Kate Hunt, MRC Social and Public Health Sciences Unit

1. Kate Hunt, MRC Social and Public Health Sciences Unit • Using qualitative and quantitative methods to research people’s understandings of family histories of heart disease • Interdisciplinary approached to studying inequalities in health • Durham, April 2004

2. Background Quantitative Qualitative Conclusions Why research ‘lay’ understandings of family histories of CHD? • Epidemiological perspective • Risk factor for CHD and other diseases • ‘Positive’ FH - contested • Social science perspective • Inheritance part of family culture • Previous literature - importance of heredity • - S. Wales - Davison et al Coronary candidacy Focus on exceptions to what expected - Uncle Norman and last person) Impact of FH on receptiveness to health promotion advice

3. Background Quantitative Qualitative Conclusions Why research ‘lay’ understandings of family histories of CHD? • FH recognised as risk factor by epidemiologists, health professionals, and ‘lay’ public, but • Who thinks they have a FH? • - NB class and gender inequalities in heart disease • What factors are weighed up? • No systematic investigation of which factors affect people’s perceptions • Does having a FH affect CHD-related behaviours • Perceived  risk because of FH - spur or barrier to reducing CHD behavioural risk factors?

4. Background Quantitative Qualitative Conclusions Methods • Context: West of Scotland • Iteration between different methodologies • Quantitative studies • Twenty-07 Study • Midspan Family Study & Renfrew-Paisley Study • Qualitative study • subsample from Midspan Family Study (Carol Emslie) Funded by ESRC • Others in collaboration with CE, Graham Watt, Charlie Davison, Carole Hart, Alex McConnachie

5. Background Quantitative Qualitative Conclusions The Twenty-07 study • 3 cohorts (born early 1930s, 1950s, 1970s) • c. 1000 in each cohort • Longitudinal study of social patterning of health • Resident in CCC in 1987 • Questions on FH in 1995 questionnaire

6. Background Quantitative Qualitative Conclusions The Midspan family study • Clinical epidemiological study • Biological and social risk factors collected from questionnaire and clinical measurements,1996 • n=2338 (1040 men,1298 women) • Aged 30-59 • Resident in Renfrew-Paisley

7. The Midspan family study Renfrew-Paisley study 1972-1976 c80% residents aged 45-64 Monitored for subsequent mortality (death certificates) Midspan family study 1040 men,1298 women Adult offspring of 1477 couples Married couples 2 generation study  opportunity for research on family history

8. Twenty-07 & Midspan family study Background Qualitative Conclusions Quantitative Quantitative question: “Some people think that particular illnesses or weaknesses run in their families, others don’t. Do you think there are any conditions, weaknesses or illnesses which run in your family?” “Heart disease/heart trouble”  ‘perceived FH’ CHD • pFH • Midspan 1996 - 16% (Watt et al 2000) • Twenty-07 - 20%(Hunt et al 2000)

9. Background Quantitative Qualitative Prevalence of perceived FH by sex and class (MFS) Conclusions Watt et al (2000), JECH; 54: 859-863

10. Background Qualitative Conclusions Midspan study: Experience of heart disease in parents Quantitative •  Does a parental death from CHD relate to perceptions of a FH of heart disease? • Experience of HD in parents • 26% sons and daughters in MFS - at least one parental CHD death • Higher in older respondents (RR 1.18 per 10 yr  age) • Higher in manual classes (RR 1.37 M vs NM) • Comparison of death certificates & offspring report • Accurate offspring reports (89% CHD deaths) Watt et al (2000), JECH; 54: 859-863

11. Background Quantitative Qualitative Conclusions Perceptions of FH by sex and class Watt et al (2000), JECH; 54: 859-863

12. How important are parental CHD deaths in people’s assessments of inheriting heart disease? • What other factors do people take into account? • In what ways are these factors similar to epidemiological assessments of risk? • In what ways do they differ? •  Qualitative study

13. Factors Background Quantitative Qualitative Conclusions Qualitative subsample Midspan family study 1040 men,1298 women Adult offspring of 1477 couples • Purposive subsample of 61 respondents • Men (n=30); women (n=31) • pFH CHD (n=31); no pFH an illness/weakness (n=30) • Manual (n=30) and non-manual (n=31) background • In-depth interviews - health in family

14. Factors considered in assessing FH Background Quantitative Qualitative Conclusions • Number, age and closeness of (blood) relationship of affected relatives. • More weight given to (younger) deaths in 1st degree relatives. Deaths at older ages often ‘discounted’. • Depends on extent of knowledge • ‘Patterns’ • Where more than one death • Obvious pattern could lead to more weight being given to deaths at older ages Hunt et al (2001), Lancet 357: 1168-1171

15. Factors considered in assessing FH Background Quantitative Qualitative Conclusions • E.g.  weight being given to death at older ages because of ‘patterns’ • “My father died aged 71 of a heart attack. His father died, aged 71, also of a heart attack, and his father died, aged 71, also of a heart attack, and it’s all on the family gravestone: aged 71, aged 71, aged 71, three of them. So I keep saying I’m OK til I get to 71 and then I start worrying” Hunt et al (2001), Lancet 357: 1168-1171

