Dealing with a bleeding nuisance: a study of haemophilia care in New Zealand.
OBJECTIVE
To describe the social and demographic characteristics of people with haemophilia in New Zealand and to identify key issues in their treatment.


METHODS
The research (1994-6) used a combination of quantitative and qualitative methods, including key person interviews and focus groups, a national survey (n=193), interviews (80), participant observation and consultative report writing (30 participant-consultants).


RESULTS
The study population was mainly (95%) male, somewhat younger than the general New Zealand population, and was 90% Caucasian but otherwise conformed closely to the socio-demographic profile of the general population. Participants clustered towards the severe end of the condition of haemophilia. There was great variation between participants in incidence of bleeds. Legs and arms were most commonly affected. The majority (61%) of bleeds were treated within six hours of detection. Despite considerable advances and an emphasis on the provision of adequate and prompt treatment, there is still much room for improvement to obviate problems such as joint damage, pain and the need for surgery.


CONCLUSIONS
People with haemophilia and haemophilia health service providers struggle to achieve optimal care.
Park
J
J
Department of Anthropology, The University of Auckland. j.park@auckland.ac.nz
Scott
K
K
Benseman
J
J
D000293:Adolescent; D000328:Adult; D000368:Aged; D003710:Demography; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006306:Health Surveys; D006395:Hemarthrosis / Q000453:epidemiology / Q000601:surgery / Q000628:therapy; D006467:Hemophilia A / Q000453:epidemiology* / Q000601:surgery / Q000628:therapy; D006801:Humans; D015994:Incidence; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009520:New Zealand / Q000453:epidemiology; D010146:Pain / Q000453:epidemiology; D059408:Pain Management; D012737:Sex Factors; D013997:Time Factors; D044465:White People