Table 1

 Characteristics of patients and timing of interviews

ParticipantPrimary diagnosisAge categorySexReligionECOG score at each stage*Deprivation category†StatusHome situationTiming of interviews with patient
P01Cancer51-60MaleMuslim4, 42Asylum seekerNuclear familyStages 1‡ and 2; patient died
P02Cancer61-70MaleMuslim36UK citizenNuclear familyStage 1‡; patient died
P03Cancer30-40FemaleMuslim3, 2, 21UK citizenNuclear familyStages 1-3
P04Non-malignant illness41-50FemaleMuslim4, 4, 44UK citizenNuclear familyStages 1-3
P05Leukaemia30-40FemaleMuslim2 ,3, 27UK citizenNuclear familyStages 1‡, 2, and 3
P06Non-malignant illness41-50MaleSikh1, 1, 17Asylum seekerAloneStages 1-3
P07Cancer61-70MaleMuslim2, 2, 2 4UK citizenAloneStages 1-3
P08Non-malignant illness61-70MaleMuslim3, 34UK citizenNuclear familyStages 1‡ and 2‡
P09Non-malignant illness51-60MaleMuslim1, 1, 14UK citizenNuclear familyStages 1‡, 2, and 3‡.
P10Non-malignant illness81-90MaleSikh32UK citizenExtended familyStage 1‡; patient died
P11Cancer61-70FemaleSikh3, 35Indian nationalExtended familyStages 1‡ and 2‡
P12Cancer61-70FemaleSikh2, 2, 2 4Indian nationalLives with spouseStages 1‡, 2, and 3‡
P13Cancer30-40MaleMuslim1, 2, 23UK citizenNuclear familyStages 1‡, 2, and 3‡
P14Non-malignant illness61-70MaleMuslim2, 2, 2 4UK citizenExtended familyStages 1‡, 2, and 3‡
P15Non-malignant illness51-60FemaleMuslim3, 34UK citizenExtended familyStages 1‡ and 2‡; stage 3 carer only interviewed
P16Non-malignant illness71-80FemaleMuslim3, 36UK citizenExtended familyStage 1‡; stage 2 carer only interviewed
P17Non-malignant illness51-60MaleSikh14UK citizenExtended familyStage 1
P18Non-malignant illness51-60FemaleMuslim2, 25UK citizenAloneStages 1 and 2
P19Non-malignant illness71-80FemaleMuslim4, 3, 34UK citizenExtended familyStages 1‡, 2‡, and 3
P20Cancer41-50MaleMuslim44UK citizenNuclear familyStage 1‡; patient died
P21Cancer71-80FemaleMuslim32UK citizenExtended familyStage 1‡; stages 2 and 3 carer only interviewed
P22Non-malignant illness61-70FemaleSikh15UK citizenNuclear familyStage 1‡
P23Non-malignant illness61-70MaleMuslim34UK citizenExtended familyStage 1; patient died
P24Non-malignant illness71-80MaleSikh24UK citizenLives with daughterPatient not interviewed (dementia)
P25Non-malignant illness30-40FemaleMuslim2, 2 5UK citizenNuclear familyStages 1 and 2

*Performance scale of Eastern Cooperative Oncology Group, recommended by World Health Organization: 0=asymptomatic; 1=symptomatic but completely ambulant; 2=symptomatic, <50% of time in bed during day; 3=symptomatic, >50% of time in bed, but not bed bound; 4=bed bound; 5=death.

†Carstairs’ deprivation index for Scottish postcode sectors 2001: 1=most affluent, 7=most deprived.31

‡Patient and carer interviewed jointly.