Quality of life of parental caregivers of children (1-36 months) with a tracheostomy
Dr. Rachel Abraham Joseph, PhD, CCRN
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Children's health and well-being are invariably related to the health and well-being of their parents or caregivers. Many parents undertake home care of children with a tracheostomy who require highly complex and technology driven care that would have been formerly assumed by health care providers. Parents accept multiple responsibilities- that of an advocate, case manager, parent, nurse, and much more. A cross sectional descriptive study using survey method was conducted to gather data on stress, coping and quality of life in parents of children with a tracheostomy aged one month to 36 months. The survey was administered via a secure internet data collection site using www.surverymonkey.com. Hardcopies of the surveys were made available to parents to complete if interested via airway management clinics to avoid sampling bias. Analyses of the data using descriptive statistics and parametric testing using SPSS were performed. Although 100 participants initiated the survey 71 participants completed all the instruments. Results indicate that the parents are stressed, the quality of life scores are in the moderate distress range (M=64.07, SD=17.15). Bivariate analysis showed that quality of life scores were significantly associated with coping, r(69)=.57; p=<.01 and stress r(69)=.46, p<.01. Multivariate analysis revealed that quality of life scores were significantly associated with lower levels of stress, B=-.63, β=-.29, p=<.01 and higher quality of life scores were significantly associated with higher levels of coping, B=19.91, β=.43, p=<.001. These results warrant change in practice. Planning for better training of parents prior to discharge and availability of respite services and other resources may enhance quality of life of parental caregivers who care for children with tracheostomy at home.
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 3546952; ProQuest document ID: 1267150295. The author still retains copyright.
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