A Comprehensive approach to needs assessment of sickle cell services: The value of seeking service users' views

ABSTRACT

The recent `Fair Shares for London' study used multiple methods to carry out a needs assessment of services for sickle cell disorders in Greater London. This paper reported on one of these, a series of focus group discussions with users of services for sickle cell disorders. The aims of the focus groups were as follows 1. To investigate and record service users' experiences, perceptions and opinions about current service provision for people with sickle cell disorders. 2. To structure the discussions so as to cover the same range of services investigated by the questionnaire surveys. Three focus groups, each consisting of 6-8 people, were conducted at different locations in London. The results of the focus groups reflect those of the questionnaire survey, indicating that service users recognise some recent improvements in service delivery, but that many aspects of services for sickle cell disorders in Greater London remain inadequate. Improvements most often mentioned included ambulance services and some aspects of acute care. Significant problems persist in the delivery of community services and education, housing and social services. Some examples of good practice in primary care were highlighted. However the majority of participants made little or no use of GP services due to previous negative experiences. The Fair Shares for London study shows how the use of qualitative methods in needs assessment can enhance and validate results. The focus group discussions made an important contribution to the overall findings, complementing and elucidating the results of the questionnaire survey of purchasers and providers, as well as identifying areas for further research.(AU)