33 Patients’ and caregivers’ experiences with pain management in children and teenagers with sickle cell disease requiring admission for vaso-occlusive crisis

Abstract

Background The quality of life of children with sickle cell disease (SCD) depends on the severity, timing and number of painful episodes (vaso-occlusive crises, VOC) and their need for medical treatment and hospitalizations. Objectives The objective of this study was to explore the experiences of pediatric patients and their families during VOC. Design/Methods This qualitative study used semi-structured one-on-one and focus group interviews, designed in partnership with two patients and one parent, in a single center, tertiary care pediatric university-affiliated hospital. Two groups of participants were interviewed independently: (1) adolescent patients aged 12 to 18 years old hospitalised within the last 2 years for VOC, (2) parents of pediatric patients with SCD hospitalised within the last 2 years for VOC. Data was transcribed in full and analysed using NVivo12. Descriptive thematic content analysis was performed by coding themes emerging from data. After validating codes through interjudge assessment by consensus, themes from teenagers' and parent's discourses were systematically compared for the final analysis. Results Between June and August 2018, eight interviews were conducted; half of them were focus groups of two to three participants, half were individual interviews. Ten parents and five adolescents (aged 14 to 16) participated. Teenagers' and parents' answers mirrored each other's. Prompt, adequate pain relief was crucial for all, although the side effects of pain relief medications used were an added source of suffering. Recent quality improvement initiatives such as standardised order sheets in the emergency department were noteworthy improvements to achieve timely pain relief, though personalizing care to each patient's responses to pharmacological and non-pharmacological pain relief was also important to participants. Given the unpredictability and severity of VOC, their impact on both patients' and families' lives were substantial (school, work, other children/siblings), as was the long term emotional burden of the painful illness. Parents felt guilty given the hereditary nature of the disease, they encouraged neonatal and prenatal testing, that allowed for informed reproductive choices, and they sought definitive treatments for both VOC and SCD. Tensions within parent-teenager relationships were described centered on developing autonomy – particularly in the context of upcoming transitions to adult medicine – and protecting the child to improve adherence to treatments. Conclusion Participants emphasized the need to provide timely adequate analgesia, through both standardised quality improvement initiatives and a personalised approach to analgesia. Understanding the impact of VOC on patients' lives and their socio-familial context is important to tailor clinical interventions.