"You Cannot Cure It, Just Control It": Jamaican Adolescents Living With Diabetes.

Although adolescence is considered a difficult time for diabetes management, there is little published qualitative research on adolescent Jamaicans with diabetes. This study investigates the experiences of Jamaican adolescents living with diabetes to determine how their needs can be addressed. Nineteen adolescents participated in two urban and two rural focus groups and were asked to draw pictures representing their experiences. Thematic analysis was used to analyze their narratives, while their drawings were analyzed using a variation of Lauritsen and Mathiasen's (2003) method. Results show that control was the central theme: children felt controlled by diabetes and the people in their lives. Diabetes restricted their activities and imposed a sense of difference. Support from those around them could be both helpful and constricting. Children tried to resist control through disregarding the rules, being secretive, defiant, and manipulating others into allowing nonadherence. They also tried to adhere to the rules, find a balance between following them and engaging in desired activities, and to be positive. Those most positive about living with diabetes did not feel controlled by diabetes or others' understandings of it and, with loved ones' support, had rejected diabetes' negative meanings. Extreme distress was felt by rural children. All children had been noncompliant. Healthcare practitioners and policymakers should provide education in schools to facilitate fair and effective treatment. Mental health specialists should assist children to negotiate stigma and distress. Group sessions with significant others are important for collaborative decisions on enabling support.

'The white blood cell always eat the red': how Jamaicans with sickle cell disease understand their illness.

OBJECTIVE: To explore lay understandings of sickle cell disease (SCD) among Jamaicans living with the illness. There is no qualitative research on this subject in Jamaica, where SCD is the most common genetic disorder. DESIGN: Thirty in-depth semi-structured interviews (50% males, 50% urban residence) were conducted with adult patients attending the Sickle Cell Unit in Jamaica. Transcribed data were analysed using thematic analysis. RESULTS: Patients' narratives focused on two main themes: lay understandings of how SCD works (using ideas of attack and fortification, and blockage and flow); and what causes the illness (lay ideas of inheritance). The most common description of SCD was that their white blood cells were 'eating/sucking out/feeding on' their red blood cells. Hence, treatment required 'building up' their blood, while a key to good health was ensuring an unimpeded flow of blood. Most participants believed SCD was hereditary, but there were various understandings of the mechanism and probability of its transmission. Belief in the possibility of transmitting SCD was not always a barrier to reproduction, nor did participants always insist on their partner or child being tested. CONCLUSIONS: Participants engaged in medical pluralism, a dynamic combination of folk and biomedical beliefs. Their concerns, experiences and interpretations were powerful motivators of reproductive and screening behaviour. Their narratives of SCD transcend the individual to express social, societal and cultural realities. Health care professionals and policy-makers should communicate clearly to ensure understanding, and recognize and engage with their patients' sociocultural context.

"You just have to live with it": coping with sickle cell disease in Jamaica.

Research has shown that living with sickle cell disease (SCD) can be a considerable challenge. Unfortunately, although it is Jamaica's most common genetic disorder, to date, no qualitative research has been conducted on Jamaicans' experiences of SCD. We conducted thematic analysis on transcripts of in-depth semistructured interviews with 30 patients and found two interlinked themes bound up in life with SCD: loss and control. Faced with important losses, respondents used cognitive and behavioral coping strategies to reestablish control over their response to SCD, others' responses to SCD, and SCD's physical manifestations. Although the adaptive nature of some of these strategies is debatable, many facilitate management of the illness. Health care practitioners should encourage positive coping strategies and have nonjudgmental discussions with patients about (potentially) negative ones. They should also share information with nonspecialist doctors and nurses to reduce stigmatization around the illness. More exploration of this underresearched topic is needed.

"It took a piece of me": initial responses to a positive HIV diagnosis by Caribbean people in the UK.

