavy lifting. 360

Of the eight participants who stated they were unaware of a rehabilitation programme, seven were 361

from the more socioeconomically deprived Bangladeshi group. It is not known if they were not 362

offered the service, there was not an appropriate service for their condition or there was an issue 363

with the language in which the service was provided. 364

5. Practical adaptations made after the event. 365

i) Return to work 366

Returning to employment was seen to present particular challenges. In the Indian and White British 367

groups, especially amongst those in professional or managerial posts, the cardiac event prompted 368

change in the nature of employment e.g. more part time work, or giving up a previous work role. 369

They generally reported feeling supported in their work environment and were able to return to 370

work in an adapted role. 371

Quite a lot of the work I was doing part-time means humping heavy stuff around, and I think a 372

combination of being told maybe you’re not as fit as you should be, and you can’t lift anything, 373

and also my back pain, so I’ve not gone back to doing that job. I’ve been given another job which 374

is less strenuous, but even that, I don’t work that often. It’s very part-time, if you like. Mostly 375

administrative. (Male18, white British, 60s) 376

There was flexibility in their roles and opportunity for social support from team members. 377

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…And they was kind. They were saying, go home a bit early, don’t overdo it, you know edge back 378

into work and everything else. So it worked out very, very well ...Colleagues at work were 379

supportive (Male2, white British, 50s) 380

This is in contrast to the more manual and solitary (e.g. mini-cab driver) posts of the Bangladeshi 381

workers. Only one of the five Bangladeshi participants who were working prior to the event was 382

able to return to their original work role by twelve months post-event. The Bangladeshi group were 383

predominantly from a younger age group with dependent families (only one retired participant). As 384

discussed earlier, this group expressed more negative emotions and fear of the future as their 385

perceived health status was seen as a barrier to returning to work. There were also fewer 386

opportunities for alternative working or workplace adaptations to take into account their new 387

circumstances. 388

Some of the Bangladeshi participants related their negative emotions to the fact they were at home 389

all day with no purposeful employment. These participants were more likely to express feeling both 390

physically and mentally weak. 391

Because every hours, every day, about five/six hours you’re working you different life, you know, 392

different thing, you’re working. Always you sit in home, that’s …... doesn’t help you feel 393

particularly good? No, No. (Male19, Bangladeshi, 50s, long term unemployed) 394

ii) Lifestyle changes 395

All three groups independent of age, sex and socio economic background focussed on the 396

importance of making active lifestyle changes and reported adopting dietary changes, with the 397

Bangladeshi group particularly reducing red meat consumption. In some, concern about triggering a 398

future heart attack prevented exercise to the same level as previously. 399

I did become very much careful about the red meat, avoiding the fatty food and all that...I walk a 400

little bit, I go for walk, although I can’t walk much...being careful what I eat, you know…since then 401

I have taken some effort myself of taking some medicines. (Male16, Bangladeshi, 61 years) 402

Participants from all three ethnic groups, and all socioeconomic backgrounds, reported that they 403

would like access to psychological support (group therapy or individual one-to-one therapy) to aid 404

adjustment and improve mental health following their cardiac event. 405

.If there are any people that you can consult or talk to, I’m a) not aware of anybody, and b) I think 406

they have to be kind of informally accessible. I think it’s a barrier if you have a lot of form filling 407

and red tape and stuff to go through. If you’re able to say, ‘Look, can I come and have a chat… It 408

would be enormously helpful if there was a local group, a local person that understood the 409

conditions and the treatments. (Male6, white British, 50s) 410

DISCUSSION 411

Across the three groups, participants showed heterogeneity in reported experiences of the cardiac 412

event and its subsequent psychological and physical impact. Adaptation to the event, both 413

psychologically and physically, did not appear to relate to the severity of the initial event, but varied 414

by socioeconomic status, age and ethnicity. 415

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Low mood, anxiety, fatigue and fear of heavy lifting following the cardiac event were common 416

themes to all. There were differences in the psychological adaptation experienced after the cardiac 417

event between the ethnic groups, which was partly explained by differences in socio-economic 418

status and occupations prior to the cardiac event. 419

Participants in the Bangladeshi group tended to experience more mental health issues alongside 420

physical symptoms, especially fatigue. This was strongly associated with difficulties with returning to 421

employment and associated financial concerns with resultant negative impact on self-esteem. Some 422

members of this group were fatalistic in particular making reference to their faith, saying for 423

example, ‘Allah will look after me’. This belief appeared to help acceptance and adaption to their 424

new circumstances after the cardiac event. In the male Indian group, most reported less low mood 425

and fewer physical health symptoms in comparison to the white British and Bangladeshi groups, 426

with a tendency to normalise the event in their accounts. 427

Comparison with existing literature 428

There is little qualitative literature exploring the experiences and impact of heart disease for UK 429

South Asian populations. Research has shown that job uncertainty is linked to deterioration in 430

health status21

. This is likely to be a factor in the negative adaptation following a cardiac event we 431

found in men in the Bangladeshi group. 432

Older Indian males in our study appeared to show more positive adaptation, and normalise the 433

experience. Evidence from previous studies show they have worse outcomes in terms of secondary 434

cardiac events after angina management than white British22

. It is possible that there is more 435

positive adaptation psychologically but there is an increased genetic risk2 4

or that the normalisation 436

means they make fewer efforts to change unhealthy lifestyle behaviours. The latter is supported by 437

a qualitative study based in Leicester which examined the experiences and needs of one ethnic 438

group - Hindu Gujarati patients and partners post MI which highlighted a lack of lifestyle changes23

. 439

Similar findings of non-adherence to diet or other lifestyle changes by UK South Asians were seen in 440

two other qualitative studies24 25

which examined South Asian attitudes to lifestyle coronary risk 441

factors and reported that lifestyle changes were not made or not adhered to. 442

In our study, fatigue, as a multidimensional concept involving tiredness, weakness and lack of energy 443

was a common theme. This may be a somatic expression of the negative psychological effect of the 444

event, or physical sequelae related to reduced heart functioning (heart failure) due to the event. 445

There is evidence to support this as a widespread issue in patients with long term illnesses including 446

coronary heart disease26

. Our study found that the fear of heavy lifting, which persisted, limited full 447

physical rehabilitation long term. This does not appear to be raised in similar qualitative studies27

. 448

Fear of lifting may be due to conflicting or ambiguous medical advice28

. 449

The need for individually tailored rehabilitation is supported by other studies24 25

which highlighted a 450

need for a tailored individual programme for South Asians which avoids stereotyping, but recognises 451

cultural barriers to change. However, the former study also cautioned that not every difficulty can 452

be attributed solely to the person’s ethnic background, and similarly we found that apparent initial 453

ethnic differences in psychological adaptation in our Bangladeshi group were explained to a large 454

extent by much greater problems returning to work related to the types of employment and 455

younger age of this group. Our study is in keeping with others 29 23

, finding that socioeconomic 456

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status, age and gender are as important as ethnicity when examining barriers, psychological or 457

physical to adapting to cardiac disease. Indeed it has been argued that for long lasting change 458

cardiac prevention initiatives need to incorporate cultural sensitivity whilst also taking into account 459

the socio economic circumstances of ‘at risk ‘ communities30 31

. This appears especially pertinent to 460

our Bangladeshi group. 461

Strengths and limitations of the study 462

We purposively sampled a range of participants from white British, Indian and Bangladeshi 463

participants and explored experiences and attitudes of the psychological impact and adaptation 464

after a cardiac event. We sampled to ensure a broad range of views and experiences from patients 465

with a wide range of ages, working and retired and from a variety of socio economic backgrounds 466

and education. 467

A strength of our study was that although we used trained interviewers who spoke Sylheti to make it 468

easier for the participants to talk at length in their own language, the main researcher could also 469

understand Bengali and the related dialect Sylheti. The researcher understood the interpreter 470

interviewing the participants in Sylheti, allowing her to monitor the discussion during the interview, 471

helping to ensure effective probes and follow ups were used and also to verify the accuracy of the 472

interpreter’s work. 473

There is potential for sampling bias as the more motivated and pro-active, less depressed 474

participants may have agreed to take part. There was a lack of females in the sample, although we 475

did interview two female Bangladeshi participants (a group known to be hard to recruit). There were 476

however no Indian women in the sample, as none were identified who agreed to participate. 477

