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Purpose/Objectives: To compare the sleep of children with acute lymphoblastic leukemia (ALL) during maintenance treatment with controls and to measure the effect on maternal sleep.
Design: Comparative, descriptive.
Setting: Pediatric oncology clinic and communities in Colorado.
Sample: 26 dyads of mothers and children with ALL and matched controls....
Context in source publication
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Introduction:
Community pharmacists are in a suitable position to give advice and provide appropriate services related to sleep disorders to individuals who are unable to easily access sleep clinics. An intervention with proper objective measure can be used by the pharmacist to assist in consultation.
Objectives:
The study objectives are to eval...
While actigraphy is considered objective, the process of setting rest intervals to calculate sleep variables is subjective. We sought to evaluate the reproducibility of actigraphy-derived measures of sleep using a standardized algorithm for setting rest intervals.
Observational study.
Community-based.
A random sample of 50 adults aged 18-64 years f...
Citations
... Only three studies were longitudinal (Barrera et al., 2012;Magni et al., 1983Magni et al., , 1988, with the last one published in 2012; the majority (25) were cross-sectional. The sample size across the studies ranged from 25 (Magni et al., 1983) to 213 (Huang et al., 2018) participants, with three studies exclusively with mothers (Bhattacharya et al., 2016;Khazaeli et al., 2021;Matthews et al., 2014). Of the 25 studies that include mothers and fathers, 19 included more mothers, four included the same number of mothers and fathers (Burns et al., 2018;Magni et al., 1986;Sharan et al., 1995Sharan et al., , 1999, and two did not report the sample by gender (Rao et al., 1992;Sherief et al., 2015). ...
... According to the longitudinal studies, two were related to the first year of treatment (Magni et al., 1983(Magni et al., , 1988, and one was conducted from the pre-stem cell transplantation (SCT) to 2 years post-SCT (Barrera et al., 2012). In the cross-sectional studies, two were related to the diagnostic phase (Magni et al., 1986;Ruccione et al., 1991), six were related to the initial/intermediate phases of treatment (i.e., the first year of treatment) (Iqbal & Siddiqui, 2002;Khazaeli et al., 2021;Sharan et al., 1995Sharan et al., , 1999Sint Nicolaas et al., 2016;Wang et al., 2017), and four were related to a later phase-maintenance (Daniel et al., 2018;Matthews et al., 2014;Rensen et al., 2020;Sherief et al., 2015). Two studies were related to any stage of active treatment (Irwanto et al., 2020;Jankowska-Polańska et al., 2020), and one was conducted from the initial treatment phases until maintenance . ...
... Daniel et al. (2018) reported that, during the maintenance phase, parent stress was associated with worse parents' sleep quality. Similarly, Matthews et al. (2014) found that perceived stress, anxiety, and depression symptoms were positively associated with insomnia severity in mothers and perceived stress with the number of maternal awakenings. Five studies explored health consequences (i.e., sleep and QoL) of parental distress in children. ...
The present study is a systematic review of factors and consequences of parental distress following their children’s acute lymphoblastic leukemia (ALL) diagnosis. PubMed, Web of Science, and APA PsycInfo databases were searched. Twenty-eight papers were included, with only three longitudinal studies. Fifteen studies explored factors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Correlations were found between social support, illness cognitions, coping strategies, and parental distress, as well as contradictory results regarding sociodemographic variables. Family cohesion and the overall impact of illness were associated with parental distress. Resilience factors contributed negatively to parental distress symptoms, and perceived caregiver strain and negative child’s emotional functioning contributed positively. Thirteen papers explored the consequences of parental distress, including psychological, family, health, and social/education factors. Distress was correlated with care burden and contributed to family strain, child’s symptom burden, and parental protective behavior. Significant correlations were found between parental distress, at diagnosis, and further adjustment of parents and children. Most papers reported correlations between parental distress and psychological condition and quality of life; few studies reported no association. Correlations between maternal depression and child’s participation in education and social life were found. Differences on distress were found regarding parents’ gender, age, children’s group risk, and treatment phases. Longitudinal studies are needed to better understand the phenomenon and its consequences. Future interventions should address parents’ mental health needs in an early and ongoing assessment in order to promote healthier outcomes.
