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The effectiveness of using a care book in managing children's medical condition at home
Author
Tan, Keith Cheng Poh
Supervisor
D'Rozario, Vilma
Abstract
The objective of this study was to examine if the use of a Care Book enhanced how families coped with their children's medical condition after their children had been discharged from the hospital with medical technology. This study builds on a case study by Schumer & Siminger (1991) on the collaborative development of a Care Book between parents and the medical staff.
Care at home is an important option for patients with acute or chronic health problems. Advancements in medical and nursing care have seen children discharged home earlier than previously. This has resulted in parents having to learn how to care for their children without sometimes first coming to terms with their children's medical condition. These parents also have to adjust their respective private and social lives around their children, sometimes resulting in a change in employment or socio-economic status. Parents have frequently reported the lack of respite care as they have to provide 24-hour care to their children with medical technology. These parents have also reported the breakdown or decrease in their social networks.
A Care Book was developed with parents and included materials that would help parents care for their children dependent on medical technology at home. The Care Book also intended to allow parents to obtain respite care for their children so that parents may resume some routines they engaged in before the diagnosis of their children with a medical condition.
The hypothesis of the study is that with the collaborative development of the Care Book with parents, there would be an increased awareness of the parental roles and responsibilities of caring for children under home care. There would also be an increased awareness in parental resources for management through increased social interaction and better support for these parents.
The conclusions from the study indicate that parental communication (including communication with the medical team) increased. Parents were more keen to communicate their concerns with the medical team with the Care Book. However, parents were more vulnerable to stressors and experienced a drop in social support networks. This could be attributed to the long stay in the hospital and a reduction in social interactions. With the Care Book, parents showed a significant improvement in their resources for management and were better able to manage their technologically dependent children.
Care at home is an important option for patients with acute or chronic health problems. Advancements in medical and nursing care have seen children discharged home earlier than previously. This has resulted in parents having to learn how to care for their children without sometimes first coming to terms with their children's medical condition. These parents also have to adjust their respective private and social lives around their children, sometimes resulting in a change in employment or socio-economic status. Parents have frequently reported the lack of respite care as they have to provide 24-hour care to their children with medical technology. These parents have also reported the breakdown or decrease in their social networks.
A Care Book was developed with parents and included materials that would help parents care for their children dependent on medical technology at home. The Care Book also intended to allow parents to obtain respite care for their children so that parents may resume some routines they engaged in before the diagnosis of their children with a medical condition.
The hypothesis of the study is that with the collaborative development of the Care Book with parents, there would be an increased awareness of the parental roles and responsibilities of caring for children under home care. There would also be an increased awareness in parental resources for management through increased social interaction and better support for these parents.
The conclusions from the study indicate that parental communication (including communication with the medical team) increased. Parents were more keen to communicate their concerns with the medical team with the Care Book. However, parents were more vulnerable to stressors and experienced a drop in social support networks. This could be attributed to the long stay in the hospital and a reduction in social interactions. With the Care Book, parents showed a significant improvement in their resources for management and were better able to manage their technologically dependent children.
Date Issued
2004
Call Number
RJ380 Tan
Date Submitted
2004