Perceptions of young adults with sickle cell disease concerning their disease experience

Matthie, Nadine; Hamilton, Jill B.; Wells, Diana L.; Jenerette, Coretta

doi:10.1111/jan.12760

Cited by 35 publications

(57 citation statements)

References 43 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Category 1 tasks made up a large portion of the instances of patient work tasks identified in the included studies, with the most prevalent tasks being planning [ 18 , 20 , 40 , 44 - 57 ] and proactive management of risks [ 20 , 40 - 42 , 45 - 47 , 49 , 50 , 52 , 57 - 78 ]. Tasks in category 1 are characterized by their pervasiveness and volume.…”

Section: Resultsmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review

et al. 2020

View full text Add to dashboard Cite

Background Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. Objective This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. Methods A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health–related tasks, (2) cognitive health–related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). Results In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. Conclusions This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one’s internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.

show abstract

Section: Resultsmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review

et al. 2020

View full text Add to dashboard Cite

show abstract

“…We used purposive sampling of individuals and families affected by SCD, health professionals, and community opinion leaders including traditional leaders, marriage counselors, and religious leaders. Our goal was to ensure that participants were knowledgeable informants (Matthie et al ; Matua and Wal ) and reflected a range of characteristics of individuals potentially impacted by genomic research and public health interventions (Tuckett ). This publication is focused only on the Ghana arm of the larger study.…”

Section: Methodsmentioning

confidence: 99%

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

Dennis-Antwi

Ohene‐Frempong²,

Anie

et al. 2018

Journal of Genetic Counseling

View full text Add to dashboard Cite

Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.

show abstract

“…SCD, sickle cell disease; SCT, sickle cell trait. (Matthie et al, 2015;Matua and Wal, 2015) and to capture the heterogeneity of the population potentially impacted by genomic research and SCD public health interventions (Tuckett, 2004).…”

Section: Sampling Methodsmentioning

confidence: 99%

Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study

TreadwellMarsha¹,

Makani²,

Ohene-FrempongKwaku³

et al. 2017

OMICS: A Journal of Integrative Biology

View full text Add to dashboard Cite

Advances in omics technologies alone are not a guarantee that science will translate to robust responsible innovation that is firmly grounded in societal values. This study aimed to identify best practices for Ethical, Legal, and Social Implications (ELSI) research in Africa that allows for optimal integration of community perspectives into the design and implementation of genomics research. In a large sample of 346 stakeholders in Cameroon, Ghana, and Tanzania (59% women), we used a qualitative study design with a phenomenological approach and conducted 32 group and 74 individual interviews (25% rural). We imported interview recordings into NVivo software for analysis. We created a “concept map” to organize the coded information, with Perspectives on Genomics and Sickle Cell Disease (SCD) Public Health Interventions as the central themes. We found that (1) analyses of major subthemes across and within countries revealed differential knowledge and experiences of SCD, and perspectives on various aspects of research and genomics; (2) we were able to gather empirical data efficiently from urban and rural stakeholders, to study the issues related to sample sharing, consent processes, and return of clinical and genomic study results; (3) the concept of nondirectiveness in modern genetic medicine practice can be challenged by the views of stakeholders in the context of a high-burden disease such as SCD; and (4) linking community views to current and proposed public health interventions could be understood within the context of each specific country. Our work informs future qualitative social science and technology policy research designs on genomics applications in Africa

show abstract

Perceptions of young adults with sickle cell disease concerning their disease experience

Cited by 35 publications

References 43 publications

Patient Work and Their Contexts: Scoping Review

Patient Work and Their Contexts: Scoping Review

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study

Contact Info

Product

Resources

About