Stigma and illness uncertainty: adding to the burden of sickle cell disease

Blake, Alphanso; Asnani, Vikram; Leger, Robin R.; Harris, June; Odesina, Victoria; Hemmings, Daileann L.; Morris, Denise A.; Knight‐Madden, Jennifer; Wagner, Linda D.; Asnani, Monika

doi:10.1080/10245332.2017.1359898

Cited by 23 publications

(41 citation statements)

References 62 publications

(75 reference statements)

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“…Of the 27 studies reviewed, five used scales adapted for stigma of SCD (Bediako et al, 2014; Blake et al, 2017; Holloway, McGill, & Bediako, 2016; Jenerette, Brewer, Crandell, & I. Ataga, 2012; Jenerette, Brewer, Edwards, Mishel, & Gil, 2014). The remainder did not include a scale, adapted a scale about stigma or a stigma-related concept fromanother population, or interviewed participants about stigma and stigma-related concepts.…”

Section: Resultsmentioning

confidence: 99%

“…The remainder did not include a scale, adapted a scale about stigma or a stigma-related concept fromanother population, or interviewed participants about stigma and stigma-related concepts. Blake et al (2017) utilized a SCD stigma scale that has not yet been published and the other 4 studies utilized either the Measure of Sickle Cell Stigma or the SCD Health-Related Stigma Scale.…”

Section: Resultsmentioning

confidence: 99%

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Stigma of Sickle Cell Disease: A Systematic Review

Bulgin

Tanabe

Jenerette

2018

Issues in Mental Health Nursing

102

114

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The aim of this systematic review was to synthesize the literature regarding health-related stigma in adolescents and adults living with sickle cell disease (SCD). Four domains were identified from 27 studies: 1) social consequences of stigma, 2) the effect of stigma on psychological well-being, 3) the effect of stigma on physiological well-being, and 4) the impact of stigma on patient-provider relationships and care-seeking behaviors. Current literature revealed that SCD stigma has detrimental consequences. Methodological issues as well as research and practice implications were identified. Future research should further examine the impact of health-related stigma on self-management of SCD.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Stigma of Sickle Cell Disease: A Systematic Review

Bulgin

Tanabe

Jenerette

2018

Issues in Mental Health Nursing

102

114

View full text Add to dashboard Cite

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“…Our study suggests that experiences of uncertainty about care during the transition period add additional stress to what is already a very uncertain illness experience [14]. Sickle cell pain episodes are unpredictable, and may lead to complications and rapid deterioration.…”

Section: Discussionmentioning

confidence: 99%

“…Sickle cell pain episodes are unpredictable, and may lead to complications and rapid deterioration. This makes it difficult for people with sickle cell to make plans [14]. Resorting to self-management of painful episodes, and delaying hospital care, may help young people feel that they can exert some control in this otherwise very uncertain landscape, because they do so despite knowing that delay to and avoidance of hospital treatment carries risks to their health.…”

Section: Discussionmentioning

confidence: 99%

“…A defining characteristic of the experience of living with SCD is the uncertainty in everyday life caused by the unpredictability of the condition, including the ever-present threat of painful episodes and complications [14]. This means the period of transition to adult care – a period of increased vulnerability for children and young people with any chronic condition [15] – is likely to be particularly complex for those with SCD.…”

Section: Introductionmentioning

confidence: 99%

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Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Renedo

Miles

Chakravorty

et al. 2019

BMC Health Serv Res

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BackgroundYoung people’s experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016–2017 with young people with SCD aged 13–21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2–3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people’s voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.

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Social support networks of adults with sickle cell disease

Desine

Eskin

Bonham

et al. 2021

Journal of Genetic Counseling

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Sickle cell disease (SCD) can cause both physical and psychological complications, such as severe pain and depression. These effects often necessitate social and caregiving support. Few studies have assessed support networks within the adult SCD population. Here, we describe the support networks of adults with SCD and identify who in these networks (1) provides emotional support, ( 2) is dependable during crisis situations, including social and financial adversities, and (3) provides assistance in health crises. Forty-nine adults with SCD completed surveys and social network assessments through interview. Generalized mixed-effects linear regression models were fitted to investigate the composition of support provision within these personal networks. Our findings indicate that parents and 'other important people' (e.g., friends, spouses) play key roles in the support provided to those with SCD. Siblings with SCD appeared to be more emotionally supportive than unaffected siblings. With much research centered around the pediatric and adolescent SCD populations, focus needs to extend to adults and the individuals involved in their care and disease management. Understanding the flow of support within these networks can help genetic counselors and healthcare providers to better identify both social ties that serve as support resources and less supportive relationships for individuals living with SCD and other chronic genetic conditions that might be targeted for intervention.

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Stigma and illness uncertainty: adding to the burden of sickle cell disease

Abstract: The study highlights socioeconomic factors to be significant to the stigma and illness uncertainty experiences in SCD. Efforts by healthcare workers to reduce patient illness uncertainty may have additional impact, reducing their stigma.

Cited by 23 publications

References 62 publications

Stigma of Sickle Cell Disease: A Systematic Review

Stigma of Sickle Cell Disease: A Systematic Review

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Social support networks of adults with sickle cell disease

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