The South Asian community is culturally heterogeneous; therefore caution is needed with data 478

interpretation on cultural issues. The findings do however offer important insights for cardiac 479

rehabilitation across ethnic groups. 480

Implications for clinical practice and research 481

In this study there was evidence of greater negative adaptation to a cardiac event in the Bangladeshi 482

group with younger men especially perceiving difficulties returning to employment following the 483

event. This was not seen to be adequately addressed in their rehabilitation, and more tailored help 484

and support in relation to returning to work should be considered. Participants from all ethnic 485

groups reported concerns about fatigue and expressed anxiety regarding heavy lifting and physical 486

exertion longer term. These issues should be more explicitly explored and addressed in longer term 487

follow-up in primary care settings. 488

CONCLUSIONS 489

Overall, successful adjustment after an acute cardiac event in our sample was related to socio 490

economic background, age and individual personalities, with some cultural influences. Current 491

rehabilitation services and follow up in primary care should consider the differing psychological and 492

physical changes and adaptations that may be needed longer term, especially with regard to physical 493

activity, heavy lifting and fatigue levels. Bangladeshi participants in particular experienced less 494

adaptation related to difficulties in returning to employment and associated financial hardship. 495

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There is a need for extra support (psychological, practical and financial) with a specific focus on 496

working age people with families returning to manual work. 497

Funding 498

This study is funded by the National Institute for Health Research (NIHR) School for Primary Care 499

Research (SPCR), UK. 500

http://www.nihr.ac.uk/funding/school-for-primary-care-research.htm 501

Competing interests: none 502

The authors report no conflicts of interest. This article presents independent research funded by the 503

National Institute for Health Research (NIHR), UK. The views expressed are those of the author(s) 504

and not necessarily those of the NHS, the NIHR or the Department of Health. The funder has had no 505

role in the study design; in the collection, analysis, and interpretation of data; in the writing of the 506

manuscript or decision to submit for publication. 507

Author Contributions 508

MB and KW planned the overall study. KW and FS advised on study design. MB, FS and KW 509

participated in meetings and advised on study documents. MB carried out data collection for the 510

study. MB, FS and KW participated in data analysis. MB wrote the manuscript with significant and 511

equal editorial input from both FS and KW. MB, FS and KW all read and approved the final version of 512

the manuscript. 513

Patient consent: Obtained 514

Ethics approval: Obtained from the East of England (Hertfordshire) Research Ethics Committee: REC 515

reference number 10/H0311/41 516

Provenance and peer review: Not commissioned; externally peer reviewed 517

Data sharing statement: No additional data are available 518

519

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Consent

Study title: An exploration of the psychological impact and adaptation post-cardiac event in South Asians in

the United Kingdom

UCL RESEARCH DEPARTMENT OF PRIMARY CARE &

POPULATION HEALTH

ROYAL FREE CAMPUS, ROWLAND HILL STREET LONDON NW3 2PF

Study Number: Patient Identification Number

CONSENT FORM Name of Researchers: Dr Mimi Bhattacharyya, Dr Fiona Stevenson, Dr Kate Walters

Any questions to Dr.M Bhattacharyya, Research Department of Primary Care and Population Health,

University College London, Telephone 020 7794 0500 ext 33997. Email [email protected]

With regard to Patient Information Sheet V2:

An exploration of the psychological impact and adaptation post-cardiac

event in South Asians in the United Kingdom Please initial box

1. I confirm that I have read and understood the information sheet for the above study

and have had the opportunity to consider the information, ask questions and have had

these answered satisfactorily.

2. I understand that my participation is voluntary and that I am free to withdraw at any

time, without giving any reason, without my medical care or legal rights being affected.

3. I understand that relevant sections of my medical notes may be looked at by

regulatory authorities and sections of data collected during the study may be looked

at by individuals from the department of Primary Care at UCL or from the NHS trust,

where it is relevant to my taking part in research. I give permission for these

individuals to have access to my records. I also give permission for my GP to be

informed of my participation in the study.

4 I agree to participate in a recorded in-depth interview on my experiences of coronary

heart disease. This interview will last up to one hour.

5 I agree to anonymised quotes from my interview with the researcher being used in a

form which will not be identifiable as being from me. (We will notify you if the

research is published and send you a copy of the manuscript if you request this).

6 I agree to take part in the above study.

Name of Patient................................................. Date Signature.................................................

Name of Researcher........................................ Date Signature...............................................

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Research Checklist

Author information: Have you provided details of all of your co-authors? YES

Is the information that you have entered into ScholarOne the same as the information on the

manuscript title page? YES

Manuscript length and formatting: Have you checked that your manuscript doesn’t exceed the

requirements for word count, number of tables and/or figures, and number of references? Yes

Have you provided your abstract in the correct format? Have you supplied any required additional

information for your article type, such as key messages? YES

Tables: Have you embedded any tables into the main text? Have they been cited in the text? Have

you provided appropriate table legends? Have you uploaded any lengthy tables as supplementary

files for online publication? NO TABLES

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acceptable format and are they of sufficient quality? Are they suitable for black and white

reproduction (unless you intend to pay any required fees for colour printing)? Have the files been

labelled appropriately? Have the figures been cited in the text? Have you provided appropriate

figure legends? NO FIGS

References: Have all of the references been cited in the text? YES

Supplementary files and appendices: Have you supplied these in an acceptable format? Have they

been cited in the main text? YES

Statements: Have you included the necessary statements relating to contributorship, competing

interests, data sharing and ethical approval? YES

Research reporting checklists: Have you either provided the appropriate statement for your study

type, or explained why a checklist isn’t required? YES

Permissions: Have you obtained from the copyright holder to re-use any previously published

material? Has the source been acknowledged? N/A

Reviewers: Have you provided the names of any preferred and non-preferred reviewers? YES (TWO)

Revised manuscripts: Have you supplied both a marked copy and a clean copy of your manuscript?

Have you provided a point by point response to the reviewer and editor comments? N/A

Information required for all authors submitting a manuscript to any BMJ journal:

Manuscript files in the appropriate format, including a cover letter and title page YES

Details of any co-authors (name, institution, city, country and email address) YES

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Details of preferred reviewers (name and email address) YES

Word count, number of figures, number of tables, number of references and number of

supplementary files for online only publication YES

Competing interest statement YES

Contributorship statement YES

Additional information that can be provided or may be required when submitting certain article

types to certain journals:

Name of the research funder(s) YES

Names of any collaborators N/A

Details of non-preferred reviewers (name and email address) N/A

Clinical trial registration number N/A

Patient consent form YES

Details of ethical approval YES

Research reporting checklist (or a reason why one has not been provided) YES

Data sharing statement YES

Permission from the copyright holder to re-use previously published material N/A

Title of an alternate BMJ journal to which your manuscript can be automatically submitted if

rejected from your first choice journal NO

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An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the United Kingdom: a

qualitative study.

