‘I can die today, I can die tomorrow’: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition

Objective. To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

A total of 128 adults with high-functioning autism spectrum disorders were surveyed concerning the process they went through to obtain their diagnosis and the subsequent support they received. Results suggested that routes to diagnosis were quite heterogeneous and overall levels of satisfaction with the diagnostic process were mixed; 40 % of respondents were ‘very/quite’ dissatisfied, whilst 47 % were ‘very/quite’ satisfied. The extent of delays, number of professionals seen, quality of information given at diagnosis and levels of post-diagnostic support predicted overall satisfaction with the diagnostic process. Important areas and suggestions for improvement were noted for all stages of the diagnostic pathway. Respondents also displayed above average levels of depressed mood and anxiety, with greater support being requested in this area

Utility of WHOQOL-BREF in measuring quality of life in Sickle Cell Disease

BACKGROUND: Sickle cell disease is the commonest genetic disorder in Jamaica and most likely exerts numerous effects on quality of life (QOL) of those afflicted with it. The WHOQOL-Bref, which is a commonly utilized generic measure of quality of life, has never previously been utilized in this population. We have sought to study its utility in this disease population. METHODS: 491 patients with sickle cell disease were administered the questionnaire including demographics, WHOQOL-Bref, Short Form-36 (SF-36), Flanagan's quality of life scale (QOLS) and measures of disease severity at their routine health maintenance visits to the sickle cell unit. Internal consistency reliabilities, construct validity and "known groups" validity of the WHOQOL-Bref, and its domains, were examined; and then compared to those of the other instruments. RESULTS: All three instruments had good internal consistency, ranging from 0.70 to 0.93 for the WHOQOL-Bref (except the 'social relationships' domain), 0.86-0.93 for the SF-36 and 0.88 for the QOLS. None of the instruments showed any marked floor or ceiling effects except the SF-36 'physical health' and 'role limitations' domains. The WHOQOL-Bref scale also had moderate concurrent validity and showed strong "known groups" validity. CONCLUSION: This study has shown good psychometric properties of the WHOQOL-Bref instrument in determining QOL of those with sickle cell disease. Its utility in this regard is comparable to that of the SF-36 and QOLS.Originally published at http://www.biomedcentral.com/content/pdf/1477-7525-7-75.pd

Attributional style and psychological adjustment in male - to - female transexuals Is there a relationship?

SIGLEAvailable from British Library Document Supply Centre-DSC:DXN020876 / BLDSC - British Library Document Supply CentreGBUnited Kingdo

Living with sickle cell disease The intellectual, behavioural and family effects of a childhood disease

SIGLEAvailable from British Library Document Supply Centre- DSC:DX187715 / BLDSC - British Library Document Supply CentreGBUnited Kingdo