Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

2023

e30291

06/2023

1545-5017

BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics.

PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19.

RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time.

CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

10.1002/pbc.30291

Pediatr Blood Cancer

36951413

Maternal Perceptions of Evidence-Based Early Childhood Sleep Health Promotion Recommendations: An Explanatory Sequential Study.

2023

1-13

04/2023

1540-2010

OBJECTIVES: The purpose of this explanatory sequential design study was to better understand caregivers' perceptions about and interest in evidence-based early childhood sleep health promotion recommendations.

METHOD: A purposeful sample of mothers of 20 1-5-year-old children (10 children exhibiting optimal sleep and 10 children exhibiting insufficient/fragmented sleep) attending a preschool serving a low socio-economic (SES) status metropolitan community were invited to participate in qualitative interviews. Data were coded according to a grounded theory approach and themes were identified within the optimal and suboptimal sleeper groups.

RESULTS: Mothers reported different approaches to managing electronics by optimal/suboptimal sleeper group, with mothers of optimal sleepers limiting access to electronics more than mothers in the suboptimal sleep group. Other themes of sleep health practices did not differ meaningfully between groups.

CONCLUSIONS: Maternal perspectives about early childhood sleep health were similar across optimal and suboptimal sleepers on most elements of child sleep health. Managing child sleep was contextually influenced and these results highlight the complexities of how families living in lower SES environments perceive common sleep recommendations. Thus, sleep health education efforts should be tailored to the needs and values of specific families and communities.

10.1080/15402002.2023.2189723

Behav Sleep Med

37042454

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

2023

e30291

03/2023

1545-5017

BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics.

PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19.

RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time.

CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

10.1002/pbc.30291

Pediatr Blood Cancer

36951413

Identifying Modifiable Factors Linking Parenting and Sleep in Racial/Ethnic Minority Children.

2020

2020 May 24

1465-735X

<p><strong>BACKGROUND: </strong>Young children from racial and ethnic minority backgrounds are at risk for poor sleep, yet few studies have tested behavioral interventions in diverse samples. This study tests factors that could contribute to associations between parenting skills and child sleep to inform interventions for children at risk of poor sleep outcomes. Specifically, we examined household chaos, caregiver sleep knowledge, and caregiver sleep quality as putative mediators that may be relevant to interventions seeking to improve child sleep.</p>

<p><strong>METHODS: </strong>Caregivers (M age 31.83 years; 46.2% African American; 52.1% Hispanic/Latinx, 95% female) of 119 1- to 5-year-old children (M age 3.99 years; 43.7% African American; 42.0% Hispanic/Latinx, 14.3% biracial; 51.3% female) completed measures of parenting practices, child and caregiver sleep, household chaos, and sleep knowledge. Indices of pediatric insomnia symptoms (difficulty falling/remaining asleep) and sleep health (sleep duration/hygiene) were constructed based on previous research. Parallel mediation models were conducted using ordinary least squares path analysis.</p>

<p><strong>RESULTS: </strong>Lower household chaos significantly attenuated the relationship between positive parenting skills and better child sleep health, suggesting chaos may serve as a potential mediator. There were no significant contributing factors in the pediatric insomnia model. Sleep knowledge was related to sleep health and caregiver sleep quality was related to pediatric insomnia, independent of parenting skills.</p>

<p><strong>CONCLUSION: </strong>Interventions to improve sleep in early childhood may be enhanced by targeting parenting skills and household routines to reduce chaos. Future longitudinal research is needed to test household chaos and other potential mediators of child sleep outcomes over time.</p>

10.1093/jpepsy/jsaa034

J Pediatr Psychol

32447371

Feasibility and Acceptability of a Pilot Tailored Text Messaging Intervention for Adolescents and Young Adults Completing Cancer Treatment.

