Parents' experience of coming to know the care of a chronically ill child

Abstract

The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.

Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families

“…The concept of empowerment in caregivers has been recognized as particularly important when a child has a progressive condition over which there is very little control. 30,31 Negative impacts included a lack of choice in shifting to home MI-E treatment. In other studies, parents similarly expressed concern about the lack of choice in considering life-support technologies (eg, ventilatory support) due to the consequences of not beginning ventilation 32 and the potential quality-of-life benefits for the child.…”

Vivenciando com o filho uma passagem difícil e reveladora: a experiência da mãe acompanhante

“…Como a família percebe esse evento depende da sua habilidade de manejar recursos e de um sistema de apoio para ela. Ao que MACEDO (1994) e JERRET (1994) complementam que ao longo de suas vidas, as famílias vivenciam problemas e enfrentam situações críticas, mas cada uma apresenta as suas peculiaridades e seus padrões interacionais específicos; por isso, a experiência da doença é considerada no contexto de significados que ela tem para a família.…”

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

“…They became "expert" in the care of their children and started taking charge. The findings showed the patterns of how the parents learn through the events and activities involved in the daily care of their CSHCN (Jerrett, 1994). This study acknowledges the contributions the family made toward the health and functioning of CSHCN by caring for them at home.…”

“…Other factors influencing how families react under these circumstances include family stage, life history and experiences, maturity, available support systems, understanding about the condition, acceptance of the diagnosis and prognosis, and perceived control over the situation (Carnevale, Alexander, Davis, Rennick, Troini, 2006;Knafl, Breitmayer, Gallo, & Zoeller, 1996). Other sources of stress are the caregiver's own physical and psychological health (Brehaut et al, 2009), daily care management of the child's medical condition (Heaton et al, 2005;Jerrett, 1994;Youngblut et al, 1994), financial difficulties including income, employment, out-of-pocket expenses, and insurance coverage (Kuhlthau et al, 2005), unmet needs for the CSHCN and the family (Benedict, 2008), and concerns for their child's future (Reeves, Timmons, Dampier, 2006;Sullivan-Bolyai et al, 2003).…”

“…In a phenomenological study, Jerrett (1994) investigated the lived experiences of parents involved in the day-to-day caring for children with juvenile arthritis. Nineteen parents from 10 two-parent families participated with both parents being interviewed separately.…”