Ola Bolanle A, Yates Scott J, Dyson Simon M
Department of Behavioural Medicine, Lagos State University College of Medicine (LASUCOM), Ikeja, P.M.B. 21266 Lagos, Nigeria.
School of Applied Social Sciences, De Montfort University, Room 0.19a Hawthorn Building, Leicester LE1 9BH, United Kingdom.
Soc Sci Med. 2016 Jul;161:27-36. doi: 10.1016/j.socscimed.2016.05.029. Epub 2016 May 20.
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 groups people living with SCD were able to challenge negative assumptions about themselves; to begin to recognize collective social interests as a group, and to rehearse backstage, in discussions between themselves, social actions that they might engage in frontstage, out in wider society, to challenge discriminatory societal arrangements they held to contribute to their depression. To the extent that depression in SCD has social origins, then social interventions, such as anti-discrimination laws and policies, are key resources in improving mental health.
镰状细胞病（SCD）和抑郁症都是具有全球意义的慢性疾病。过去关于SCD和抑郁症的研究难以理解统计关联，将抑郁症本质化于患有SCD的个体之中，并将耻辱感视为慢性病的必然关联因素。2012年3月至2014年4月，在尼日利亚拉各斯对患有SCD和抑郁症的人群进行了一项混合方法研究，研究内容包括将抑郁症视为疾病（问卷调查）、将抑郁症视为疾病体验（个体深度访谈）以及将抑郁症视为社会弊病（焦点小组）。103名在门诊就诊的SCD患者接受了患者健康问卷-9的调查，其中82人自我认定有一定程度的抑郁。随后，对15人进行了关于他们疾病体验的访谈。他们的生活特点是广泛遭受恶意歧视性言论，包括来自重要他人的言论，他们认为这些负面经历导致了他们的抑郁，甚至产生了自杀念头和行为。与对耻辱感关系性质的误解相反，受访者认识到耻辱感并非源于他们的SCD，而是源于假定的社会规范和期望的破坏，这些规范与受教育能力、就业能力和为人父母有关。他们讲述了自己要么在生活中成功满足了这些期望，要么认为在社会做出合理调整后可以做到。10名患有SCD和抑郁症的受访者进一步参加了两组焦点小组讨论，每组由五人组成，共进行了两个系列的讨论。在小组中，患有SCD的人能够挑战对自己的负面假设；开始将集体社会利益视为一个群体，并在小组内部讨论中演练他们可能在更广泛社会的前台采取的社会行动，以挑战他们认为导致抑郁的歧视性社会安排。鉴于SCD中的抑郁症具有社会根源，那么社会干预措施，如反歧视法律和政策，是改善心理健康的关键资源。