2019

2019 Nov 11

1099-1611

<p><strong>PURPOSE: </strong>Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors.</p>

<p><strong>METHODS: </strong>Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n=31) or an AYA survivor handbook (n=30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received 1-2 health-related text messages per day over 16 weeks.</p>

<p><strong>RESULTS: </strong>THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability.</p>

<p><strong>CONCLUSIONS: </strong>Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.</p>

10.1002/pon.5287

Psychooncology

31713265

Text Message Responsivity in a 2-Way Short Message Service Pilot Intervention With Adolescent and Young Adult Survivors of Cancer.

2019

e12547

2019 Apr 18

2291-5222

<p><strong>OBJECTIVE: </strong>Within a 2-way text messaging study in AYAs who recently completed treatment for cancer, we sought to evaluate text message responsivity across different types of text messages.</p>

<p><strong>METHODS: </strong>AYAs who recently completed treatment for cancer (n=26; mean age=16 years; 62% female, 16/26 participants) received 2-way text messages about survivorship health topics over a 16-week period. Using participants' text message log data, we coded responsivity to text messages and evaluated trends in responsivity to unprompted text messages and prompted text messages of varying content (eg, medication reminders, appointment reminders, and texts about personal experiences as a cancer survivor).</p>

<p><strong>RESULTS: </strong>Across prompted and unprompted text messages, responsivity rapidly decreased (P ≤.001 and =.01, respectively) and plateaued by the third week of the intervention. However, participants were more responsive to prompted text messages (mean responsivity=46% by week 16) than unprompted messages (mean responsivity=10% by week 16). They also demonstrated stable responsivity to certain prompted content: medication reminders, appointment reminders, goal motivation, goal progress, and patient experience texts.</p>

<p><strong>CONCLUSIONS: </strong>Our methodology of evaluating text message responsivity revealed important patterns of engagement in a 2-way text message intervention for AYA cancer survivors.</p>

10.2196/12547

JMIR Mhealth Uhealth

30998225

Sleep, emotional distress, and physical health in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

2019

2019 Feb 28

1099-1611

<p><strong>OBJECTIVE: </strong>Sleep disorders are associated with psychological and physical health, though reports in long-term survivors of childhood cancer are limited. We characterized the prevalence and risk factors for behaviors consistent with sleep disorders in survivors and examined longitudinal associations with emotional distress and physical health outcomes.</p>

<p><strong>METHODS: </strong>Survivors (n=1933; median [IQR] age=35 [30, 41]) and siblings (n=380; age=33 [27, 40]) from the Childhood Cancer Survivor Study completed measures of sleep quality, fatigue, and sleepiness. Emotional distress and physical health outcomes were assessed approximately five years before and after the sleep survey. Multivariable logistic or modified Poisson regression models examined associations with cancer diagnosis, treatment exposures, and emotional and physical health outcomes.</p>

<p><strong>RESULTS: </strong>Survivors were more likely to report poor sleep efficiency (30.8% vs. 24.7%; prevalence ratio [PR]=1.26, 95% confidence interval [1.04-1.53]), daytime sleepiness (18.7% vs. 14.2%; PR=1.31[1.01-1.71]), and sleep supplement use (13.5% vs. 8.3%; PR=1.56[1.09-2.22]) than siblings. Survivors who developed emotional distress were more likely to report poor sleep efficiency (PR=1.70[1.40-2.07]), restricted sleep time (PR=1.35[1.12-1.62]), fatigue (PR=2.11[1.92-2.32]), daytime sleepiness (PR=2.19[1.71-2.82]), snoring (PR=1.85[1.08-3.16]), and more sleep medication (PR=2.86[2.00-4.09]) and supplement use (PR=1.89[1.33-2.69]). Survivors reporting symptoms of insomnia (PR=1.46[1.02-2.08]), fatigue (PR=1.31[1.01-1.72]), and using sleep medications (PR=2.16[1.13-4.12]) were more likely to develop migraines/headaches.</p>