... Actigraphy measurement of children in the maintenance phase of outpatient treatment for ALL 3 weeks after a 5-day steroid pulse shows that their sleep efficiency is lower than the level considered acceptable for children (Hinds et al., 2007). In children receiving maintenance therapy for ALL, actigraphy measurements performed during the 2 weeks following the steroid pulse showed increased sleep latency and variable sleep patterns (Matthews et al., 2014). In a study also using actigraphy, a cohort of 36 children with cancer showed impaired sleep based on healthy normative data; sleep quality was improved when children were more active (Orsey et al., 2013). ...
Background: Symptoms in children with acute lymphocytic leukemia (ALL) change over the trajectory of treatment but little is known about their symptoms as treatment ends. Physical activity may help decrease symptom distress and is vital for ongoing development. The role of biomarkers in symptom science is emerging. The purpose of the study was to explore relationships between self-report of symptoms and physical activity, actigraphy measures, and cerebrospinal fluid (CSF) biomarkers. Methods: Participants were children who were ages 3 to 18 years at the time of ALL diagnosis and were now in the last 12-week cycle of ALL maintenance. Self-reports of fatigue, sleep disturbance, depressive symptoms, and physical activity were completed by participants and parents of younger children. Participants wore a wrist actigraph continuously for the 7 days before other measurements. F2-isoprostanes and interleukin-8 were evaluated in CSF samples. Results: Among the 15 participants, self-report of symptoms and physical activity indicated levels similar to healthy peers. F2-isoprostane had a strong positive correlation with fatigue levels and with depressive symptoms. Fatigue, sleep disturbance, and depressive symptoms positively correlated with each other. Actigraph measures showed children met the CDC guidelines for 60 min of daily moderate to vigorous activity; sleep time was slightly less than healthy norms. Discussion: During maintenance therapy, most children return to healthy norms in symptom burden and physical activity. F2-isoprostane in the CSF is a biomarker for fatigue and depressive symptoms. Children who had persistent symptoms experienced them as a cluster, which confirms previous symptom cluster research.
... At present, in the treatment of children with leukemia, chemotherapy is the main treatment means, but there are many adverse reactions to chemotherapy; the treatment compliance of children is poor, causing serious negative effects on the clinical efficacy of treatment [2,3]. Under normal circumstances, the children discharged from hospital with leukemia can only be given routine discharge guidance, informing their families of discharge matters needing attention, but cannot effectively improve the resistance to treatment of the children with leukemia, unable to improve the quality of life of the children [4,5]. In children with ALL, 90% of patients achieve a complete remission, and up to 80% can remain disease free at 5 years following treatment. ...
Objective. To analyze the effect of carrying out continuous nursing based on mobile platform on the life of children with leukemia after discharge. Methods. A total of 104 children diagnosed with leukemia admitted in Pediatric Internal Medicine, Hainan Provincial People’s Hospital, from September 2019 to August 2020 were randomly divided into two groups, observation group and control group, with 52 cases in each group. For the control group, routine follow-up was used for continuous nursing after discharge from hospital, and the observation group was treated with continuous nursing based on mobile platform on the basis of routine follow-up nursing after discharge from hospital. Results. When discharged from hospital, there was no significant difference in SDS and SAS scores between the two groups (P>0.05). After 8 weeks of discharge, SDS and SAS scores in both groups were significantly decreased, and SDS and SAS scores in the observation group were significantly lower than those in the control group, with statistical significance (P
... Major determinants of adverse QoL outcomes in this group are sleep problems [3] and ongoing psychological distress [5,6]. Impaired sleep seems to be a common issue in parents during treatment for ALL [7][8][9]. In fact, in a large cohort of parents after completion of their child's cancer treatment, the proportion of sleep problems was still 37% as well (compared to 16% in the general population) [10]. ...
... At three years after diagnosis (one year after end of treatment for the far majority), the prevalence was still 33%-twice as high as in the general population. Previous research on parental sleep problems in pediatric oncology found similar or even higher prevalence (around 50% during outpatient treatment, up to 70% in parents of children hospitalized for stem cell transplant); yet these studies had mostly small sample sizes, and none of them had a longitudinal design [7][8][9][33][34][35]. ...
Simple Summary
This study assessed sleep problems, distress, and quality of life in parents of children with the most common form of childhood cancer, acute lymphoblastic leukemia (ALL). Parents completed questionnaires at different time points, shortly after diagnosis until 1 year after end of treatment. Before this study, longitudinal research on parental psychosocial functioning, especially sleep problems, was sparse. This study shows that although parental functioning improves over time, 33% of parents still report sleep problems three years after their child’s diagnosis. Half of those parents also report clinical distress. Presence of sleep problems and distress negatively affects quality of life over time. Vulnerable parents are those who experience little social support or parenting problems, report a chronic illness for themselves or pain for their child, have a child with higher risk ALL, and are closer to diagnosis. This study stresses the importance of systematically monitoring parental functioning both throughout and after treatment—including sleep.