Journal: BMJ Open

Manuscript ID bmjopen-2015-010195.R1

Article Type: Research

Date Submitted by the Author: 13-May-2016

Complete List of Authors: Bhattacharyya, Mimi; UCL, Primary Care and Population health Stevenson, Fiona; UCL, Primary care and population sciences Walters, Kate; University College London, Primary Care and Population

Health

<b>Primary Subject Heading</b>:

General practice / Family practice

Secondary Subject Heading: Rehabilitation medicine, Cardiovascular medicine, Mental health

Keywords: REHABILITATION MEDICINE, QUALITATIVE RESEARCH, Depression & mood disorders < PSYCHIATRY, PRIMARY CARE, Coronary heart disease < CARDIOLOGY


BMJ Open on N

ovember 19, 2020 by guest. P

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jopen.bmj.com

/B

MJ O

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4

An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the 1

United Kingdom: a qualitative study. 2

Author details and affiliations: 3

Dr Mimi Bhattacharyya1MRCP, PhD 4

Dr Fiona Stevenson1

MA (Hons), PhD 5

Dr Kate Walters1 MRCGP, PhD 6

1 Research Department of Primary Care and Population Health, University College London, Upper 7

Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF 8

9

Corresponding author details: 10

Dr Mimi Bhattacharyya 11

Research Department of Primary Care & Population Health, University College London, Upper Third 12

Floor, Royal Free Hospital, Rowland hill Street, London NW3 2PF 13

Telephone: 020 7794 0500 ext. 33997 14

Fax: 02077941224 15

Email [email protected] 16

17

Word count: 4452(quotes 1609) 18

Abstract word count: 259 19

20

21

22

23

24

25

26

27

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ABSTRACT 30

Objective: There is little research on how different ethnic groups adapt after an acute cardiac event. 31

This qualitative study explores between-ethnicity and within-ethnicity variation in adaptation and 32

psychological impact of an acute cardiac event in UK South Asian and white British people. 33

Setting: We purposively sampled people by ethnic group from general practices in London who had 34

a new myocardial infarction, angina, or acute arrhythmia in the preceding 18 months. 35

Participants: We conducted 28 semi-structured interviews exploring the psychological symptoms, 36

experiences and adaptation following a cardiac event amongst South Asians (Indian and 37

Bangladeshi) in comparison to white British people. Data was analysed using a thematic ‘framework’ 38

approach. 39

Results: Findings showed heterogeneity in experiences of the cardiac event and its subsequent 40

psychological and physical impact. Adaptation to the event related predominantly to life 41

circumstances, personal attitudes and employment status. Anxiety and low mood were common 42

sequelae, especially in the Bangladeshi group. Indian men tended to normalise symptoms and the 43

cardiac event, and reported less negative mood symptoms than other groups. Fear of physical 44

exertion, particularly heavy lifting, persisted across the groups. Some people across all ethnic groups 45

indicated the need for more psychological therapy post-event. Socio-economic circumstances, age 46

and prior work status appeared more important in relation to adaptation after a cardiac event than 47

ethnic status. 48

Conclusions: Heterogeneity in views and experiences related to the socio economic background, age 49

and work status of the participants, with some cultural influences. Rehabilitation programmes 50

should be flexibly tailored for individuals in particular, where relevant, specific support should be 51

provided for returning to work. 52

ARTICLE SUMMARY 53

Strengths and Limitations of this study 54

• We sampled to ensure a broad range of views and experiences from patients with a wide 55

range of ages, employment situation and from a variety of socio economic backgrounds and 56

education. 57

• We used trained interviewers who spoke Sylheti to enable participants to talk at length in 58

their own language. 59

• The main researcher could understand Bengali and the related dialect Sylheti, and could 60

verify the accuracy of the interpreter’s work, and prompt probing of responses. 61

• A diverse range of views were reported, including both positive and negative examples of 62

adaptation. 63

• The South Asian community is culturally heterogeneous; therefore caution is needed with 64

data interpretation on cultural issues. 65

66

67

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68

Keywords: 69

Rehabilitation medicine 70

Qualitative research 71

Depression and mood disorders 72

Primary care 73

Coronary heart disease 74

75

76

77

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INTRODUCTION 79

South Asians (people from India, Pakistan, and Bangladesh) have higher prevalence and incidence of 80

coronary heart disease (CHD)1. In comparison with white British groups, South Asians exhibit both a 81

biological profile of increased cardiovascular risk2 and an adverse psychosocial profile of increased 82

cardiovascular risk.3 4

A diagnosis of CHD can have psychological, physical and social consequences5 83

which may require considerable adjustment from the individual in various life domains. 84

Adaptation is most commonly defined as absence of psychological distress and involves the related 85

components of preserving functional status, quality of life, and absence of psychological symptoms 86

as well as retaining a purpose in life and positive outlook6. Some people who face the stress of a 87

serious illness adjust well, whereas others may show significant psychological distress7. 88

Psychological distress including anxiety and depression can result in impaired social functioning and 89

quality of life, impeding both psychological and physical recovery. Depression is relatively common 90

in patients with heart disease and associated with an increased risk of mortality and morbidity.8 9

91

Studies show there is considerable heterogeneity in adaptation following heart disease10 11

and to 92

date there are few studies exploring the influence of ethnicity on adaptation and psychological well-93

being. A cross-sectional population study exploring psychosocial risk factors and ethnicity concluded 94

UK South Asian men and women report significantly higher psychosocial adversity compared with 95

the white UK population12

. A review article13

emphasised the lack of concordance between 96

incidence of actual CHD and prognosis in South Asians. There is some research to support adverse 97

prognosis in the immediate aftermath of a heart attack14 15

in comparison to Caucasian patients, 98

however a recent retrospective database analysis study16

examining outcomes after cardiac 99

angiography concluded that outcomes for South Asians were no worse than those for Caucasians. 100

A quantitative study from Australia suggested that there are higher levels of psychiatric symptom 101

presentation in South Asian groups with the suggestion that depression may be under-detected and 102

this may be contributing to adverse outcomes in these groups17

. In a qualitative study interviewing 103

Yoruba, Bangladeshi and White British people it was suggested that cultural models of depression 104

are diverse and differ between ethnic groups18

. 105

In relation to the use of services, women, older people and ethnic minorities may be less likely to 106

attend a rehabilitation programme and if they do so, less likely to complete it19

. 107

Whilst there are several quantitative studies measuring the influence of ethnicity on outcomes after 108

heart disease, there are few qualitative studies exploring the reasons why differences may occur. 109

There is little research exploring adaptations across multiple life domains after heart disease 110

between different ethnic groups. We explored illness perceptions, beliefs, health behaviours, 111

psychological symptoms, experiences and adaptations after heart disease amongst South Asian 112

Indian and Bangladeshi groups and white British people with the aim of identifying inter-ethnic 113

differences in the psychological impact and adaptations made after an acute cardiac event. 114

Subjects and Methods 115

Design: Qualitative semi-structured interviews 116

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Setting: 19 General Practices were purposively selected from six inner and outer boroughs in 117

Central, North and East London to reflect the ethnic diversity found in these areas and represent 118

white British, Indian and Bangladeshi populations. 119

Study population and sample: 120

Purposive sampling was used to select people according to ethnic group from those who have had 121

an acute admission and undergone a cardiac intervention for an acute coronary syndrome or 122

ventricular arrhythmia (angioplasty or stent or device insertion) or thrombolysis for an acute 123

myocardial infarction or investigated and treated for angina within the previous eighteen months. 124

