“You Just Have to Live With It”

Abstract

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.

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…Exploring the perceptions of Saudi healthcare workers regarding SCD and the subsequent implications may inform understanding and, in turn, improve the management of this disorder in the community. It is proposed that SCD specialist healthcare providers can help patients and decrease the negative aspects of the disease by communicating coping strategies and distributing knowledge on SCD to non-specialist healthcare workers (Anderson & Asnani, 2013). This process would involve non-judgemental engagement with patients and families about practices and behaviours that are not compatible with the biomedical model.…”

“…The impact of stigmatisation and marginalisation on those with SCD is recognised as a feature of their lives in school, in the workplace, and in the healthcare setting (Anderson & Asnani, 2013;Forrester et al, 2015;Jenerette & Brewer, 2010;Jenerette, Funk, & Murdaugh, 2005). More broadly, the experience of stigmatisation is known to be associated with depression, anxiety, and suicidal ideation (Goffman, 1963;Jenerette & Brewer, 2010;Jenerette et al, 2005) and hence the probability that stigma increases the burden on patients with SCD and families (Jenerette & Brewer, 2010).…”

“…(Dyson et al, 2010) because of the connection between pain crises and the regular use of opioid medications (Gupta, Msambichaka, Ballas, & Gupta, 2015;Kotila, Busari, Makanjuola, & Eyelade, 2015). Various labels such as drug seeker (Anderson & Asnani, 2013;Jenerette & Brewer, 2010), manipulators, and malingerers are used by healthcare workers who care for patients with SCD despite the lack of scientific evidence that those people will become drug dependant if their pain is treated with narcotics (Jenerette & Brewer, 2010). Hence, the adverse image was constructed by and communicated from healthcare workers to patients and from patients to healthcare workers.…”

“…In the context of premarital screening, fear of stigma has been found to influence decisions, particularly those of females with SCD, to proceed with at-risk marriage plans (Alswaidi et al, 2012). Fear of stigma also influences treatment, follow up, and testing to identify carrier status and disclosure, more so on the part of females (Amr et al, 2011;Anderson & Asnani, 2013;Treadwell et al, 2006). In the Amr et al (2011) study, females with SCD had a lower health-related quality of life which was associated with the influence of tradition, culture, and gender role.…”

“…The emphasis on the implications of SCD in the following excerpt implies that an attribution of blame or stigma was more likely to be directed towards the women participants; Stigmatisation created negative meanings around the nature of SCD in the research community which, in turn, undermined identity. It may be that individuals with SCD may feel compelled to hide symptoms and, in doing so, become socially withdrawn to avoid discrimination and stigmatisation from others (Anderson & Asnani, 2013). In the words of Bury (2004): …disability is not the resulting limitations caused by chronic illness, impairment or trauma, but the way such matters are responded to and categorised by the wider society.…”