How do people respond to the news that they are HIV positive? To date, there have been few published qualitative studies of HIV diagnosis experiences, and none focusing on Caribbean people. Twenty-five HIV-positive Caribbean people in London, UK, related their diagnosis experience and its immediate aftermath in semi-structured interviews. Diagnosis with HIV caused profound shock and distress to participants, as they associated the disease with immediate death and stigmatisation. The respondents struggled with "biographical disruption", the radical disjuncture between life before and after diagnosis, which led them into a state of liminality, as they found themselves "betwixt and between" established structural and social identities. Respondents were faced with multifaceted loss: of their known self, their present life, their envisioned future and the partner they had expected to play a role in each of these. A minority of accounts suggest that the way in which healthcare practitioners delivered the diagnosis intensified the participants' distress. This research suggests that healthcare practitioners should educate patients in specific aspects of HIV transmission and treatment, and engage closely with them in order to understand their needs and potential reactions to a positive diagnosis.

Coping with HIV: Caribbean people in the United Kingdom.

Although Caribbean people in the United Kingdom are increasingly being affected by HIV/AIDS, there has been no examination of how they are coping with the illness. We investigate the coping strategies of HIV-positive Caribbean people using in-depth interviews with a purposively selected group of 25 residents of South London. The main coping strategies were more cognitive than behavioral: restricted disclosure, submersion, faith, and positive reappraisal. These strategies were intertwined in complex ways, and most were rooted in contextual factors, particularly cultural ones. Themes of loss, silence, and reinvention suffused respondents' narratives. Interventions should consider the high degree of stigmatization of HIV/AIDS in the Caribbean community, reluctance to disclose, the likelihood of an initial severe reaction to diagnosis, and external stressors. HIV-positive Caribbean people who are coping well could serve as mentors and role models for poor copers and newly diagnosed patients; establishing Caribbean-specific support groups might also assist coping.

Liminal identities: Caribbean men who have sex with men in London, UK.

Accounts by 10 Caribbean men who have sex with men living in the UK reveal them to be liminal beings with unstable and unresolved identities. They are between social states: aware they are not heterosexual and not publicly recognised, or in some cases self-accepted, as homosexual. Caribbean-born respondents especially suffer from homophobia, expressing regret and disappointment at their sexuality. They may also experience cognitive dissonance - as they are aware of their conflict with the heteronormative order - they cannot resolve. Religion contributes to homophobia and cognitive dissonance particularly for Caribbean-born men, some of whom may believe a fundamental conflict exists between Christianity and homosexuality. Heterosexism and homophobia contribute to and reinforce their liminal state, by preventing transition to publicly recognised homosexual status. Respondents may engage in private and public, internal and external, overt and covert policing of their and other gay men's behaviour: through strategic pretence at heterosexuality and/or condemnation of men engaging in behaviour identifiable as stereotypically homosexual, for example. Narratives point to the need to complexify the conventional understanding of Jamaican heterosexism to explain reported variations in the degree of anti-homosexual hostility in the country.

HIV/AIDS-related stigma and discrimination: accounts of HIV-positive Caribbean people in the United Kingdom.

This paper explores the effects of HIV/AIDS-related stigma and discrimination (HASD) on HIV-positive Caribbean people in the Caribbean and the UK. In-depth, semi-structured interviews were held with a purposively selected group of 25 HIV-positive people of Caribbean origin, using primary selection criteria of sex, age, sexuality and country of birth. Interviews with respondents revealed that they are keenly aware of the stigma surrounding HIV/AIDS, which some attribute to a particularly Caribbean combination of fear of contamination, homophobia, and ignorance, reinforced by religious beliefs. In fact, religion serves a double role: underpinning stigma and assisting in coping with HIV. HASD has usually occurred where respondents have lost or do not have control over disclosure. Compared to UK-born respondents, the accounts of Caribbean-born respondents, most of whom were born in Jamaica, include more reports of severe HASD, particularly violence and employment discrimination. All respondents mobilise a variety of strategies in order to avoid HASD, which have implications for their social interactions and emotional well being. While some manage to avoid the "spoiled identity" of the stigmatised, thereby creating their own understandings of HIV infection, these may remain individual-level negotiations. HASD affects HIV-positive Caribbean people at home and in the diaspora in a variety of ways: emotionally, mentally, financially, socially and physically. Interventions specifically addressing stigma and discrimination must be formulated for the UK's Caribbean population. Tackling stigma and discrimination requires more than education; it requires "cultural work" to address deeply entrenched notions of sexuality.