OLA et al_SSM_2016_Green Open Access (1).doc

OLA et al_SSM_2016_Green Open Access (1).doc - This is the...

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This is the accepted version of a paper submitted to Social Science and Medicine [ISSN 0277-9536]. To cite the paper: Ola, BA; Yates, SJ and Dyson, SM (2016) Living with Sickle Cell Disease and Depression in Lagos, Nigeria: A Mixed Methods Study Social Science and Medicine doi: This manuscript version is made available under the CC-BY-NC-ND Creative Commons 4.0 license - nc-nd/4.0/ Embargoed until May 18 th 2017 1
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Authors Bolanle A. OLA a Scott J. YATES b Simon M. DYSON c Affiliations a Department of Behavioural Medicine Lagos State University College of Medicine (LASUCOM) P.M.B. 21266, Ikeja, Lagos, Nigeria [email protected] b School of Applied Social Sciences Room 0.19a Hawthorn Building De Montfort University Leicester LE1 9BH United Kingdom [email protected] c Unit for the Social Study of Thalassaemia and Sickle Cell Room 1.27 Hawthorn Building De Montfort University Leicester LE1 9BH United Kingdom [email protected] Corresponding Author: Simon M DYSON Unit for the Social Study of Thalassaemia and Sickle Cell Room 1.27 Hawthorn Building De Montfort University Leicester LE1 9BH United Kingdom [email protected] Tel: +44 (0)116 257 7751 Fax: +44(0)116 257 7773 Acknowledgments We would like to thank all the research participants for their contributions to the study. Bola Ola acknowledges a De Montfort University PhD scholarship that enabled this research to be undertaken 2
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Living with Sickle Cell Disease and Depression in Lagos, Nigeria: A Mixed Methods Study Abstract Sickle cell disorders (SCD) and depression are both chronic illnesses of global significance. Past research on SCD and depression struggles to make sense of statistical associations, essentializes depression within the person with SCD, and treats stigma as an automatic correlate of chronic illness. A mixed methods study (March 2012 - April 2014) was undertaken with people living with SCD and depression in Lagos, Nigeria, examining depression-as disease (questionnaires); depression-as-illness-experience (individual depth interviews), and depression-as-societal-sickness (focus groups). 103 people with SCD attending an outpatients clinic were administered the Patient Health Questionnaire-9 , and 82 self-identified with some level of depression. Fifteen were subsequently interviewed about their illness experience. Their lives were characterized by being extensively subjected to vicious discriminatory remarks, including from significant others, negative experiences they felt contributed to their depression and even to suicidal thoughts and actions. Contrary to misconceptions of the relational nature of stigma, respondents recognized that stigma resulted not from their SCD but from assumed broken social norms and expectations, norms to do with educability, employability and parenthood. They recounted either that they successfully met such expectations in their own lives, or that they could conceivably do so with reasonable societal adjustments. Ten respondents with SCD and depression further took part in two series of three focus groups with five people in each series of groups. In
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