Young Caregivers and 24-Hour Rest-Activity Rhythm: A Feasibility Assessment

Background and Purpose: Sleep-wake disruption is common among ‘informal family caregivers’, and is more prevalent than in the general adult population. However, these disruptions remain largely unknown in a vulnerable and isolated subset of caregivers – children and youth under the age of 18. These ‘young caregivers’ provide care across the disease spectrum and care need, including amyotrophic lateral sclerosis (ALS), a disease with numerous complicated and intensive care needs. Caregiving impacts youth school attendance and performance, and managing their own mental well-being, yet the health effect effects, including sleep, are largely unknown. With no known data on sleep disruption in young caregivers, this project sought to assess the feasibility of collecting 5 day, 24-hour sleep-wake data with which to measure sleep-wake disruption in young caregivers.

Methods:Quasi-experimental design, with age and gender matched treatment and control groups. Caregiving youth “treatment” (n=7) recruited via the ALS Multidisciplinary clinic at Froedtert Hospital and the local Wisconsin Chapter of the ALS Association. Non-caregiving youth (n=13) were recruited using snowball techniques andword of mouth via the research team. Participants wore an GENE-active actigraphy device, and kept a daily journal of all activities for 5 consecutive 24-hour periods. Study measures included demographics, caregiving tasks, Sleep Quality (Pittsburgh Sleep Quality Index),  and sleep-wake measures: 1) Self-reported bedtimes and awake times, 2) total sleep time and the number of minutes awake after sleep onset. Rest-activity rhythm (RAR) parameters were modelled from minute-to-minute actigraphy count data by a five-parameter cosine model with an anti-logistic function.

Results:All participants wore the watch and completed their journal for the full 5 days. Caregivers participated in an average of 7 caregiving tasks, including feeding, bathing, and transferring. Young caregiver sleep patterns were less stable (.49; p =.07), more fragmented, (.93; p=.07) and less robust (0.68; p =.004) than non-caregivers.

Conclusion:This data is the first to track sleep in young caregivers, and may serve as an baseline to assess future cascading health impacts of care associated with disruptive sleep (obesity, anxiety etc.). Future research will include additional populations (e.g. Multiple Sclerosis or Alzheimer's disease), add measures of mental health and well-being, and add a pro-inflammatory biomarker (IL-6), related to sleep and mood disturbance. Understanding how care disrupts sleep is critical towards lessening the potential for long-term impacts of caregiving on youth health and well-being, including obesity, anxiety and depression. Results have clear practice implications for health and social care providers and the creation of targeted health and social interventions for young caregivers.