What about the parents? : Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care

Abstract

Parents experience many stressful situations when their child is ill and needs medical care, irrespective of the child’s age, diagnosis or the severity of the illness. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, to care for their ill child, and to cope with the challenges they face. The overall aim of this thesis was to evaluate sleep, mood, cortisol response, and sense of coherence (SOC) in parents caring for children in need of medical care, and to identify factors that may influence parents’ sleep. This thesis includes four original studies; two of these are quantitative, prospective, descriptive and comparative studies including parents (n=82) accommodated in six pediatric wards with their ill child, using questionnaires and sleep logs to measure sleep, mood and SOC, and saliva cortisol to measure cortisol response. A follow-up was performed four weeks later at home, after hospital discharge. The other two studies are qualitative, inductive and explorative interview studies, including parents (n=12) staying overnight with their preterm and/or ill infant in three neonatal intensive care units, and parents (n=15) with a child receiving hospital-based home care in two pediatric outpatient clinics. The interviews were analyzed with a phenomenographic method. Being together with one’s family seems beneficial for sleep and may decrease stress. The ability to stay with the child, in the hospital or at home, was highly appreciated by the parents. When caring for a child with illness, parents’ sleep quality was sufficient in the hospital; however, sleep quality improved further (p&lt;0.05) at home after discharge. The parents reported frequent nocturnal awakenings in the hospital caused by the child, medical treatment and hospital staff. Concern and anxiety about the child’s health, and uncertainty about the future were stressors affecting the parents’ sleep and mood negatively. The parents had lower (p=0.01) morning awakening cortisol levels in the pediatric ward compared to at home, and parents accommodated for more than one night had lower (p&lt;0.05) post-awakening cortisol levels compared to parents staying their first night. The findings of this thesis conclude that being together as a family is important for the parents’ sleep. The ability to be accommodated in the hospital and gather the family around the child may have given the parents time for relaxation and recovery, that in turn may lead to a less stressful hospital stay. When it is beneficial for the child, the whole family should be included in the pediatric care. Moreover, pediatric nurses must acknowledge parents’ sleep, in hospital and at home. Medical treatment and care at night should be scheduled and sleep promoted for the parents in order to maintain health and well-being in the family.<p>The electronic version of the thesis is a corrected version of the printed thesis.</p><p>This thesis has also been funded by <em>Barnklinikens 60-årsfond, Filip SchelinsStiftelse, Riksföreningen för barnsjuk...