We excluded those who were too unwell to complete an interview. We focused on three groups in 125

total; two South Asian groups (Indian and Bangladeshi) and white British. The following 126

characteristics were monitored to ensure maximum diversity of the sample; age (working and non-127

working population aged 40 years and over), gender and socio-economic class. Sampling continued 128

aiming for saturation on main themes (no new themes emerging). 129

Data collection: 130

Potential participants were identified from 19 participating GP practices by the practice staff and 131

sent a letter from their practice signed by their GP asking if they would be willing to consider taking 132

part in an interview. Non responders were sent one further reminder letter. 133

A topic guide for the interviews was developed by the research team based on findings from 134

relevant literature. The topic guide was piloted with two South Asian participants who were not 135

included in the study and amended accordingly. Written informed consent had been obtained from 136

the participants following which semi-structured interviews of selected patients were conducted by 137

MB. Non-English speaking patients were interviewed by interpreters trained in conducting 138

qualitative interviews recruited from a specialist company. These interviews were then transcribed 139

into English. The main researcher (MB) speaks Bengali and can understand the related dialect of 140

Sylheti, used by some Bangladeshis. She was present at all the interviews and could follow the 141

dialogue. This acted as a quality check to ensure comparability across all the interviews. Interviews 142

broadly explored how participants conceptualised, understood and expressed the nature of their 143

symptoms during and after the initial cardiac event and their adaptations emotionally, physically and 144

functionally i.e. return to work, lifestyle changes, and new concerns. We explored this in the context 145

of cultural and personal factors contributing to any psychological distress experienced and any 146

professional services or alternative and informal help-seeking strategies or internal resources used 147

by participants. The interviews were held at a time and place convenient to the patient, and lasted 148

approximately 35-45 minutes. Interviews were audio tape-recorded, transcribed and field notes 149

completed. Participants were offered a £20.00 voucher for their participation. 150

Data Analysis: 151

Analysis was undertaken using the ‘framework’ analysis20

identifying key themes and their meanings. 152

This is a widely used approach, particularly used for healthcare evaluations. Verbatim transcripts 153

(including those interviews which were interpreted and then transcribed in English) were 154

independently reviewed by members of the research team. The team contained some ethnic 155

diversity and was multidisciplinary. A thematic framework was developed identifying key issues, 156

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concepts and themes. The framework was independently applied by the researchers to the 157

transcripts and refined by consensus. The data was charted using Excel to build a picture of the 158

whole data set. The framework approach allowed for both a ‘within case’ (rows) and ‘across case’ 159

(columns) analysis. Participants own language was used when condensing comments and 160

referencing extracts back to the original transcripts. In the final interpretation stage, the entire data 161

set was mapped and interpreted by the study team as a whole. Interpretation and analysis at all 162

times remained grounded in the data collected. Framework analysis was selected as a particular 163

strength of the method is in facilitating examination of the data across and between cases for 164

patterns and connections, allowing for consideration of both inter and intra-ethnic differences in the 165

psychological impact and adaptations made after an acute cardiac event. 166

RESULTS 167

Participant characteristics 168

A total of 201 people were found to be potentially eligible and 29 responded of whom 28 were 169

interviewed. 170

Sample characteristics consisted of 28 participants; 10 white British, 10 Indians and eight 171

Bangladeshis aged 44 years- 88 years (mean age 66.6 years; SD 12.2) and predominantly male; 23 172

males compared to 5 females (two of whom were Bangladeshi, three were white British). Mean age 173

was 72.3 years for the Caucasian group, 68 years for the Indian group and 58 years for the 174

Bangladeshi group. Thirteen out of the 28 were retired (those retired from a professional 175

background included four from the Indian group one from the Caucasian group and none from the 176

Bangladeshi group); the remainder described a variety of occupations, for example taxi drivers, 177

managers, small business owners, and homemakers. Twenty out of 28 lived in private housing. All 8 178

Bangladeshi participants resided in council owned housing and were all recruited from a socio-179

economically deprived area in East London. Twenty three participants out of 28 were married, one 180

was a divorcee and 4 were single. All 10 Indian participants were Hindu and all 8 Bangladeshi 181

participants were Muslim. 182

This is illustrated in Table 1 : Participant demographic characteristics. 183

Table 1 : Summary of participant demographic characteristics 184 185

ID Age Gender Group Occupation (OPCS Housing classification)

1 74 Female Caucasian Retired (skilled non Private flat manual)

2 80 Male Caucasian Retired Private flat 3 85 Male Caucasian Retired (skilled non Private flat

manual) 4 81 Male Caucasian Retired (skilled non Private flat

manual) 5 88 Female Caucasian Retired (professional) Private house 6 55 Male Caucasian Partly skilled Private house 7 59 Male Caucasian Skilled non manual Private flat 8 63 Male Caucasian Professional Private house 9 83 Female Caucasian Unskilled Private house

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10 55 Male Caucasian Skilled non manual Private house 11 76 Male Indian Retired professional Private house 12 55 Male Indian Skilled non manual Private house 13 62 Male Indian Skilled non manual Private house 14 67 Male Indian Retired (skilled non Private house

manual) 15 82 Male Indian Retired (skilled Private house

manual) 16 71 Male Indian Retired (professional) Private house 17 79 Male Indian Retired (skilled non Private house

manual)

18 61 Male Indian Skilled non manual Private house 19 75 Male Indian Retired (professional) Private house 20 52 Male Indian Skilled non manual Private house 21 73 Male Bangladeshi Retired (skilled Council house

manual) 22 50 Male Bangladeshi Unemployed (skilled Council flat

manual) 23 63 Female Bangladeshi Housewife Council house 24 61 Female Bangladeshi Housewife Council house 25 53 Male Bangladeshi Partly skilled, on long Council house

term sick leave 26 57 Male Bangladeshi Partly skilled, on long Council house

term sick leave 27 61 Male Bangladeshi Skilled non manual Council house 28 44 Male Bangladeshi Skilled manual Council flat

186

187

Experiences of the acute event and how it presented varied considerably in terms of symptoms and 188

severity as well as perception of the event. Little relationship was found between the reported 189

disease severity and the psychological and physical sequelae. There were no ethnic differences in 190

terms of reported severity of symptoms. 191

Exploring how patients adapted to the event involved exploring several themes in relation to 192

adaptation. 193

The results are grouped into five themes that consider reports of adaptation across (1) the 194

psychological and (2) physical domains, (3) attitudes to the future, (4) support for adaptation, and (5) 195

described adaptions. 196

1. Psychological impact of CHD 197

Emotional sequelae – low mood, anxiety, and fear 198

There was heterogeneity of views across participants including initial shock at diagnosis, followed by 199

reported low mood, anxiety, and resentment at feeling limited in physical capabilities in the 200

aftermath. Immediate feelings after discharge included continued shock and anger and feelings of 201

‘life being unfair’ and feeling like an ‘invalid’. Concerns were also expressed about mortality after 202

what was perceived to be a life defining moment and reports of feeling emotionally labile. 203

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Shock. Inconvenient. Most I thought was ... this is, I don’t need this! You know, this is just really 204

inconvenient. And also I’d been careful with my diet. I don’t smoke. I don’t drink. I’ve been 205

taking lots of herbal. I thought this just isn’t fair. I haven’t, what have I done? I’m gone, that’s it. 206

I was extremely, tearful, well people are tearful after a heart attack. (Male1, white British, aged 207

50s) 208

People also reported experiencing conflicting emotions. 209

on the way home in the car I was just I think very upset but glad to be alive at the same time, if 210

that makes sense. ...and I said, ‘Oh yeah, I just can’t believe this has happened,’ and everything 211

else. (Male2, white British, aged 50s) 212

Seven out of the eight Bangladeshi participants’ accounts expressed psychological symptoms such as 213

feelings of being unable to cope or sleep due to worry and fear of a future cardiac event, having ‘a 214

weak heart’, and not being mentally strong. 215

..he was so tense that you know he’s still in the night he can’t sleep, you know, in the middle of the 216

night he wake up and then sit and thinking about that any time he could have the heart attack 217

again, it will come back again. (Male3, Bangladeshi, aged 50s, translated) 218

Age was an important factor in variation in expressed negative emotional sequelae. Fewer negative 219

psychological sequelae were reported by the people who were retired and this was true for all the 220

ethnic groups. This may be due to different perspectives of the future. 221

if I did go that way it’s a wonderful way to go, because you’re not suffering. (Female4, white 222