<p><strong>CONCLUSIONS: </strong>Survivors report more sleep difficulties and efforts to manage sleep than siblings. These sleep behaviors are related to worsening or persistently elevated emotional distress and may result in increased risk for migraines. Behavioral interventions targeting sleep may be important for improving health outcomes.</p>

10.1002/pon.5040

Psychooncology

30817058

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

2017

983-994

2017 Oct 01

1465-735X

<p><strong>Objective: </strong>The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods.</p>

<p><strong>Methods: </strong>Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART).</p>

<p><strong>Results: </strong>Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version.</p>

<p><strong>Conclusions: </strong>TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.</p>

10.1093/jpepsy/jsx095

J Pediatr Psychol

29046041

Sleep in Adolescents and Young Adults in the Year After Cancer Treatment.

2017

2017 Jun 19

2156-535X

<p><strong>PURPOSE: </strong>Adolescents and young adults (AYA) with cancer are a vulnerable group facing more intense treatments, higher symptom burden, and poorer treatment outcomes relative to younger children. Sleep disruption is common during cancer treatment and sleep problems persist into adulthood for some survivors of AYA cancer. The developmental period of adolescence/emerging adulthood confers greater biological and behavioral risk for insufficient sleep relative to older or younger ages. Thus, understanding AYA sleep disturbances shortly after completing treatment can inform interventions to manage cancer-related symptoms and improve quality of life.</p>

<p><strong>METHODS: </strong>Sixty-one AYA (ages 12-25) within 1 year of finishing cancer treatment completed the Pittsburgh Sleep Quality Index (PSQI) and the Minneapolis-Manchester Quality of Life Instrument-Adolescent Form. Treatment variables were extracted from electronic medical records.</p>

<p><strong>RESULTS: </strong>Forty-seven percent of participants were classified as "poor sleepers," 41% reported prolonged sleep onset latency (&gt;30 minutes), 31% reported sleep efficiency suggestive of insomnia, and 33% slept &lt;8 hours nightly. Age moderated the relationship between time off treatment and PSQI total score: for younger AYA the relationship was positive and for older AYA the relationship was negative. Better sleep and higher quality of life were strongly related (r = -0.57, p &lt; 0.001).</p>

<p><strong>CONCLUSIONS: </strong>For almost half of AYA cancer survivors studied, sleep is disrupted as indicated by long sleep-onset latencies, sleep efficiency suggestive of insomnia, and inadequate total sleep time. Screening for sleep disturbances after AYA complete cancer therapy may reduce the impact of sleep on quality of life and identify those at risk for insomnia.</p>

10.1089/jayao.2017.0006

J Adolesc Young Adult Oncol

28628351

Initial Validation of the Sleep Disturbances in Pediatric Cancer Model.

2016

2016 Mar 18

1465-735X

<p>OBJECTIVE : The current study evaluates content validity of the Sleep Disturbance in Pediatric Cancer (SDPC) model using qualitative and quantitative stakeholder input.  METHODS : Parents of children (aged: 3-12 years) with acute lymphoblastic leukemia (n = 20) and medical providers (n = 6) participated in semi-structured interviews about child sleep during cancer treatment. They also rated SDPC model component importance on a 0-4 scale and selected the most relevant sleep-related intervention targets.  RESULTS : Qualitatively, parents and providers endorsed that changes in the child's psychosocial, environmental, and biological processes affect sleep. Stakeholders rated most model components (parent: 32 of 40; provider: 39 of 41) as important (&gt;2) to child sleep. Parents were most interested in interventions targeting difficulty falling asleep and providers selected irregular sleep habits/scheduling, though groups did not differ significantly. CONCLUSIONS : Stakeholders supported SDPC content validity. The model will inform subsequent measure and intervention development focusing on biological and behavioral factors most salient to sleep disturbances in pediatric cancer.</p>

10.1093/jpepsy/jsw008

J Pediatr Psychol

26994058