Thesis advisor: Judith A. Vessey / Background: Parents of children with epilepsy and other neurological conditions live with a feeling of constant uncertainty. The uncertainty associated with caring for a child with epilepsy and other neurological conditions produces stress, which leads to decreased parental belief in caregiving skills, anxiety, and depression, ultimately altering parental functioning resulting in an increase in child behavioral problems. The stress associated with caring for a child with epilepsy and other neurological conditions is unlike caring for children with other chronic conditions. Epilepsy and other neurological conditions are unpredictable and there are often no warning signs prior to an acute event. This unpredictability accompanied with stigma results in social isolation and impacts family functioning. In addition, children with epilepsy have a higher rate of psychological co-morbidities and behavior problems when compared to children with other chronic conditions. This produces an additional burden on the parents and family. Study Design: This randomized controlled trial tested the efficacy of the COPE intervention for parents of children with epilepsy and other neurological conditions. This intervention was administered at three intervals: 1) during hospital admission in writing and by audiotape, MP3 download, or Podcast; 2) three days following hospital discharge by telephone; and 3) four to six weeks after hospital discharge in writing and by audiotape, MP3 download, or Podcast. Results: Forty-six parents of children admitted to the inpatient neuroscience unit at Boston Children's Hospital participated in the study. Several study limitations resulted in an inadequate sample size to obtain the power necessary to reach statistically significant results for a majority of the research questions. A one-between, one-within multivariate analysis of variance (MANOVA) revealed that the main effect of time was significant for differences in state anxiety for both the Usual Care Group and the Intervention Group, F, (1, 20) = 9.86, p = .005, indicating that state anxiety for both groups combined was more pronounced during the hospitalization. A one-between, one-within MANOVA demonstrated that the effect of the interaction between time and group was significant for internalized behavior assessment system score only (p=.037) as the Usual Care Group reported a significant decrease in internalizing behavior scores in their children over time. Conclusions: Findings from this study have significant implications for clinical practice and future research. Parents of children with neurological conditions often struggle to manage a constant feeling of uncertainty in their daily lives. Nurses possess the knowledge and expertise necessary to identify the psychosocial needs of these parents and provide education and support as needed. Future research should focus on designing interventions to meet the needs of these families and develop strategies to help improve the quality of life for both the parent and child living with a neurological condition. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.
| Identifer | oai:union.ndltd.org:BOSTON/oai:dlib.bc.edu:bc-ir_101323 |
| Date | January 2013 |
| Creators | Duffy, Lisa |
| Publisher | Boston College |
| Source Sets | Boston College |
| Language | English |
| Detected Language | English |
| Type | Text, thesis |
| Format | electronic, application/pdf |
| Rights | Copyright is held by the author, with all rights reserved, unless otherwise noted. |
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