Healthcare injustice in patients with sickle cell disease

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.

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