British, aged 80s) 223

224

Changing role- perception of self and how others perceive them 225

There was a self-perception amongst some participants that they were weaker, both mentally and 226

physically. This resulted in them adapting by avoiding conflict to reduce stress levels. 227

If anybody wants to hit me for nothing, or to push me, I would say, ‘I’m right,’ but I would say, ‘I 228

am sorry.’ Because mentally I thought I am not strong enough, I’ve got a weak heart. (Male5, 229

Bangladeshi, aged 40s) 230

Work was reported to be an important area relating to self-esteem in all three groups regardless of 231

ethnicity or occupation. A particular difficulty was the challenge to the role of ‘provider’ for the 232

family. 233

I don’t want to be here as an invalid. I would rather be gone. And I mean that from the heart. For 234

my family, they can’t understand that. I want to be psychologically, mentally, emotionally – I want 235

to be the husband. I want to be the dad. I want to be the carer. The one who takes care of 236

everyone else...I don’t want to be a lesser person. (Male, white British, 50s) 237

Some participants expressed frustration at being ‘fussed over’ or ‘treated as an invalid’. 238

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Then we got home and it was just, people were making a fuss of me which is nice but it gets a bit 239

irritating because you’re not, you know, you’re not an invalid basically… people would make me 240

cups of tea when they never made me cups of tea before and I kept assuring them that I was 241

alright. (Male2, white British, 50s) 242

To preserve their identity and role after the illness, some participants were particularly keen not to 243

disclose their illness to work colleagues. 244

To be honest I kind of made very little of it at work. I simply said, at each point of activity, ‘I’m 245

going to be away for whatever. I need this, this and this done.’ And I think because of my prior 246

cosmetic surgery the assumption was, oh he’s off for another face lift. And I just let people believe 247

whatever they wanted to believe. (Male6, white British, 50s) 248

In the retired group, self-esteem appeared to be more related to the physical limitations they had in 249

activities of daily living. 250

Seven out of 10 Indian men gave an account which appeared to normalise their situation after their 251

cardiac event with reduced reporting of negative emotions. 252

I haven’t got no problems. I’m as normal. I’ve never had any problem with anything before it was 253

implanted, and after that, a completely normal life. I feel that nothing happened to me. (Male8, 254

Indian, 60s) 255

2. Perceived physical impact of CHD 256

Somatic symptoms across all three ethnic groups were common, in particular fatigue after the event 257

both in the short and long term. There was reduced exercise tolerance for some with respect to 258

walking or gardening, a reduced ability to undertake domestic tasks. Some reported curtailing 259

hobbies that involved physical exertion for fear of provoking a further cardiac event. This was 260

particularly the case in the white British and Indian groups. The need for these changes had an 261

impact on people’s self-confidence. 262

I realised how tired I was and I didn’t want to do anything else and I let people arrange things and 263

do things, whereas I’ve never been like that, I’ve always, oh I can do it, you know. But I just let 264

them all get on with it and I just felt very, very tired. (Female4, white British, 80s) 265

Many who were healthy before, started to see themselves in a sick role in the long term, not just in 266

the immediate aftermath of the acute cardiac event. There was a fear of heavy lifting across all 267

three groups, irrespective of ethnicity and socio-economic class, in both the post discharge period 268

and in the year following. Participants and their families reportedly perceived the participant to be 269

physically weaker after the cardiac event. Participants made practical adaptations (reducing 270

housework, changing job roles) to their activities in daily life in order to adapt to their perceived or 271

actual physical limitations. 272

When it comes to lifting stuff then I’m not allowed to do that. ...I had got a little out of breath 273

cutting the lawn and doing some vacuuming in the house, so I just have to take it easy. I rush 274

around doing stuff. Maybe I just have to take it a little more leisurely. (Male9, white British, 80s) 275

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This fear of heavy lifting is particularly relevant for the Bangladeshi group who had a higher number 276

of younger males with young dependent families, in manual jobs. There was little opportunity for 277

alternative roles, impacting on their identity as the main breadwinner for their family. 278

Mentally I think I’ve had a heart attack. My doctor said I’ve got a weak heart, ‘Don’t do this, don’t 279

do that.…..Obviously as a man, obviously if you have family, obviously the first thing you think 280

about is money. …. So that’s why I’m worried. So money worries financial worries sometimes. If 281

you are very badly problem in financial then it makes you upset and you can put yourself in 282

depression… I don’t want to be dependent. I don’t want for someone to support me. I feel 283

humiliated… Like I’m just sitting down, sleeping, working, smoking, eating, and she’s earning 284

money and she’s buying food for me. I don’t want to do that. (Male5, Bangladeshi, 40s) 285

3) Attitudes to future 286

Across the participants, amongst the working and non-working population in the Indian and white 287

British group, there was a heterogeneity in personal attitudes to the event and how they adapted 288

with many reporting feeling lucky to be alive and optimistic. 289

If you, you know, you could sit around and grumble but you’re only grumbling at yourself aren’t 290

you?... Don’t think, don’t dwell on your heart attack, get on with, your life I mean… (Female4, 291

white British, 80s) 292

A positive attitude to the future was reported less by Bangladeshi participants, the majority of whom 293

were working age and from a more socioeconomically deprived background. Many in this group 294

expressed financial concerns related to limitations in future employment options, which appeared to 295

negatively impact on their overall views about the future. Only one working participant in the 296

Bangladeshi group expressed optimism. They however differed from the other Bangladeshi 297

participants as they had a skilled non-manual job and had attended higher education. 298

A number of participants across the three groups expressed a strongly fatalistic attitude to the 299

future, irrespective of age, gender, working status, religion or socioeconomic group. 300

So always believe what happens by the Allah, praying, all these things, they are doing their best 301

but everything in his hands, what I believe...Why should worry? If I need to go again. Worry make 302

you worst don’t it? If you worry about something, I don’t take in the worry. But now what will 303

happen will happen, no one can stop it. Why should I worry? (Male10, Bangladeshi, 70s) 304

Faith was expressed as being important in adaptation in many participants, primarily among the 305

Bangladeshi group. 306

But I suppose it all depends how much faith you have on the Almighty. Since I strongly believe in 307

the Lord, I have a strength within me to come over it, so people who, they have weak faith they’re 308

more worried, I suppose they are more worried than me. ...If you have strong faith that gives you 309

strength in order to endure the situation and overcome it and adjust to it. (Male12, Bangladeshi, 310

60s) 311

4) Social and Professional support for adaptation 312

313

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a) Family/friends 314

Most participants described excellent support from friends, family and work colleagues. Participants 315

reported this led to increased morale, as well as provided help with physical and domestic tasks. 316

My son lives not far from my house. I see him every day. We’re a close family. I’ve got brothers, 317

sisters-in-law, nephews. We are very close. Just a phone call and they’ll all be there. So that way 318

