Sleep Habits and Fatigue of Children Receiving Maintenance Chemotherapy for ALL and Their Parents

Abstract

The study of potential contributors to fatigue, such as sleep disturbance, has been identified as a research priority in pediatric cancer. The primary objective of this descriptive study was to explore relationships between sleep habits, sleep disturbance, and fatigue for children receiving maintenance chemotherapy for acute lymphoblastic leukemia (ALL). This study also described sleep habits, sleep disturbance, and fatigue of parents of children and adolescents with ALL and determined if relationships existed between parent and child sleep disturbance and fatigue. Using a descriptive, cross-sectional design, children aged 4-18 years receiving maintenance chemotherapy for ALL and their parents completed questionnaires about their sleep and fatigue. Sleep disturbance was common in both children (87%) and parents (48%) and sleep disturbance scores were positively correlated with fatigue scores. From qualitative written responses to open-ended questions, 9 themes emerged related to sleep for children undergoing maintenance chemotherapy for ALL. Sleep differences noted since diagnosis included (1) sleep is disturbed, (2) sleep habits have changed, and (3) sleep is unchanged or improved. Things that got in the way of children sleeping well included (4) side effects of medication, especially dexamethasone; and (5) medication schedules. Things that helped children get sleep at night were (6) sleeping with someone, (7) comforting activities or routine, (8) medications, and (9) food and drink. Sleep disturbance in children on ALL maintenance and their parents is common and likely contributes to increased fatigue and is a potential target for nursing interventions.

Teenage and Young Adult Cancer-Related Fatigue Is Prevalent, Distressing, and Neglected: It Is Time to Intervene. A Systematic Literature Review and Narrative Synthesis

“…Although 13 were of high quality on Weight of Evidence A (integrity of the evidence in its own terms), 17,30,40,[42][43][44][45][46][47][48][49][50][51] only three were judged to be of overall high quality by Weight of Evidence D. 17,30,47 All participants (aside from those in some of the control groups) had a cancer diagnosis. Five studies only recruited patients with lymphoma and/or leukemia, 31,32,45,52,53 and one had only patients with extremity bone tumors. 54 All of the remaining studies investigated more than one cancer type.…”

“…37,53,60,74,75 The FS-A and FS-C 76 each use 14 age-appropriate questions and are validated for 13-18 and 7-12 year olds, respectively. Fatigue was reported as being more severe in adolescents than in younger children in all but one of the eight studies.…”

“…Fatigue was reported as being more severe in adolescents than in younger children in all but one of the eight studies. 53 Many of the studies that used the FS-A outcome also measured parent reports of fatigue, 37,38,47,49,59,60,74,75,77 but patient and parent scores are not directly comparable. One study did directly compare the fatigue scores of TYA patients with proxy scores from their caregivers, and found that their caregivers tended to overestimate their fatigue severity.…”

Sleep of Parents Living With a Child Receiving Hospital-Based Home Care

“…If the child has sleep problems or needs attention at night, the time spent awake by parents and disrupted sleep increase significantly (Mörelius & Hemmingsson, 2014). Sleep loss is a major concern in parents of chronically ill children (Meltzer & Moore, 2008;Mörelius & Hemmingsson, 2014;Zupanec, Jones, & Stremler, 2010). For instance, parents of children with leukemia are affected by changed sleeping habits and disturbed sleep during their children's cancer treatment (Zupanec et al, 2010).…”

“…Sleep loss is a major concern in parents of chronically ill children (Meltzer & Moore, 2008;Mörelius & Hemmingsson, 2014;Zupanec, Jones, & Stremler, 2010). For instance, parents of children with leukemia are affected by changed sleeping habits and disturbed sleep during their children's cancer treatment (Zupanec et al, 2010). Moreover, poor sleep quality, stress, and depressive symptoms influence quality of life for maternal caregivers of young children with bronchopulmonary dysplasia (Feeley et al, 2014).…”