Reflections of Healthcare Experiences of African Americans With Sickle Cell Disease or Cancer: A Qualitative Study

Dyal, Brenda W; Abudawood, Khulud; Schoppee, Tasha M.; Jean, Stacy; Smith, Valandrea M; Greenlee, Amelia; Staton, Lindsey M; Duckworth, Laurie; Mandernach, Molly W.; Black, Vandy; Heldermon, Coy D.; Yao, Yingwei; Wilkie, Diana J.; Ezenwa, Miriam O.

doi:10.1097/ncc.0000000000000750

Cited by 13 publications

(14 citation statements)

References 47 publications

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“…In particular, they expressed concerns that they were not being heard and were often mistreated. These concerns are consistent with the health care experiences expressed among patients with SCD in other studies [ 41 , 42 ]. This reflects that although implementing mHealth in self-management interventions could potentially be effective in increasing communication with the health care providers, there is still a need to improve the SCD patient-provider interactions, particularly in acute settings.…”

Section: Discussionsupporting

confidence: 90%

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

Mayo-Gamble

Quasie-Woode²,

Cunningham-Erves

et al. 2021

JMIR Form Res

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Background Individuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. Objective This study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. Methods Five community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. Results Seven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. Conclusions This study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities.

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Section: Discussionsupporting

confidence: 90%

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

Mayo-Gamble

Quasie-Woode²,

Cunningham-Erves

et al. 2021

JMIR Form Res

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“…42,43 Adult health care (particularly ED) provider biases and negative attitudes have been recognized as major barriers to optimal pain management in SCD. 8,11,44,45 Interestingly, ED providers in our needs assessment indicated that they felt they had the training and resources to manage patients with SCD. However, only a few actually reported knowing about the NHLBI recommendations for the treatment of vasoocclusive pain.…”

Section: Discussionmentioning

confidence: 97%

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

Treadwell¹

2020

JCOM

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ickle cell disease (SCD), an inherited chronic medical condition, affects about 100,000 individuals in the United States, a population that is predominantly African American. 1 These individuals experience multiple serious and life-threatening complications, most frequently recurrent vaso-occlusive pain episodes, 2 and they require interactions with multidisciplinary specialists from childhood. Because of advances in treatments, the majority are reaching adulthood; however, there is a dearth of adult health care providers with the training and expertise to manage their complex medical needs. 3 Other concrete barriers to adequate SCD care include insurance and distance to comprehensive SCD centers. 4,5 Social, behavioral, and emotional factors may also contribute to challenges with SCD management. SCD may limit daily functional abilities and lead to diminished overall quality of life. 6,7 Some adolescents and adults may require high doses of opioids, which contributes to health care

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“…These clinician-based biases negatively impact the quality of pain management, treatment outcomes, healthcare experiences, and patient biopsychosocial-spiritual health, especially among minority populations (Maina et al, 2018; Thames et al, 2019). For instance, Black patients with sickle cell disease (SCD) or cancer reported perceived bias from healthcare providers as reflected by delayed treatment and lack of communication (Dyal et al, 2019). Individuals with SCD were also confronted with accusations of drug-seeking behavior, perceived mistreatment, and feelings of not being heard or believed.…”

Section: Introductionmentioning

confidence: 99%

Bias in Musculoskeletal Pain Management and Bias-Targeted Interventions to Improve Pain Outcomes

Eze

Kumar

Yang

et al. 2022

Orthopaedic Nursing

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Bias in healthcare negatively impacts disparities in care, treatment, and outcomes, especially among minority populations. A scoping review of the literature was performed to provide a deeper understanding of how bias influences musculoskeletal pain and potential effects of bias-targeted interventions on reducing pain disparities, as well as identify gaps and make suggestions for further research in this area. Publications from peer-reviewed journals were searched using the databases PubMed/MEDLINE, PsycINFO, CINAHL, and Scopus, with 18 studies identified. The literature review revealed that clinician-based bias and discrimination worsen pain and disability by reducing access to treatment and increasing patient pain-related injustice, catastrophizing, depression, and perceived stress. In contrast, clinician education and perspective-taking, patient decision tools, and community outreach interventions can help reduce bias and disparities in musculoskeletal pain outcomes. Increasing the diversity of the healthcare workforce should also be a priority. Models of care focused on health equity may provide an ideal framework to reduce bias and provide sustainable improvement in musculoskeletal pain management.

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Reflections of Healthcare Experiences of African Americans With Sickle Cell Disease or Cancer: A Qualitative Study

Cited by 13 publications

References 47 publications

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

Bias in Musculoskeletal Pain Management and Bias-Targeted Interventions to Improve Pain Outcomes

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