16. Degree of certainty about FH: a simple dichotomy? Background Quantitative Qualitative Conclusions • Some certain (either pFH or no FH), but many ambivalent. • Incomplete knowledge • Most knew about grandparents, few knew about earlier generations • Loss of contact with one ‘side’ - family rifts, geographical distance, death of ‘repository’ of knowledge of family health • Gender and social class • Men from manual backgrounds most ambivalent Hunt et al (2001), Lancet 357: 1168-1171

17. Understandings of FH Background Quantitative Qualitative Conclusions • Men seemed to require more relatives than women to judge had a FH • Distinction between having heart disease in family (having a pFH) and being personally at  risk because of heart disease in family • Similarities/differences in likenesses and lifestyles; • Linking of risk factors/disease to traits on ‘sides’ of family Hunt et al (2001), Lancet 357: 1168-1171

18. Understandings of FH Background Quantitative Qualitative Conclusions • Distinction between family and personal at risk when ‘heart disease in family’ • e.g. pFH and  personal risk “Well [heart disease] runs in ours anyway, and yet it’s funny because I’m the only girl who takes, who has it, I seemed to have followed my mum in everything. I’ve got three other sisters who have no problems with their hearts … but I take more the heart side of my mum.” • e.g. pFH and NO  personal risk “[S]trangely enough I don’t worry [about getting heart disease]. I always feel that sort of build-wise I take more after my father’s side of the family than my mother’s …. I think I said just because of the thinner side I feel it’s more my father’s side that the sort of body type things are taking after” Hunt et al (2001), Lancet 357: 1168-1171

19. Understandings of FH Background Quantitative Qualitative Conclusions Similarities Number, age at death, and relationship of affected relatives Differences? Notions of what constitutes a premature death Ambivalence/fluidity - many ambivalent, and FH constantly under review Distinction between FH and whether this is a personal risk factor Degree to which events are ‘expected’ or ‘unexpected’ and ‘explicable’ or ‘inexplicable’ - notions of candidacy Hunt et al (2001), Lancet 357: 1168-1171

20. Understandings of FH Background Quantitative Qualitative Conclusions Hunt et al (2001), Lancet 357: 1168-1171

21. Background Quantitative Qualitative Conclusions • CHD as ‘man’s disease’ • CHD as ‘good way to go’ • Heightened importance of family exceptions to coronary candidacy Emslie et al (2001), SHI 23: 203-233 Emslie et al (2001), Coronary Health Care 5: 25-32 Hunt & Emslie (2001), IJE 30: 442-446

22. The Twenty-07 study Background Quantitative Qualitative Conclusions • Do perceptions of familial risk impact on health-related behaviours? • Salience (self-assessed coronary ‘candidacy’) • ‘Very’ and ‘quite’ unlikely to get CHD vs. all others • Adherence to conventional coronary health promotion • If CHD in family particularly important a) not to smoke; b) to take exercise; c) to eat a health diet vs. all others • Adherence to ‘fatalism’ • “If heart disease runs in someone’s family it doesn’t matter what they do; whether they get heart disease or not is out of their hands (SA and A= high; SD and D = low) Hunt et al (2000), Health Education Research 15: 131-143

23. 2007 study: relationship of pFH etc. to smoking? Background Qualitative Conclusions Quantitative

24. 2007 study: relationship of perceived FH to smoking? Background Qualitative Conclusions Quantitative

25. Uncle Norman and visible risks for CHD Background Quantitative Qualitative Conclusions • 6068 men from Renfrew-Paisley study • Survival and death by age 70 • ‘Unwarranted survival’ in high ‘visible’ risk men (BMI>30, smoked 20+ cigarettes)? • 45% died by age 70, 23% died of CHD • Those who survived more favourable profiles on other risk factors: height & cholesterol • ‘Anomalous deaths’ in low ‘visible’ risk men (BMI<25, never smoked)? • 13% died by age 70, 4% died of CHD • Those who died less favourable profiles on other risk factors: poor respiratory function, diabetes, previous CHD, & socio-economic deprivation

26. Midspan study: Summary Background Quantitative Qualitative Conclusions • Accurate offspring reports of date/cause of death • Parental CHD deaths important • In comparison with those with 2 living parents: people with one parental CHD death 3x as likely to report pFH; people with two parental CHD deaths 8x as likely. • Not everyone with parental CHD death sees themselves as having a family history • Only 23% sons & 34% daughters with at least one parental CHD death thought that had a FH • Men from manual backgrounds most at risk of premature CHD death, but least likely to interpret parental CHD death as pFH Watt et al (2000), JECH; 54: 859-863

27. Understandings of FH Background Quantitative Qualitative Conclusions • Inheritance commonly seen as important risk factor for CHD • People’s views on whether they have an inherited  risk of heart disease may be less categorical and less static than epidemiological assessments • new events, reevaluation in light of new information, striving to make sense of particular family events • Recognising an inherited risk in one’s family does not automatically translate into increased personal risk • Assessments of inherited risk and explanations for family coronary events affect willingness to take on preventive advice • Potential for miscommunication in clinical encounters

28. Mixing methods 9 Background Quantitative Qualitative Conclusions • Value of using different methodologies • Development from CD’s ethnographic research • Quantitative assessments • prevalence of FH • relationship of pFH to smoking • Complementary qualitative work • Further quantitative work (e.g. using MFS on ‘Uncle Norman’) • A dynamic process