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Table 2 Caregiver characteristics: self-reported

From: A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Characteristics
Number of caregivers interviewed
 Overall, n 21
 Face-to-face interview, n (%) 19 (90.5)
 Telephone interview, n (%) 2 (9.5)
Sex, n (%)
 Female 17 (81.0)
 Male 4 (19.0)
Mean age, years (range) 41.1 (26, 58)
Country of residence, n (%)
 UK 4 (19.0)
 USA 17 (81.0)
Ethnic background, n (%)
 Asian 2 (9.5)
 Hispanic or Latino 2 (9.5)
 Other, Greek European 1 (4.8)
 White 15 (71.4)
 Other 1 (4.8)
Highest level of education, n (%)
 High school/secondary school 2 (9.5)
 Some college or university 5 (23.8)
 College or university degree 7 (33.3)
 Post graduate qualification 6 (28.6)
 Missing 1 (4.8)
Main status, n (%)
 Employed full time 11 (52.4)
 Employed part time 2 (9.5)
 Other, disability 1 (4.8)
 Retired 1 (4.8)
 Stay at home 4 (19.0)
 Student 2 (9.5)
Number of children that the caregiver was primary caregiving for (range) 0–7
Number of children ever diagnosed with HLH, n (%)
 One 19 (90.5)
 Two 1 (4.8)
 Three 1 (4.8)
Relationship of caregiver to child/children with HLH diagnosis, n (%)
 Father 4 (19.0)
 Mother 16 (76.2)
 Sister 1 (4.8)
Number of children deceased attributed to HLH, n (%)
 None 18 (85.7)
 One 3 (14.3)
Physical or mental health issues, n (%)
 No 11 (52.4)
 Yes 10 (47.6)
  1. HLH, hemophagocytic lymphohistiocytosis; UK, United Kingdom; USA, United States of America