Chronic pain in adults with sickle cell disease: a lived experience study

Adegbola, Maxine A.

doi:10.1016/j.jpain.2012.01.109

Cited by 4 publications

(7 citation statements)

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“…11 Pain variability may be relevant in SCD as it may contribute to loss of control, a theme that has been encountered in SCD, and is related to the unremitting and unpredictable course of painful episodes 39 and the unpredictability of SCD pain. 1…”

Section: Introductionmentioning

confidence: 99%

Intraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study

Bakshi

Gillespie

McClish

et al. 2021

Pain

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Section: Introductionmentioning

confidence: 99%

Intraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study

Bakshi

Gillespie

McClish

et al. 2021

Pain

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“…Patients with SCD often express a fear of rejection when disclosing their SCD status and desire understanding and support from their peers. Symptoms of SCD impede engagement in social activities, employment, and school, and concerns regarding their peers’ perceptions may discourage individuals with SCD from establishing relationships or seeking support [ 32 - 34 ]. Both adolescents and adults recognize the importance of all forms of social support in their lives; however, social support from other individuals with SCD plays a unique role, because these connections provide the opportunity to empathize with each other’s experiences and share strategies and skills for coping with SCD.…”

Section: Discussionmentioning

confidence: 99%

Tailoring a Digital Mental Health Program for Patients With Sickle Cell Disease: Qualitative Study

Nikolajski¹,

O'Brien²,

Nardo³

et al. 2023

JMIR Ment Health

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Background Depression and other mental health disorders are prevalent among people living with chronic health conditions. Although digital cognitive behavioral therapy (CBT) is considered an effective treatment, African American individuals are less likely to engage in and adhere to digital therapies for mental health disorders compared with White individuals. Objective The aim of this study was to understand digital CBT mental health treatment perceptions and preferences of African American individuals with sickle cell disease (SCD). Methods African American individuals with SCD from various US locations were invited to participate in a series of focus groups. Participants were introduced to a health coach–supported mental health app and then asked a series of questions about the usability and appeal of the program as well as, more generally, what would make a digital mental health program effective for them. The authors reviewed the focus group transcripts and conducted a qualitative analysis of the results. Results A total of 25 people participated in 5 focus groups. Overall, 5 primary themes emerged regarding how app content and related coaching could be modified to enhance digital CBT engagement. These themes included connection with others living with SCD, the personalization of app content and coaching, characteristics of coaches, journaling and pain tracking, and considerations for optimal engagement. Conclusions Enhancing the user experience by making digital CBT tools relevant to patient populations is critical for optimizing program engagement and its uptake. Our findings highlight potential strategies to modify and design digital CBT tools for users with SCD and may also be applicable to patients with other chronic conditions. Trial Registration ClinicalTrials.gov NCT04587661; https://clinicaltrials.gov/ct2/show/NCT04587661

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“…Disease-related stigma acts directly to impact health outcomes by preventing stigmatized individuals from accessing necessary resources. For example, health care providers who are mistrustful of patients with SCD may not provide adequate treatment to control pain and other SCD-related symptoms (Adegbola et al, 2012; Bulgin et al, 2018), and SCD patients who experience stigmatization are less likely to go to an emergency department during an uncontrolled pain crisis (Adegbola et al, 2012).…”

Section: Discussionmentioning

confidence: 99%

“…Total scores range from 9 to 45, and higher scores indicate higher levels of SCD self-efficacy. The SCSES is an appropriate disease-specific measure that has demonstrated good validity and reliability across studies (Adegbola, 2015; Clay & Telfair, 2007; Edwards et al, 2000; Jenerette & Murdaugh, 2008). In the study sample, the internal consistency reliability of the SCSES was very good (α = .87).…”

Section: Methodsmentioning

confidence: 99%

“…Prior studies have found that with few exceptions, higher self-efficacy is associated with better health outcomes in patients with SCD (Molter & Abrahamson, 2015). Increased self-efficacy has been associated with increased perceived self-care ability and self-care actions (Matthie et al, 2015), decreased pain (Adegbola, 2015; Edwards et al, 2000), decreased physical and psychological symptoms (Clay & Telfair, 2007; Edwards et al, 2000), higher quality of life (Adegbola, 2011), and higher sleep quality (Adegbola, 2015). While the importance of self-efficacy has been established, how self-efficacy interacts with SDOH to jointly influence health outcomes is not as well understood.…”

Section: Relationships Among Social Determinants Of Health and Self-e...mentioning

confidence: 99%

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Health Literacy, Perceived Stigma, Self-Efficacy, and HRQOL in Sickle Cell Disease

et al. 2022

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Little is known about the relationships among self-efficacy, social determinants of health, and health outcomes in adults living with sickle cell disease (SCD). We conducted mediation analyses examining the relationships among health literacy, perceived stigma, self-efficacy, and health outcomes in an online cohort of adults living with SCD. The health outcomes explored were physical and mental health-related quality of life (HRQOL) and pain interference; covariates included gender, disease severity, and depressive symptoms. Data came from a cross-sectional, descriptive study of 60 adults with SCD. Perceived stigma and self-efficacy had significant relationships with the study outcomes, while health literacy did not. Self-efficacy partially mediated the relationship between perceived stigma and physical HRQOL, when controlling for depressive symptoms. Future research should investigate the influence of stigma and self-efficacy on health outcomes in patients with SCD and consider stigma when creating interventions to modify self-efficacy.

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Chronic pain in adults with sickle cell disease: a lived experience study

Cited by 4 publications

References 0 publications

Intraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study

Intraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study

Tailoring a Digital Mental Health Program for Patients With Sickle Cell Disease: Qualitative Study

Health Literacy, Perceived Stigma, Self-Efficacy, and HRQOL in Sickle Cell Disease

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