I’m really happy. Lucky anyway…. When you can count on somebody, even in the back of your 319

mind, you relax. At least you know somebody cares and they are there when you need them. That 320

makes all the difference to me. (Male13, Indian, 60s) 321

The difference a supportive, meaningful social network made for psychological adaptation after 322

illness was illustrated by two female Bangladeshi participants, both widowed, living within an 323

extended family in the same socially deprived area. One participant reported moderate low mood 324

and the other reported no problems with mood. 325

With the first participant it appeared she felt help was given grudgingly by family members and she 326

felt very much alone despite living in a large household. 327

She want liaison office...She’s saying she can tell her house problem, if anyone abuse her, you 328

know, tell her off and this that, to ask her to do that sort of thing. She’s saying, no they’re not 329

doing it at the moment, she says, how long they keep doing, you know, looking after her, giving 330

her food. She says one day they will get angry and might say something to her so she need to tell 331

someone that sort of thing. That’s why she need someone to talk to, someone like she can easily 332

access. (Female15, Bangladeshi, aged 60s, moderate low mood, translated) 333

The second participant described an extremely supportive network. 334

’Her family are taking care of her so she can, you know. ..She doesn’t have to think about anything 335

in the house, you know, financially, whatever, cleaning, cooking, doesn’t have to worry about 336

anything. …..They arrange everything… (Female14, Bangladeshi, aged 60s, no low mood reported, 337

translated). 338

b) Professional service support 339

i) NHS services: GP/Hospital 340

In all three ethnic groups, very few saw GP services as a valuable source of psychological or practical 341

support after discharge. Two participants in the Bangladeshi group reported rude, discriminatory or 342

uncaring staff in particular hospitals. Some Bangladeshi individuals highlighted concerns that family 343

were being used as interpreters, or reported ineffective interpreters who were formally employed 344

by the NHS. 345

The white British and Indian groups, working in managerial or professional roles, were the 346

predominant groups who reported using the internet, reading the leaflets provided or asking for 347

advice from friends and family who were in the medical profession. Few Bangladeshis were able to 348

read the leaflets or access the internet for more information. 349

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I have a friend who was a cardiology nurse, so I had a chat with her. Also I looked it up on the 350

internet. And I also spent some time reading the angiogram notes to see what condition I was 351

really in. (Male1, white British, 50s) 352

ii) Cardiac rehabilitation programme 353

Just under half of participants attended a cardiac rehabilitation programme, and the remainder 354

reported actively declining or that they were not offered or were unaware of a cardiac rehabilitation 355

programme. More participants from the white British group reported attending the programme and 356

more in the Bangladeshi and Indian groups stated they were unaware of the programme. 357

Of those that attended the cardiac rehabilitation programme, all but two participants found it a 358

positive experience, offering useful, in depth information on their condition. They reported it 359

increased their confidence and that meeting peers and group therapy benefited them 360

psychologically. 361

I see the difference in myself when I came out of the class. It was very useful.... and to hearing the 362

others... But the class actually helped me to understand more, and listening to other people’s 363

stories. ...Actually the education at that class actually is the main thing really helpful in every way, 364

for the medication, or the exercise and the relaxation. That gave me more confidence and to 365

relieve some of my fear. GPs don’t have the time and everything. So this is actually three hours or 366

two hours, 10 till 1, three hours. Really relaxed and get more information... (Male9, Indian, 50s) 367

Two of the elderly retired participants, one female Bangladeshi and one male white British 368

participant, went on to have further heart attacks following exercise rehabilitation and they 369

attributed it to ‘overdoing it’ as a result of these sessions. 370

She says there’s a place in XXX, I don’t know, leisure centre or, she went there for two weeks and 371

after that she had a heart attack, again. After the first episode she had a second one again, so 372

that’s why she didn’t go. (Female15, Bangladeshi, 60s via translator) 373

These participants also expressed a fear of heavy lifting. 374

Of the eight participants who stated they were unaware of a rehabilitation programme, seven were 375

from the more socioeconomically deprived Bangladeshi group. It is not known if they were not 376

offered the service, there was not an appropriate service for their condition or there was an issue 377

with the language in which the service was provided. 378

5. Practical adaptations made after the event. 379

i) Return to work 380

Returning to employment was seen to present particular challenges. In the Indian and White British 381

groups, especially amongst those in professional or managerial posts, the cardiac event prompted 382

change in the nature of employment e.g. more part time work, or giving up a previous work role. 383

They generally reported feeling supported in their work environment and were able to return to 384

work in an adapted role. 385

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Quite a lot of the work I was doing part-time means humping heavy stuff around, and I think a 386

combination of being told maybe you’re not as fit as you should be, and you can’t lift anything, 387

and also my back pain, so I’ve not gone back to doing that job. I’ve been given another job which 388

is less strenuous, but even that, I don’t work that often. It’s very part-time, if you like. Mostly 389

administrative. (Male18, white British, 60s) 390

There was flexibility in their roles and opportunity for social support from team members. 391

…And they was kind. They were saying, go home a bit early, don’t overdo it, you know edge back 392

into work and everything else. So it worked out very, very well ...Colleagues at work were 393

supportive (Male2, white British, 50s) 394

This is in contrast to the more manual and solitary (e.g. mini-cab driver) posts of the Bangladeshi 395

workers. Only one of the five Bangladeshi participants who were working prior to the event was 396

able to return to their original work role by twelve months post-event. The Bangladeshi group were 397

predominantly from a younger age group with dependent families (only one retired participant). As 398

discussed earlier, this group expressed more negative emotions and fear of the future as their 399

perceived health status was seen as a barrier to returning to work. There were also fewer 400

opportunities for alternative working or workplace adaptations to take into account their new 401

circumstances. 402

Some of the Bangladeshi participants related their negative emotions to the fact they were at home 403

all day with no purposeful employment. These participants were more likely to express feeling both 404

physically and mentally weak. 405

Because every hours, every day, about five/six hours you’re working you different life, you know, 406

different thing, you’re working. Always you sit in home, that’s …... doesn’t help you feel 407

particularly good? No, No. (Male19, Bangladeshi, 50s, long term unemployed) 408

ii) Lifestyle changes 409

All three groups independent of age, sex and socio economic background focussed on the 410

importance of making active lifestyle changes and reported adopting dietary changes, with the 411

Bangladeshi group particularly reducing red meat consumption. In some, concern about triggering a 412

future heart attack prevented exercise to the same level as previously. 413

I did become very much careful about the red meat, avoiding the fatty food and all that...I walk a 414

little bit, I go for walk, although I can’t walk much...being careful what I eat, you know…since then 415

I have taken some effort myself of taking some medicines. (Male16, Bangladeshi, 61 years) 416

Participants from all three ethnic groups, and all socioeconomic backgrounds, reported that they 417

would like access to psychological support (group therapy or individual one-to-one therapy) to aid 418

adjustment and improve mental health following their cardiac event. 419

If there are any people that you can consult or talk to, I’m a) not aware of anybody, and b) I think 420

they have to be kind of informally accessible. I think it’s a barrier if you have a lot of form filling 421

and red tape and stuff to go through. If you’re able to say, ‘Look, can I come and have a chat… It 422

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would be enormously helpful if there was a local group, a local person that understood the 423

conditions and the treatments. (Male6, white British, 50s) 424

DISCUSSION 425

Across the three groups, participants showed heterogeneity in reported experiences of the cardiac 426

event and its subsequent psychological and physical impact. Adaptation to the event, both 427

psychologically and physically, did not appear to relate to the severity of the initial event, but varied 428

by socioeconomic status, age and ethnicity. 429

Low mood, anxiety, fatigue and fear of heavy lifting following the cardiac event were common 430

themes to all. There were differences in the psychological adaptation experienced after the cardiac 431

event between the ethnic groups, which was partly explained by differences in socio-economic 432

status and occupations prior to the cardiac event. 433

Participants in the Bangladeshi group (with the younger mean age of 58 years, and from more 434

manual occupations) tended to experience more mental health issues alongside physical symptoms, 435

especially fatigue. This was strongly associated with difficulties with returning to employment and 436

associated financial concerns with resultant negative impact on self-esteem. Some members of this 437

group were fatalistic, in particular they made reference to their faith, saying for example, ‘Allah will 438

look after me’. This belief appeared to help acceptance and adaption to their new circumstances 439

after the cardiac event. In the male Indian group, most reported less low mood and fewer physical 440

health symptoms in comparison to the white British and Bangladeshi groups, with a tendency to 441

normalise the event in their accounts. 442

Comparison with existing literature 443

There is little qualitative literature exploring the experiences and impact of heart disease for UK 444

