Caring for Chronically Ill Children

In pediatric psychology, we learn early on that children do not exist in a vacuum. It is impossible to consider the impact of a chronic illness on a child’s functioning and quality of life without also considering the impact the illness has on the entire family. Approximately 1 million children have a chronic physical condition that requires ongoing and comprehensive medical care. With advances in technology, this type of care is frequently being moved into the home, requiring parents to become caregivers, which involves administering complex daily medical regimens. Although many may say that it is the parent’s job to be a caregiver, the demands placed on parents of children with chronic illnesses are above and beyond those placed on “normal” parents. Thus, parents of chronically ill children are more appropriately referred to as “caregivers.”

Informal caregivers have been defined as individuals who provide extraordinary, uncompensated care, predominantly in the home setting.¹ This caregiving requires a significant amount of time and energy for months or years, and the tasks performed may be physically, emotionally, socially, and/or financially draining. The prevalence of informal caregiving (both of children and adults) is high, with estimates ranging from 15 to 22.4 million individuals in the United States.

Although the impact of caring for another individual, be it an adult or child, is significant for all caregivers, caring for a child with a chronic illness combines the daily demands of “regular” parenting with the emotional and physical burdens of caring for the child’s illness. Parents of chronically ill children report higher rates of anxiety, depression, and parenting stress, and more limited social interactions than parents of children without an illness.² It is important to remember that most of these parents were functioning competently prior to assuming the role of a caregiver. Therefore, it is essential to understand some of the underlying stressors related to caregiving that may result in caregiver burden and distress.

Underlying Stressors
A previous research study focusing on the impact of caregiving on parents of chronically ill children found that caregiving during the night was the most stressful type (compared to administering medications, performing home medical procedures such as flushing a central line or chest physiotherapy, and medical appointments outside of the home).³ Parents who have children with chronic illnesses frequently report not having enough hours in the day and choose to sacrifice sleep in order to accomplish the many tasks on their “to do” list. In addition, not only are caregivers dealing with the day-to-day list, they are often providing medical care during the night, compounding their loss of sleep. Although some families have home care nurses to help with the caregiving, insufficient insurance and insufficient nursing staff often result in limiting the number of hours families receive help, especially during the night.

The relationship between sleep (or the lack of sleep) and caregiving has been significantly understudied in the empirical research literature. For caregivers of adult patients, a small number of recent studies have demonstrated that caregiver sleep is significantly disrupted. In studies of caregivers of dementia or adult cancer patients, a significant relationship between sleep and depression has been found.^4,5 Female caregivers of adults with AIDS, age-related dementia, or advanced-stage cancer found a relationship between distressing emotions and sleep problems. In addition, different sleep problems (trouble falling asleep, restless sleep, and trouble staying asleep) were reported based on the illness being cared for. For example, caregivers of cancer patients reported significantly fewer problems falling asleep but significantly greater problems staying asleep compared to the other two groups. Similarly, caregivers of dementia patients reported significantly less restless sleep than the other two illness groups.

The relationship between sleep and caregiving in pediatric populations is even less studied. One study of caregivers found that parents of children with epilepsy changed sleeping arrangements (increased child cosleeping with parents) following diagnosis more than parents of children with diabetes.⁶ In terms of daytime functioning in caregivers, parents of children with asthma reported missing more days of work when caring for children who woke during the night due to asthma.⁷

Insufficient Sleep in Caregivers
Together, these studies of sleep in caregivers and children with chronic illnesses suggest a potential relationship between sleep and negative psychosocial outcomes. It is likely that increased stress in caregivers leads to poor sleep, and disrupted sleep, whether from daytime stress or caregiving during the night, can result in negative mood, increased daytime stress, and more limited daytime functioning.

Caring for a child with a chronic illness can lead to significant feelings of burden; however, the perception of this burden may increase with disrupted sleep. Studies on the impact of insufficient sleep in adults have demonstrated repeatedly that subjects report significant problems with sleepiness and increased cognitive, emotional, and somatic complaints following cumulative sleep restriction.^8,9 The stress-related neurobehavioral effects from partial sleep deprivation may result in increased sensitivity to dysphoria and mood lability. Applying these findings to caregivers, it is likely that the changes in mood functioning following partial sleep deprivation may result in a greater perception of stress related to caregiving duties. Since the relationship between sleep and caregiving stress is cyclical in nature, with decreased sleep resulting in more negative mood and stress, and higher stress levels resulting in poorer sleep quality and sleep maintenance, it is likely that sleep has a significant role in the burden experienced by caregivers of children with chronic illnesses.

Research Project
The need to examine these underlying stressors has resulted in a research project (funded by the National Sleep Foundation’s Pickwick Postdoctoral Fellowship in Sleep Medicine) focusing on sleep patterns in caregivers of children with chronic illnesses. This study is examining the relationship between sleep (quality, quantity, and disruptions), caregiving, and psychosocial outcomes (depression, social support, and daytime functioning). In addition, the study is focusing on the sleep patterns of caregivers of children with and without chronic illnesses, as well as sleep patterns in children with and without chronic illnesses. Participants in this study have children with kidney disorders, cancer, cystic fibrosis, or ventilator dependency.

Although data collection is in the preliminary stages, anecdotally it is already clear that both parent and child sleep differs for those with chronic illnesses. Caregivers of children who are post-kidney transplant have reported that both their own and their child’s sleep has improved now that the child does not have to get up to urinate several times during the night or they are no longer doing peritoneal dialysis during the night. Caregivers of children with cancer have talked about how their child causes more disruptions at bedtime, or wakes more frequently during the night, especially after a chemotherapy treatment. Finally, caregivers of children who require ventilator support have talked at length about the nursing shortage, which leaves them without support during the night, the need to respond to alarms every 30 minutes throughout the night, or if they are fortunate to have nighttime nursing, how these nurses will wake the parents with noises or unnecessary questions during the night.

Conclusion
It is crucial to understand the role sleep plays in caregiver stress, psychosocial functioning, and daytime functioning in order to understand the physical and emotional impact of caregiving on both parents and children. In the 21st century, informal caregiving has the potential of becoming a public health issue, with increasing numbers of children and adults requiring medical care at home. In order to address both the tangible and emotional needs of these caregivers, and to prevent unnecessary medical errors that may result from disrupted sleep, sleep must be included as a focus for both pediatric and adult health care researchers.

Lisa J. Meltzer, PhD, is Pickwick Postdoctoral Fellow in Sleep Medicine, The Children’s Hospital of Philadelphia.

References
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5. Flaskerud JH, Carter P, Lee P. Distressing emotions in female caregivers of people with AIDS, age-related dementias, and advanced stage cancers. Perspect Psychiatr Care. 2000;36:121-130.
6. Williams J, Lange B, Sharp G, et al. Altered sleeping arrangements in pediatric patients with epilepsy. Clin Pediatr. 2000;39:635-642.
7. Diette GB, Markson L, Skinner EA, Nguyen TTH, Algatt-Bergstrom P, Wu AW. Nocturnal asthma in children affects school attendance, school performance, and parents’ work attendance. Arch Pediatr Adolesc Med. 2000;154:923-928.
8. Dinges DF. Stress, fatigue, and behavioral energy. Nutr Rev. 2001;59:S30-S32.
9. Dinges DF, Pack F, Williams K, et al. Cumulative sleepiness, mood disturbance, and psychomotor vigilance performance decrements during a week of sleep restricted to 4-5 hours per night. Sleep. 1997;20:267-277.