Sleep of Parents Living With a Child Receiving Hospital-Based Home Care

Charlotte Angelhoff, Ulla Edéll-Gustafsson, Evalotte Mörelius

Caring for an ill child at home gives the family the chance to be together in a familiar environment. However, this involves several nocturnal sleep disturbances, such as frequent awakenings and bad sleep quality, which may affect parents' ability to take care of the child and themselves. The aim of this study was to describe parents' perceptions of circumstances influencing their own sleep when living with a child enrolled in hospital-based home care (HBHC) services. This is a phenomenographical study with an inductive, exploratory design. Fifteen parents (11 mothers and 4 fathers) with children enrolled in HBHC services were interviewed. Data were analyzed to discover content-related categories describing differences in ways parents experienced sleep when caring for their children receiving HBHC. Four descriptive categories were detected: sleep influences mood and mood influences sleep; support influences safeness and safeness influences sleep; the child's needs influence routines and routines influence sleep; and "me time" influences sleep. Sleep does not affect only the parents' well-being but also the child's care. Symptoms of stress may limit the parents' capacity to meet the child's needs. Support, me time, and physical activity were perceived as essential sources for recovery and sleep. It is important for nurses to acknowledge parental sleep in the child's nursing care plan and help the parents perform self-care to promote sleep and maintain life, health, and well-being.