Date of Award


Document Type


Degree Name

Doctor of Philosophy (PhD)



Research Advisor

Pamela S. Hinds RN, Ph.D.


Mona Wicks, RN, Ph.D Judy Martin, RN, Ph.D. Deo Kumar Srivastava, Ph.D. David Van Brunt, Ph.D.


Sleep, Caregiver Burden, Fatigue, ALL, Acute Lymphoblastic Leukemia


Parents often report that their child diagnosed with acute lymphoblastic leukemia (ALL) and receiving steroid therapy experience altered sleep patterns, fatigue, irritability, and other behavioral changes. As a consequence, parents may experience altered sleep, fatigue, and increased caregiver burden. If so, the differences seen in parental sleep efficiency and sleep duration may be attributed to the child experiencing altered sleep secondary to receiving dexamethasone. The purpose of this study was to describe, caregiver sleep, fatigue, and caregiver burden immediately before and during their child’s dexamethasone pulse in continuation therapy for ALL and to compare parent quality of sleep and fatigue with their child’s sleep. This descriptive comparative study is a companion study to the Sleep, Fatigue, and Dexamethasone in Childhood ALL protocol (SLEEP) and the St Jude Children’s Research Hospital Total XV protocol for children with ALL. Research participants were parent(s) or guardian(s) of children enrolled on Total XV (in the treatment phase of continuation) and enrolled on SLEEP. Both mothers and fathers were eligible to participate. Research participants were asked to complete a demographic sheet, a fatigue measure, and caregiver burden instruments. Research participants were also asked to keep a sleep diary and to wear a wrist actigraph to measure sleep quality. Parent sleep quality, level of fatigue, and caregiver burden were measured and compared during two consecutive 5-day periods, (the first when their child was off dexamethasone and the second 5-day period when the child was on dexamethasone). Fatigue and caregiver burden of the participants were compared between the two time periods. Sleep quality of the parents was compared between the two time periods and compared with the sleep quality of their ill child during the same consecutive 5-day periods.
Data were analyzed using descriptive statistics, one sample t-test, and mixed effects models. The sample consisted of twenty-two parents, of which 77.3% were primary caregivers (15 mothers and 2 fathers). The majority of primary caregivers were white, female, and homemakers at the time of the study. Their average age was 38 years (SD=6). These caregivers had higher sleep efficiency and sleep duration, measured by actigraphy, when their child was on dexamethasone compared to when their child was off dexamethasone. Primary caregivers had a significantly lower actual sleep time and sleep duration compared to child’s actual sleep time and sleep duration. Actual sleep time for parent caregivers and their children were significantly higher when on dexamethasone (p=.002)
Primary caregivers reported low fatigue scores. However, higher fatigue scores were reported when the children were on dexamethasone as compared to when the children were off dexamethasone. Subjective burden scores for parents were significantly higher in week 2 (on dexamethasone) than in week 1 (off dexamethasone (p=0.05). Average scores for objective burden were slightly higher during week 2 as compared to week 1. Further research is needed to explore differences in caregiver burden and fatigue by parent sex, marital status, ethnicity, and child’s phase of treatment.