Abstract
This study assessed sleep, distress and quality of life (QoL) in parents of children with acute lymphoblastic leukemia (ALL) from diagnosis to three years after, and the impact of sleep and distress on QoL. Additionally, this study explored determinants of sleep and distress. Parents completed the MOS Sleep, Distress Thermometer for Parents and SF-12 at four-five months (T0), one year (T1), two years (T2), and three years (T3) after diagnosis. The course of outcomes and longitudinal impact of clinically relevant sleep problems (>1SD above reference’s mean) and clinical distress (score ≥ 4) on QoL Z-scores were assessed with linear mixed-models. Determinants of sleep and distress were assessed with multinomial mixed-models. Parents (81% mothers) of 139 patients (60% males; 76% medium-risk (MR)) participated. Distress and QoL gradually restored from T0 to T3. Sleep problems improved, but were still elevated at T3: 33% reported clinically relevant sleep problems, of which 48% in concurrence with distress. Over time, presence of sleep problems or distress led to lower mental QoL Z-scores (SD-score −0.2 and −0.5, respectively). Presence of both led to a cumulatively lower Z-score (SD-score −1.3). Parents in the latter group were more likely to report insufficient social support, parenting problems, a chronic illness, pain for their child, having a child with MR-ALL, and being closer to diagnosis. In conclusion, parental well-being improves over time, yet sleep problems persist. In combination with ongoing distress, they cumulatively affect QoL. Special attention should be given to parents who are vulnerable to worse outcomes.
... Many researchers have increasingly noted that sleep disturbance is inversely related to a wide range of deleterious influences on the daily life of family caregivers. For example, previous studies have shown that sleep disturbance can contribute to a range of symptoms, including increased fatigue, depression, anxiety, stress, less engagement in health-promoting activities, and decreased daytime function in family caregivers (Bourke-Taylor et al., 2013;Giallo et al., 2013;Matthews et al., 2014;McCann et al., 2015;Orta et al., 2016;Song et al., 2018). To date, much of the sleep research has been conducted on family caregivers of adults with chronic illness, such as family caregivers of people with dementia. ...
... It evaluates (1) difficulty with sleep onset, (2) difficulties with sleep maintenance, (3) problem with early morning awakening, (4) satisfaction with last night's sleep, (5) interference with daily functioning, (6) impairment attributed to the sleep problem, and (7) level of distress caused by the sleep problem (Bastien et al., 2001). The ISI was validated in the context of mothers of children with leukemia and found to have excellent psychometric properties, with an overall Cronbach's α of 0.90 (Matthews et al., 2014). In this study, Cronbach's α was 0.89. ...
Sleep disturbance is prevalent in caregivers and associated with negative physical, mental, and functional outcomes. This study examined the effects of sleep disturbance on daytime functions (sleepiness, fatigue, mood, cognitive alertness), care-related quality of life, and daily parenting interactions in 20 mothers of children with autism spectrum disorder for 10 consecutive days using ecological momentary assessment design. Participants responded about daytime functions four times and care-related quality of life and daily parenting interactions once using an online survey. Sleep disturbance was significantly related to all daytime functions and frustration with childcare. Therefore, development of sleep hygiene interventions is warranted to effectively reduce the impact of sleep disturbance and enable these mothers to better tackle daily physical and mental challenges.
... Qualitative methods such as interviews, focus groups, and participant observation were the second-most common group of methodologies included in this review (n 5 14) (see Table 1). Researchers in 5 studies employed objective measures of health; those in 2 used activity trackers 42,43 and those in 3 studies explored immune function through salivary or blood cortisol measurement. [44][45][46] Of the aforementioned studies, researchers in 2 evaluated interventions 42,47 and those in 8 used mixed methods. ...
... [44][45][46] Of the aforementioned studies, researchers in 2 evaluated interventions 42,47 and those in 8 used mixed methods. 15,43,44,[47][48][49][50][51] Table 2 outlines the different measures of caregiver health used by the included studies. ...
Context:
Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown.
Objectives:
(1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured.
Data sources:
Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched.
Study selection:
Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection.
Data extraction:
Of 69 335 unique citations, 81 studies were included in the review.
Results:
Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored.
Limitations:
Studies were heterogenous in methodology, making comparisons of results across studies difficult.
