Healthcare injustice in patients with sickle cell disease
International Journal of Human Rights in Healthcare
ISSN: 2056-4902
Article publication date: 6 June 2016
Abstract
Purpose
The purpose of this paper is to detail experiences that sickle cell disease (SCD) patients associate with healthcare justice and injustice in pain control.
Design/methodology/approach
A content analysis study of open-ended comments written by 31 participants who completed a 20-item healthcare injustice questionnaire-revised twice: once in reference to experiences with doctors and once in reference to experiences with nurses.
Findings
Participants’ mean age was 33±10 years; most were African-Americans and women. Themes showed: the four domains of healthcare justice were represented in patients’ comments; examples of justice and injustice were provided; specific incidents and interactions with healthcare providers were memorable to patients; and setting was a factor important to healthcare experiences because expectations about services vary by setting.
Research limitations/implications
Patients were self-selected. Future work will include qualitative interviews and focus groups to uncover more details about how patients experience healthcare injustice.
Practical implications
Additional training is needed for SCD providers and about proper management of sickle cell pain; educational modules are also needed that address areas of healthcare injustice by patients.
Originality/value
The authors are the first to report how patients define healthcare justice and injustice. Specific details about memorable SCD patient-provider interactions and pain control are described.
Keywords
Acknowledgements
This publication was made possible by Grant Numbers 1R01 HL078536 and 1U54 HL090513 (Scholars Program) from the National Institutes of Health, National Heart Lung and Blood Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Heart Lung and Blood Institute. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy.
Citation
Ezenwa, M.O., Patil, C., Shi, K. and Molokie, R.E. (2016), "Healthcare injustice in patients with sickle cell disease", International Journal of Human Rights in Healthcare, Vol. 9 No. 2, pp. 109-119. https://doi.org/10.1108/IJHRH-07-2014-0015
Publisher
:Emerald Group Publishing Limited
Copyright © 2016, Emerald Group Publishing Limited