Saudi in vaso-occlusive crisis accessing healthcare for pain management: A qualitative study

Background

Adults with sickle cell disease often experience vaso-occlusive crises, leading to frequent healthcare visits and increased disparities in care. The pain management experiences of sickle cell disease patients are underexplored, especially in Saudi Arabia, contributing to prolonged suffering.

Objective

To explore the lived experiences of Saudi Arabian adults with sickle cell disease when accessing healthcare for vaso-occlusive crisis pain management.

Design

A qualitative study using semi-structured interviews.

Setting(s)

The study was conducted in Riyadh, Saudi Arabia, between November and December 2021.

Participants

12 adults with sickle cell disease were recruited through purposeful and snowball sampling.

Methods

Data were analyzed using Moustakas's transcendental phenomenology, focusing on the lived experiences of participants.

Results

Four themes emerged: (a) enduring suffering, (b) crying out for understanding, (c) paradoxes in healthcare access, and (d) longing beyond suffering. Participants expressed deep pain and frustration, desiring better recognition of their pain and more compassionate, informed care. They reported that healthcare interactions often felt inadequate, with long waits and insufficient treatment, leading to feelings of isolation and distress. Acknowledging their suffering and providing empathetic, well-informed care could alleviate these issues and help them move beyond their pain toward hope and better quality of life.