South Asian populations. Research has shown that job uncertainty is linked to deterioration in 445

health status21

. This is likely to be a factor in the negative adaptation following a cardiac event we 446

found in men in the Bangladeshi group. 447

Older Indian males in our study appeared to show more positive adaptation, and attempted to 448

normalise the experience. Evidence from previous studies show they have worse outcomes in terms 449

of secondary cardiac events after angina management than white British22

. It is possible that there is 450

more positive adaptation psychologically but there is an increased genetic risk2 4

or that the 451

normalisation means they make fewer efforts to change unhealthy lifestyle behaviours. The latter is 452

supported by a qualitative study based in Leicester which examined the experiences and needs of 453

one ethnic group - Hindu Gujarati patients and partners post Myocardial Infarction which 454

highlighted a lack of lifestyle changes23

. Similar findings of non-adherence to diet or other lifestyle 455

changes by UK South Asians were seen in two other qualitative studies24 25

which examined South 456

Asian attitudes to lifestyle coronary risk factors and reported that lifestyle changes were not made 457

or not adhered to. 458

In our study, fatigue, as a multidimensional concept involving tiredness, weakness and lack of energy 459

was a common theme. This may be a somatic expression of the negative psychological effect of the 460

event, or physical sequelae related to reduced heart functioning (heart failure) due to the event. 461

There is evidence to support this as a widespread issue in patients with long term illnesses including 462

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coronary heart disease26

. Our study found that the fear of heavy lifting, which persisted, limited full 463

physical rehabilitation long term. This does not appear to be raised in similar qualitative studies27

. 464

Fear of lifting may be due to conflicting or ambiguous medical advice28

. 465

The need for individually tailored rehabilitation is supported by other studies24 25

which highlighted a 466

need for a tailored individual programme for South Asians which avoids stereotyping, but recognises 467

cultural barriers to change. However, the former study also cautioned that not every difficulty can 468

be attributed solely to the person’s ethnic background, and similarly we found that apparent initial 469

ethnic differences in psychological adaptation in our Bangladeshi group were explained to a large 470

extent by much greater problems returning to work related to the types of employment and 471

younger age of this group. Our study is in keeping with others 29 23

, that have reported 472

socioeconomic status, age and gender are as important as ethnicity when examining barriers, 473

psychological or physical, in adapting to cardiac disease. Indeed it has been argued that for long 474

lasting change cardiac prevention initiatives need to incorporate cultural sensitivity whilst also taking 475

into account the socio economic circumstances of ‘at risk ‘ communities30 31

. This appears especially 476

pertinent to our Bangladeshi group. A lower number of Bangladeshis compared to other groups in 477

our sample reported attending the cardiac rehabilitation programme, and most who had not 478

attended were unaware of the existence of these services. Given that most of the participants who 479

had attended cardiac rehabilitation reported that it was beneficial, this may also be a factor in the 480

more problematic psychological impact and adaptation after the cardiac event in the Bangladeshi 481

group. 482

Strengths and limitations of the study 483

We purposively sampled a range of participants from white British, Indian and Bangladeshi 484

participants and explored experiences and attitudes of the psychological impact and adaptation 485

after a cardiac event. We sampled to ensure a broad range of views and experiences from patients 486

with a wide range of ages, working and retired and from a variety of socio economic backgrounds 487

and education. Our Bangladeshi participants were on average younger than our white participants 488

(mean age 58 versus 72 years), and factors associated with their age, such as employment status and 489

dependent family members may have influenced their experiences and adaptations and thus the 490

apparent differences between the groups. We acknowledge that the broad range of ages included 491

may mean generational differences may have had an impact on our findings.A strength of our study 492

was that although we used trained interviewers who spoke Sylheti to make it easier for the 493

participants to talk at length in their own language, the main researcher could also understand 494

Bengali and the related dialect Sylheti. The researcher understood the interpreter interviewing the 495

participants in Sylheti, allowing her to monitor the discussion during the interview, helping to ensure 496

effective probes and follow ups were used and also to verify the accuracy of the interpreter’s work. 497

There is potential for sampling bias as the more motivated and pro-active, less depressed 498

participants may have agreed to take part. Moreover, women were under represented; we were 499

able to recruit two female Bangladeshi participants (a group known to be hard to recruit), however 500

there were no Indian women in the sample. Recruitment proved to be a particular challenge 501

especially amongst female and Bangladeshi and Indian groups possibly due to cultural or literacy 502

issues as the initial approach was from their GP practice. The South Asian community is culturally 503

heterogeneous; therefore caution is needed with data interpretation on cultural issues. Within 504

subgroups there are differences in lifestyle, diet, alcohol consumption, religious and physical 505

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differences. The findings do however offer important insights for cardiac rehabilitation across ethnic 506

groups. 507

Implications for clinical practice and research 508

In this study there was evidence of greater negative adaptation to a cardiac event in the Bangladeshi 509

group with younger men especially perceiving difficulties returning to employment following the 510

event. This was not seen to be adequately addressed in their rehabilitation, and more tailored help 511

and support in relation to returning to work should be considered. Participants from all ethnic 512

groups reported concerns about fatigue and expressed anxiety regarding heavy lifting and physical 513

exertion longer term. Further research should evaluate if this is a consistent finding in a larger 514

representative sample across different Black and Minority Ethnic groups. 515

CONCLUSIONS 516

Overall, successful adjustment after an acute cardiac event in our sample was related to socio 517

economic background, age and individual personalities, with some cultural influences. Current 518

rehabilitation services and follow up in primary care should consider the differing psychological and 519

physical changes and adaptations that may be needed longer term, especially with regard to physical 520

activity, heavy lifting and fatigue levels. Bangladeshi participants in particular experienced less 521

adaptation related to difficulties in returning to employment and associated financial hardship. 522

There is a need for extra support (psychological, practical and financial) with a specific focus on 523

working age people with families returning to manual work. 524

Funding 525

This study is funded by the National Institute for Health Research (NIHR) School for Primary Care 526

Research (SPCR), UK. 527

http://www.nihr.ac.uk/funding/school-for-primary-care-research.htm 528

Competing interests: none 529

The authors report no conflicts of interest. This article presents independent research funded by the 530

National Institute for Health Research (NIHR), UK. The views expressed are those of the author(s) 531

and not necessarily those of the NHS, the NIHR or the Department of Health. The funder has had no 532

role in the study design; in the collection, analysis, and interpretation of data; in the writing of the 533

manuscript or decision to submit for publication. 534

Author Contributions 535

MB and KW planned the overall study. KW and FS advised on study design. MB, FS and KW 536

participated in meetings and advised on study documents. MB carried out data collection for the 537

study. MB, FS and KW participated in data analysis. MB wrote the manuscript with significant and 538

equal editorial input from both FS and KW. MB, FS and KW all read and approved the final version of 539

the manuscript. 540

Patient consent: Obtained 541

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Ethics approval: Obtained from the East of England (Hertfordshire) Research Ethics Committee: REC 542

reference number 10/H0311/41 543

Provenance and peer review: Not commissioned; externally peer reviewed 544

Data sharing statement: No additional data are available 545

546

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stories: men and women after a cardiac incident. J Health Psychol 2011 Mar;16(2):322-31. 619

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disease amongst South Asians in Leicester: a focus group study. Fam Pract 2000 Aug;17(4):293-7. 621

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(27) Medved MI, Brockmeier J. Heart stories: men and women after a cardiac incident. J Health 624

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(29) Nazroo JY. South Asian people and heart disease: an assessment of the importance of 628

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Consolidated criteria for reporting qualitative studies (COREQ):

32-item checklist

An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the

United Kingdom: a qualitative study.