Conclusions:
These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
... Sleep efficiency was collected as part of the subjective PSQI (Orta et al., 2016) or using sleep diaries (Matthews et al., 2014) and/or based on objective measures (i.e., actigraphy and polysomnography; Macaulay et al., 2019;Meltzer, 2008;Orta et al., 2016). Sleep efficiency in caregivers ranged between 79% and 93% (Daniel et al., 2018;Feeley et al., 2019;Macaulay et al., 2019;Matthews et al., 2014). ...
... Sleep efficiency was collected as part of the subjective PSQI (Orta et al., 2016) or using sleep diaries (Matthews et al., 2014) and/or based on objective measures (i.e., actigraphy and polysomnography; Macaulay et al., 2019;Meltzer, 2008;Orta et al., 2016). Sleep efficiency in caregivers ranged between 79% and 93% (Daniel et al., 2018;Feeley et al., 2019;Macaulay et al., 2019;Matthews et al., 2014). Sleep efficiency calculated based on subjective reports (i.e., PSQI or sleep diaries) ranged from 79.2% to 91.7%. ...
... Sleep latency ranged from 7.3 to 60.0 min according to selfreported measures (Matthews et al., 2014;Orta et al., 2016). Objective measures indicated that caregiver sleep latency was between 7.1 and 31.7 min (Goldman et al., 2012;Matthews et al., 2014). ...
Objective:
The sleep of individuals who provide unpaid care for children with medical needs is likely to be significantly impacted by this role. Sleep may be affected by the practical tasks undertaken during the night (e.g., administering medication), in addition to the emotional impact (e.g., worry, rumination). The aim of this systematic review was to examine the available literature on the impact of caregiving for children with medical needs on caregivers' sleep.
Method:
Electronic databases, including PubMed, Medline, and Web of Science, were searched using predetermined criteria. Studies were included if they used validated subjective or objective measures of caregiver sleep, in contexts where caregivers were providing care for one or more children with medical needs. Data on study population, research design, and outcome measures were extracted, and study quality was reviewed by two authors.
Results:
Search criteria produced 2,172 studies for screening. Based on inclusion criteria, 40 studies were included in the final review. Sleep of caregivers of children with medical needs was poorer than that for noncaregivers. Poor sleep included reduced sleep duration, impaired sleep efficiency, increased wake after sleep onset, and perceived poorer sleep quality.
Conclusions:
Providing unpaid care for children with medical needs is associated with sleep disturbances, including less total sleep, and poorer sleep quality. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
... [12][13][14][15][16][17] Specifically during ALL maintenance treatment, reports on parental psychosocial functioning are sparse, but they show high prevalence of sleep disturbances and significant emotional distress. [18][19][20][21][22][23] However, quantitative studies regarding the specific effects of cyclic dexamethasone during ALL maintenance on parental outcomes are lacking. Additionally, although different risk groups entail different prognostic estimates and treatment intensity, which may influence parental well-being, no previous studies have been performed on the general effects of ALL risk-group stratification on parents' sleep, distress, and QoL. ...
Background:
During maintenance treatment, Dutch pediatric patients with medium-risk (MR) acute lymphoblastic leukemia (ALL) receive intravenous chemotherapy and cyclic dexamethasone. Dexamethasone affects child's sleep and behavior. Standard-risk (SR) patients only receive oral chemotherapy, without dexamethasone. Effects of stratified therapy on parents are not well known. This study compares parental sleep, distress and quality of life (QoL) with the general population, between MR and SR groups, and on- and off-dexamethasone (MR group).
Procedure:
One year after diagnosis, parents of MR patients completed the Medical Outcomes Study (MOS) sleep, distress thermometer for parents and Short Form-12 (SF-12) twice; once on-dexamethasone and once off-dexamethasone. SR parents completed one measurement. Sleep problems, distress and QoL scores (off-dexamethasone) were compared to reference values and between MR and SR. Score differences on- and off-dexamethasone were assessed by multilevel regression analysis.
Results:
Parents (80% mothers) of 121 patients (57% males; 75% MR, 25% SR) completed 191 measurements. Compared to reference values, parents reported more sleep disturbances, higher distress, and lower mental QoL. Additionally, MR parents reported clinical distress (score ≥ 4), whereas SR parents (on average) did not (mean 4.8 ± 2.4 vs 3.5 ± 2.4, P = .02). Within the MR group, outcomes did not significantly differ on- and off-dexamethasone.
