Care Seeking for Pain in Young Adults with Sickle Cell Disease

Abstract

In individuals with sickle cell disease (SCD), recognizing the cues to an acute pain episode and responding appropriately are important. The purpose of this mixed-methods pilot study is to identify preliminary factors that influence care seeking for pain in young adults with SCD. Responses were received from 69 young adults with SCD, age 18-35 years. The majority of respondents (88%) wait until the pain intensity is an average of 8.7 (± 1.2) on a scale of 1 to 10 before seeking care. Prominent themes influencing care seeking for pain include: trying to treat pain at home, avoiding the emergency department because of past treatment experiences, the desire to avoid admission to the hospital, and the importance of time in the lives of the young adults with SCD. Young adults with SCD need additional support from family and healthcare providers in order to make timely, appropriate decisions regarding care seeking.

Attitudes Among Healthcare Providers and Patients Diagnosed With Sickle Cell Disease

“…Pain is a central theme in many of the participant responses and in much of the published research about SCD (Jenerette et al, 2013;Platt et al, 1991;Solomon, 2010). The unpredictability and life-altering nature of how pain is encountered and endured was discussed frequently (Pereira, Brener, Cardoso, & Proietti, 2013).…”

“…Presumptions of drug seeking and addiction were pervasive among healthcare providers and palpable to the participants Jenerette et al, 2013). The research team believed that the issue of race was an unspoken theme in the interviews.…”

“…Periodic vaso-occlusive pain crises are the most common reason for a patient to be hospitalized; however, 62 complications involving 12 basic systems have been identified (Ballas et al, 2010). They include neurologic, renal, liver, and pulmonary complications, along providers report feeling as though patients exaggerate discomfort, fail to comply with medical advice, abuse drugs, or are manipulative (Ratanawongsa et al, 2009); however, many patients with SCD wait until pain is reported at 8 on a 10-point scale before seeking care (Jenerette, Brewer, & Ataga, 2013). Patients who tend to have more hospitalizations and encounter staff disputes often inspire negative attitudes in their healthcare providers (Ratanawongsa et al, 2009).…”

“…Patients who tend to have more hospitalizations and encounter staff disputes often inspire negative attitudes in their healthcare providers (Ratanawongsa et al, 2009). Many patients with SCD loathe being admitted to a hospital, and avoiding hospitalization is a major theme associated with patients seeking care for pain control (Jenerette et al, 2013).…”

Challenges and Resilience in the Lives of Adults with Sickle Cell Disease

“…Useful self-care methods and ways of coping were enumerated, along with death anxiety and fatalism. More recently, Jenerette, Brewer, and Ataga (2014) performed a qualitative study of 69 young adults with SCD, age 18 to 35, regarding pain management, and found that many avoided the ER due to long waiting periods, being perceived as drug seeking, and ER staff lacking knowledge regarding this illness. Another study focused on the fears of adolescents with SCD and their parents regarding transitioning from pediatric services where they received services all of their lives to adult services (Hauser & Dorn, 1999).…”