Developed from:

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a

32-item checklist for interviews and focus groups. International Journal for Quality in Health Care.

2007. Volume 19, Number 6: pp. 349 – 357

YOU MUST PROVIDE A RESPONSE FOR ALL ITEMS. ENTER N/A IF NOT

APPLICABLE

No. Item Guide questions/description Reported

Domain 1: Research team and reflexivity

Personal Characteristics

1. Interviewer/facilitator Which author/s conducted the interview or focus

group? Dr Mimi Bhatttacharyya was main interviewer for all interviews. (line 138-139)

2. Credentials What were the researcher’s credentials? Dr Mimi

Bhattacharyya PhD MRCP (UK).(title page)

3. Occupation What was their occupation at the time of the study?

Medical doctor (General Practitioner and clinical researcher). (title page)

4. Gender Was the researcher male or female? Female

5. Experience and training What experience or training did the researcher

have? The researcher had qualitative interviewing skills and analysis training and is an experienced

clinician as well as a post doctoral researcher. She was supervised by FS, Senior lecturer in Medical

Sociology and qualitative expert, and KW who has extensive experience in qualitative research.

Relationship with participants

6. Relationship established Was a relationship established prior to study

commencement? No.

7. Participant knowledge of the interviewer What did the participants know about the

researcher? e.g. personal goals,reasons for doing the research? Participants knew that the

researcher worked at the Research Department of Primary care and Population health, UCL.

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8. Interviewer characteristics What characteristics were reported about the inter

viewer/facilitator? e.g.Bias, assumptions, reasons and interests in the research topic. Participants

know the researcher worked in a primary care department in a university and was a South Asian

female.

Domain 2: study design

Theoretical framework

9. Methodological orientation and Theory What methodological orientation was stated to

underpin the study? e.g.grounded theory, discourse analysis,ethnography, phenomenology, content

analysis Framework analysis. (lines 153-154)

Participant selection

10. Sampling How were participants selected? e.g.purposive,

convenience, consecutive,snowball. Purposive.(line 132)

11. Method of approach How were participants approached? e.g.face-to-

face, telephone, mail, email. Participants were recruited through primary care practices. They were

identified by medical staff from medical records initially with a letter sent from the practice.

Responses of interest in the study were sent to the researcher who then contacted the patients to

provide more information and arrange an interview. (line 133)

12. Sample size How many participants were in the study? 28.(line

170)

13. Non-participation How many people refused to participate or dropped

out? Reasons? 209 people approached, 29 responded as interested, one declined after further

information given, 28 interviewed and none dropped out. (line 170)

Setting

14. Setting of data collection. Where was the data collected? e.g.home, clinic,

workplace Localities that were convenient to participants-for the majority this was in their home.

Two interviews took place in a research office in the university.(line 149)

15. Presence of nonparticipants Was anyone else present besides the participants

and researchers? Occasionally a spouse or an interpreter.(line 139)

16. Description of sample What are the important characteristics of the

sample? e.g. demographic data, date. Gender, age, sex, occupational status and ethnic group.(line

172, table 1)

Data collection

17. Interview guide Were questions, prompts, guides provided by the

authors? Was it pilot tested? A topic guide was developed by the research team and two initial

interviews acted as a pilot.(line 135)

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18. Repeat interviews Were repeat interviews carried out? If yes, how

many? No.

19. Audio/visual recording Did the research use audio or visual recording to

collect the data? Data from all interviews were audio recorded using a digital recorder. (line 150)

20. Field notes Were field notes made during and/or after the inter

view or focus group? Yes.(line 151)

21. Duration What was the duration of the inter views or focus

group? 45-60 minutes on average. (line 150)

22. Data saturation Was data saturation discussed? Yes.(line 130)

23. Transcripts returned Were transcripts returned to participants for

comment and/or correction? No.

Domain 3: analysis and findings

Data analysis

24. Number of data coders How many data coders coded the data? One (Dr

Mimi Bhattacharyya).

25. Description of the coding tree Did authors provide a description of the coding

tree? No.

26. Derivation of themes Were themes identified in advance or derived from

the data? Analysis was inductive and themes were developed from the data. (line 157)

27. Software What software, if applicable, was used to manage

the data? Data were transcribed verbatim into word documents of transcripts. Themes were

grouped by cutting and pasting between documents and organised on excel spreadsheets. (line 159)

28. Participant checking Did participants provide feedback on the findings?

No.

Reporting

29. Quotations presented Were participant quotations presented to illustrate

the themes/findings? Was each quotation identified? e.g. participant number. Participants were

identified by participant number, age range, sex, and ethnic group. (Example, line 200)

30. Data and findings consistent Was there consistency between the data presented

and the findings? Yes. (line 188)

31. Clarity of major themes Were major themes clearly presented in the

findings? Yes. (line 190)

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32. Clarity of minor themes Is there a description of diverse cases or discussion

of minor themes? Yes. (line 430-438)

Once you have completed this checklist, please save a copy and upload it as part of your submission.

When requested to do so as part of the upload process,please select the file type: Checklist. You will

NOT be able to proceed with submission unless the checklist has been uploaded. Please DO NOT

include this checklist as part of the main manuscript document. It must be uploaded as a separate

file.

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Consent

Study title: An exploration of the psychological impact and adaptation post-cardiac event in South Asians in

the United Kingdom

UCL RESEARCH DEPARTMENT OF PRIMARY CARE &

POPULATION HEALTH

ROYAL FREE CAMPUS, ROWLAND HILL STREET LONDON NW3 2PF

Study Number: Patient Identification Number

CONSENT FORM Name of Researchers: Dr Mimi Bhattacharyya, Dr Fiona Stevenson, Dr Kate Walters

Any questions to Dr.M Bhattacharyya, Research Department of Primary Care and Population Health,

University College London, Telephone 020 7794 0500 ext 33997. Email [email protected]

With regard to Patient Information Sheet V2:

An exploration of the psychological impact and adaptation post-cardiac

event in South Asians in the United Kingdom Please initial box

1. I confirm that I have read and understood the information sheet for the above study

and have had the opportunity to consider the information, ask questions and have had

these answered satisfactorily.

2. I understand that my participation is voluntary and that I am free to withdraw at any

time, without giving any reason, without my medical care or legal rights being affected.

3. I understand that relevant sections of my medical notes may be looked at by

regulatory authorities and sections of data collected during the study may be looked

at by individuals from the department of Primary Care at UCL or from the NHS trust,

where it is relevant to my taking part in research. I give permission for these

individuals to have access to my records. I also give permission for my GP to be

informed of my participation in the study.

4 I agree to participate in a recorded in-depth interview on my experiences of coronary

heart disease. This interview will last up to one hour.

5 I agree to anonymised quotes from my interview with the researcher being used in a

form which will not be identifiable as being from me. (We will notify you if the

research is published and send you a copy of the manuscript if you request this).

6 I agree to take part in the above study.

Name of Patient................................................. Date Signature.................................................

Name of Researcher........................................ Date Signature...............................................

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Documents

BMJ Open...For peer review only An exploration of the psychological impact and adaptation post-cardiac event in South Asians in the United Kingdom. Journal: BMJ Open Manuscript ID