Conclusions:
Parents of ALL patients report sleep problems, high distress, and QoL impairment. Within the MR group, parental functioning did not differ on- and off-dexamethasone. However, MR parents reported clinical distress more often than SR parents, possibly reflecting differences in prognostic estimates and treatment burden. This perhaps includes the overall strain of cyclic dexamethasone. This study highlights the need for psychosocial support throughout treatment, regardless of risk stratification.
... This questionnaire including 12 items questioning the fathers' sociodemographic characteristics was developed by the researcher in line with the relevant literature (1,3,6,8,9,13,16,(18)(19)(20). ...
... However, in North America, parents can stay with their children (24). In the literature, it has been reported that parents' staying with their child in the intensive care environment reduces their anxiety level (18,19,25). In a study by Colville et al. (26) (2009), parents reported that their anxiety regarding their child's condition was greater than their anxiety regarding their child's condition when they were healthy. ...
Aim:The purpose of this study was to determine the anxiety levels and needs of those fathers whose children were hospitalized in a pediatric surgery intensive care unit.Materials and Methods:This cross-sectional study was conducted with the fathers of children hospitalized in a pediatric surgery intensive care unit in 2016/2017 by using the critical care family needs inventory (CCFNI), and State and Trait Anxiety scale. Setting: Turkey, a university hospital.Results:This study included 113 fathers. The fathers’ mean age was 36.6±6.31 years. There was a weak positive correlation between the scores the fathers obtained from the State Anxiety scale and the CCFNI. There was a difference between the fathers’ intensive care needs in terms of their education levels. While ‘‘feeling that hospital personnel are attentive to the patient’’ was important for 92% of the fathers, ‘‘being sure that as much care as possible is given” was important for 88.5% and ‘‘being informed about the patient at least once a day’’ was important for 85.8%.Conclusion:The anxieties and needs of the fathers of the patients staying in a pediatric surgery intensive care unit were high, particularly in those with a low educational level. Health professionals should be aware of the fathers’ feelings, needs and stressors so that they can provide interventions specific to fathers.
... 4,15,16 Sleep duration is often adequate, but nighttime awakenings are frequent and sleep onset latency (defined as the minutes between bedtime and the first minute of sleep) is longer. 17,18 This indicates that the total minutes of sleep is sufficient but sleep is fragmented. The fragmentation of sleep could still affect patient and parental perceptions of sleep quality. ...
... 15,19 However, sleep problems are common in parents of pediatric cancer patients, with prevalence rates up to 71% in the hospital setting. 17,[19][20][21][22][23][24][25] Many parents report elevated levels of distress shortly after diagnosis and during treatment. 26 Furthermore, altered parenting strategies have been described. ...
Objective:
To assess sleep problems (prevalence and predictors) in pediatric patients with acute lymphoblastic leukemia (ALL) after the most intensive phase of therapy (induction).
Methods:
Patients (≥2 years) treated according to the Dutch ALL-11 protocol were included. Sleep was measured using parent-reports and self-reports (Children's Sleep Habits Questionnaire; CSHQ) and actigraphy. Parental sleep (Medical Outcome Study Sleep Scale) and distress and parenting problems (Distress Thermometer for Parents) were assessed with questionnaires. Z-scores were calculated for total CSHQ scores using age-appropriate scores of healthy Dutch children. The prevalence of sleep problems (defined as a Z-score > 1) in patients with ALL was compared to healthy children (chi-square tests). Actigraphic sleep estimates were collected in healthy Dutch children (n = 86, 2-18 years) for comparison with patients (linear regression). Determinants of parent-reported child sleep (total CSHQ Z-score) were identified with regression models.
Results:
Responses were collected for 124 patients (response rate 67%), comprising 123 parent-reports, 34 self-reports, and 69 actigraphy assessments. Parents reported sleep problems in 38.0% of the patients compared to 15.2% in healthy children (P < .001). Patients reported fewer sleep problems themselves: 12.1% compared to 15.8% in healthy children (P = .33). Total time in bed (B (95% CI): 22.89 (9.55-36.22)) and total sleep time (B (95% CI):16.30 (1.40-31.19)), as derived from actigraphy, were significantly longer in patients. More parent-reported child sleep problems were predicted by parenting problems, more parental sleep problems, bedroom sharing, and child's sleep medication use (explained variance: 27.4%).
Conclusions:
Systematic monitoring of child and parental sleep and implementation of effective interventions may be a gateway to improve quality of survival in pediatric ALL.
