Table 1.

 Characteristics of patients and timing of interviews

Participant	Primary diagnosis	Age category	Sex	Religion	ECOG score at each stage*	Deprivation category†	Status	Home situation	Timing of interviews with patient
P01	Cancer	51-60	Male	Muslim	4, 4	2	Asylum seeker	Nuclear family	Stages 1‡ and 2; patient died
P02	Cancer	61-70	Male	Muslim	3	6	UK citizen	Nuclear family	Stage 1‡; patient died
P03	Cancer	30-40	Female	Muslim	3, 2, 2	1	UK citizen	Nuclear family	Stages 1-3
P04	Non-malignant illness	41-50	Female	Muslim	4, 4, 4	4	UK citizen	Nuclear family	Stages 1-3
P05	Leukaemia	30-40	Female	Muslim	2 ,3, 2	7	UK citizen	Nuclear family	Stages 1‡, 2, and 3
P06	Non-malignant illness	41-50	Male	Sikh	1, 1, 1	7	Asylum seeker	Alone	Stages 1-3
P07	Cancer	61-70	Male	Muslim	2, 2, 2	4	UK citizen	Alone	Stages 1-3
P08	Non-malignant illness	61-70	Male	Muslim	3, 3	4	UK citizen	Nuclear family	Stages 1‡ and 2‡
P09	Non-malignant illness	51-60	Male	Muslim	1, 1, 1	4	UK citizen	Nuclear family	Stages 1‡, 2, and 3‡.
P10	Non-malignant illness	81-90	Male	Sikh	3	2	UK citizen	Extended family	Stage 1‡; patient died
P11	Cancer	61-70	Female	Sikh	3, 3	5	Indian national	Extended family	Stages 1‡ and 2‡
P12	Cancer	61-70	Female	Sikh	2, 2, 2	4	Indian national	Lives with spouse	Stages 1‡, 2, and 3‡
P13	Cancer	30-40	Male	Muslim	1, 2, 2	3	UK citizen	Nuclear family	Stages 1‡, 2, and 3‡
P14	Non-malignant illness	61-70	Male	Muslim	2, 2, 2	4	UK citizen	Extended family	Stages 1‡, 2, and 3‡
P15	Non-malignant illness	51-60	Female	Muslim	3, 3	4	UK citizen	Extended family	Stages 1‡ and 2‡; stage 3 carer only interviewed
P16	Non-malignant illness	71-80	Female	Muslim	3, 3	6	UK citizen	Extended family	Stage 1‡; stage 2 carer only interviewed
P17	Non-malignant illness	51-60	Male	Sikh	1	4	UK citizen	Extended family	Stage 1
P18	Non-malignant illness	51-60	Female	Muslim	2, 2	5	UK citizen	Alone	Stages 1 and 2
P19	Non-malignant illness	71-80	Female	Muslim	4, 3, 3	4	UK citizen	Extended family	Stages 1‡, 2‡, and 3
P20	Cancer	41-50	Male	Muslim	4	4	UK citizen	Nuclear family	Stage 1‡; patient died
P21	Cancer	71-80	Female	Muslim	3	2	UK citizen	Extended family	Stage 1‡; stages 2 and 3 carer only interviewed
P22	Non-malignant illness	61-70	Female	Sikh	1	5	UK citizen	Nuclear family	Stage 1‡
P23	Non-malignant illness	61-70	Male	Muslim	3	4	UK citizen	Extended family	Stage 1; patient died
P24	Non-malignant illness	71-80	Male	Sikh	2	4	UK citizen	Lives with daughter	Patient not interviewed (dementia)
P25	Non-malignant illness	30-40	Female	Muslim	2, 2	5	UK citizen	Nuclear family	Stages 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.