Getting Help During Active Pain Crises in Sickle Cell Disease: Patient and Caregiver Perspectives in Canada

What is this summary about?
This is a plain language summary of an article originally published in Patient Preference and Adherence. This study aimed to identify the notable symptoms and impacts of sickle cell disease from the point of view of individuals living with sickle cell disease and their caregivers. The study also sought to understand the factors involved in individuals living with sickle cell disease’ and caregivers’ decisions and preferences if and when they seek care during a pain crisis. This summary describes: the symptoms experienced by adolescents and adults living with sickle cell disease and their severity; the treatments they and their caregivers prefer to use when they are experiencing a pain crisis; and the factors that go into deciding when and whether individuals living with sickle cell disease and their caregivers should seek outside help -- to go to a hospital, for example - during a pain crisis.
What were the results?
Individuals living with sickle cell disease undergoing an acute pain crisis and their caregivers consider many factors when deciding whether to seek care at a medical facility. These include:

The intensity of their symptoms
If the facility has a treatment plan for them already in place
If the facility has long wait times
If the facility has an understanding and compassionate staff
The individual's age and ability to manage their daily responsibilities

The intensity of their symptoms
If the facility has a treatment plan for them already in place
If the facility has long wait times
If the facility has an understanding and compassionate staff
The individual's age and ability to manage their daily responsibilities
Racial bias, shown in the actions and lack of empathy of Emergency Department staff toward individuals living with sickle cell disease, frequently factored into the individuals' and caregivers’ decision-making and hinders their ability to get the treatment needed during a pain crisis.
What do the results mean?
There is a need for a unified care team at medical facilities that treats all individuals living with sickle cell disease with the same high level of empathy and treatment quality and for a strong support system for individuals living with sickle cell disease outside of the hospital or clinic.
This is an abstract of the Plain Language Summary of Publication article.
View the full Plain Language Summary PDF of this article to read the full-text
Link to original article here