Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

Mayo-Gamble, Tilicia; Murry, Velma McBride; Cunningham-Erves, Jennifer; Cronin, Robert M.; Lari, Nabilah; Gorden, Alexis; Scott, Lametra; DeBaun, Michael R.; Thompson, Trevor

doi:10.1353/hpu.2020.0027

Cited by 4 publications

(3 citation statements)

References 45 publications

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“…Community health ambassador (CHA) interventions, which leverage indigenous helping networks to distribute resources within communities, are a promising intervention model for lowering barriers to equitable care and resource access among transgender women living with HIV [ 9 , 10 ]. CHA intervention models have been widely implemented and successful in promoting diabetes prevention, tobacco cessation, and several other high-priority health issues among medically underserved groups [ 9 – 11 ]. Natural helpers, who typically are a well-known source of information and advice within the community of interest are recruited, educated, and trained to disseminate health information and resources throughout community networks.…”

Section: Introductionmentioning

confidence: 99%

The Helping Networks of Transgender Women Living with HIV

et al. 2023

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Transgender women living with HIV face significant barriers to healthcare that may be best addressed through community-centered interventions holistically focused on their HIV-related, gender-related, and other important needs. Community health ambassador (CHA) interventions (education and training programs designed to engage communities and community leaders in health promotion) may be an effective option, though information about the natural helping networks of this vulnerable population is too limited to inform the implementation of this approach. This study uses social network analysis to describe the natural helping networks of transgender women living with HIV, their help-seeking patterns for HIV-related, gender-related, and ancillary resources, and the characteristics of potential network ambassadors. From February to August 2019, transgender women living with HIV in the US (N = 231) participated a 30-min online survey asking them to describe their natural helping networks (N = 1054). On average, participants were embedded within natural helping networks consisting of 4–5 people. They were more likely to seek help from informal network members vs. formal service providers (p < .01), and from chosen family and partners/spouses (p < .05) above other social connections. Older network members (p < .01), other transgender women (p < .05), and those with whom they regularly engaged face-to-face (p < .01) (vs. social technology) were identified as potential network ambassadors for HIV-, gender-related, and other important issues. These findings suggest an opportunity to develop CHA interventions that leverage existing help networks and potential network ambassadors to promote equitable access to HIV, gender-affirming, and other crucial resources among this medically underserved group.

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Section: Introductionmentioning

confidence: 99%

The Helping Networks of Transgender Women Living with HIV

et al. 2023

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“…Members of the research team were PhD-level researchers with a qualitative research experience. In addition to receiving training in SCD management, the community listening session facilitators were trained in qualitative research as part of a larger patient engagement project [ 33 ]. Another aspect of the training included a 2-hour session on practical group engagement, which consisted of dyadic role playing, where the facilitators engaged in reflective techniques to encourage group discussion and establish group cohesion.…”

Section: Methodsmentioning

confidence: 99%

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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“…Men can actively participate in patient-centered research initiatives that prioritize the needs and perspectives of individuals living with sickle cell anemia. These efforts often lead to the development of more patient-friendly treatments, a better understanding of the disease's impact on daily life, and improved strategies for care and management [50]. The importance of research in the management of sickle cell anemia cannot be overstated.…”

Section: The Importance Of Research and Men's Involvement In The Mana...mentioning

confidence: 99%

Men's Essential roles in the Management of Sickle Cell Anemia

Obeagu,

Igwe

et al. 2023

NIJSES

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Sickle cell anemia (SCA) is a hereditary blood disorder characterized by the presence of abnormal hemoglobin, leading to the deformation of red blood cells and subsequent health complications. While much research has focused on the clinical aspects of SCA, this paper aims to shed light on the crucial and multifaceted roles that men play in the comprehensive management of this condition. Men, as integral members of families and communities, contribute significantly to the support systems necessary for effective SCA management. From a biological standpoint, understanding the genetic inheritance of SCA requires an exploration of paternal contributions. Moreover, men are often primary decision-makers in families, influencing choices related to healthcare, treatment modalities, and lifestyle adjustments. This paper discusses the importance of men's active involvement in genetic counseling, family planning, and fostering a supportive environment for individuals living with SCA. Psychosocially, men play essential roles as emotional anchors and caregivers, providing crucial support to family members coping with the challenges of SCA. This study explores the impact of male involvement on the mental well-being of both patients and their caregivers. Additionally, it investigates the role of men in community awareness programs, challenging stigmas associated with SCA and promoting a more inclusive and understanding society. Economically, the burden of managing SCA can be substantial. Men often serve as primary earners, and their financial contributions are pivotal in ensuring access to quality healthcare, medications, and educational resources for individuals with SCA. In NEWPORT INTERNATIONAL JOURNAL OF SCIENTIFIC AND EXPERIMENTAL SCIENCES (NIJSES) Volume 4 Issue 2 2023 ©NIJSES Publications Open Access ONLINE ISSN: 2992-5819 PRINT ISSN: 2992-6149 Obeagu et al., 2023 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited Page | 21 conclusion, this comprehensive perspective highlights the indispensable roles that men play in the management of sickle cell anemia. Recognizing and harnessing these contributions can lead to more effective strategies for addressing the complex challenges associated with SCA, fostering holistic well-being for individuals, families, and communities affected by this genetic disorder.

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Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

Cited by 4 publications

References 45 publications

The Helping Networks of Transgender Women Living with HIV

The Helping Networks of Transgender Women Living with HIV

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

Men's Essential roles in the Management of Sickle Cell Anemia

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