Quality of life: Psychological, family, and social correlates in children with hemophilia

2.50
Hdl Handle:
http://hdl.handle.net/10755/154912
Type:
Presentation
Title:
Quality of life: Psychological, family, and social correlates in children with hemophilia
Abstract:
Quality of life: Psychological, family, and social correlates in children with hemophilia
Conference Sponsor:Sigma Theta Tau International
Conference Year:1992
Conference Date:August 6 - 8, 1992
Author:Tse, Alice, PhD
P.I. Institution Name:University of Hawaii at Manoa School of Nursing
Title:
Nursing management programs for children with hemophilia successfully reduced the incidence of deformities and immobilization, resulting in a near normal quality of life for children affected by this problem. Children with hemophilia who received transfusions or coagulation factors between 1979 and 1985 were exposed to potentially HIV contaminated blood and clotting factors. By 1983 the development of HIV seropositivity and AIDS in persons with hemophilia was noted. To date, the CDC prevalence estimates indicate that 85 to 95 percent of persons with hemophilia will develop HIV seropositivity and AIDS. Thus, a new stress has been imposed on children with hemophilia. This may have a potentially profound effect on nursing management of these children.



The ecological framework was used to direct the selection of variables that influence the quality of life of children with hemophilia. Interacting with the child is the family environment and the social environment. The quality of the child's life depends on a dynamic interaction between the individual and the environment. The research literature on HIV infected persons with hemophilia demonstrates variable complications and clinical outcomes. Despite the numerous studies focusing on physical symptoms of HIV seropositive hemophiliacs, no systematic study was found to document the quality of life in a potentially HIV infected child with hemophilia. Empirical studies on the quality of life in children with hemophilia could not be located. Research on boys with hemophilia frequently focused on behaviors, academic achievements, peer interactions and emotions.



This two group comparative study explored the quality of life of children with hemophilia. Variables measured related to the child, family environment and support networks. Attitude and self-esteem were measured by the child's self-report. Proxy measures consisting of the parent's response were used to measure the child's quality of life, behavior, coping, the family environment, and perceived quality and nature of support received. All of the child/parent dyads from a comprehensive hemophilia clinic, who met the study criteria were invited to participate. A response rate of 42 percent (n=17) was obtained from the hemophilia clinic. A convenience sample of well child/parent dyads were selected from a private pediatric practice to participate as the comparison group. The response for this group was 58 percent (n=24).



The data were analyzed using descriptive statistics, comparison of means, independent t-tests and measures of association. The majority of the children in the hemophilia group were HIV seropositive. Responses on the instruments indicated that most families of children with hemophilia perceived themselves similar to the general population, yet children perceived themselves as being picked on more often than their healthy peers. Significant differences were found between responses of families with healthy children and families with children with hemophilia in the areas of family conflict and activities. Strong relationships were obtained between the parent's perception of the child's quality of life rating and: (1) the child's behavior, (2) family conflict, (3) organization and (4) activities. These relationships were only present in families with children with hemophilia. Thus, the parent's perception of the child's quality of life was similar for both groups, either because of an effective support program at the care facility or because no differences exist. Future research focused on developing a measure of child quality of life and interventions to reduce family conflict and promote family activity is suggested.
Repository Posting Date:
26-Oct-2011
Date of Publication:
6-Aug-1992
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleQuality of life: Psychological, family, and social correlates in children with hemophiliaen_GB
dc.identifier.urihttp://hdl.handle.net/10755/154912-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Quality of life: Psychological, family, and social correlates in children with hemophilia</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">1992</td></tr><tr class="item-conference-date"><td class="label">Conference Date:</td><td class="value">August 6 - 8, 1992</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Tse, Alice, PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Hawaii at Manoa School of Nursing</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value"> </td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">atse@hawaii.edu</td></tr><tr><td colspan="2" class="item-abstract">Nursing management programs for children with hemophilia successfully reduced the incidence of deformities and immobilization, resulting in a near normal quality of life for children affected by this problem. Children with hemophilia who received transfusions or coagulation factors between 1979 and 1985 were exposed to potentially HIV contaminated blood and clotting factors. By 1983 the development of HIV seropositivity and AIDS in persons with hemophilia was noted. To date, the CDC prevalence estimates indicate that 85 to 95 percent of persons with hemophilia will develop HIV seropositivity and AIDS. Thus, a new stress has been imposed on children with hemophilia. This may have a potentially profound effect on nursing management of these children.<br/><br/><br/><br/>The ecological framework was used to direct the selection of variables that influence the quality of life of children with hemophilia. Interacting with the child is the family environment and the social environment. The quality of the child's life depends on a dynamic interaction between the individual and the environment. The research literature on HIV infected persons with hemophilia demonstrates variable complications and clinical outcomes. Despite the numerous studies focusing on physical symptoms of HIV seropositive hemophiliacs, no systematic study was found to document the quality of life in a potentially HIV infected child with hemophilia. Empirical studies on the quality of life in children with hemophilia could not be located. Research on boys with hemophilia frequently focused on behaviors, academic achievements, peer interactions and emotions.<br/><br/><br/><br/>This two group comparative study explored the quality of life of children with hemophilia. Variables measured related to the child, family environment and support networks. Attitude and self-esteem were measured by the child's self-report. Proxy measures consisting of the parent's response were used to measure the child's quality of life, behavior, coping, the family environment, and perceived quality and nature of support received. All of the child/parent dyads from a comprehensive hemophilia clinic, who met the study criteria were invited to participate. A response rate of 42 percent (n=17) was obtained from the hemophilia clinic. A convenience sample of well child/parent dyads were selected from a private pediatric practice to participate as the comparison group. The response for this group was 58 percent (n=24).<br/><br/><br/><br/>The data were analyzed using descriptive statistics, comparison of means, independent t-tests and measures of association. The majority of the children in the hemophilia group were HIV seropositive. Responses on the instruments indicated that most families of children with hemophilia perceived themselves similar to the general population, yet children perceived themselves as being picked on more often than their healthy peers. Significant differences were found between responses of families with healthy children and families with children with hemophilia in the areas of family conflict and activities. Strong relationships were obtained between the parent's perception of the child's quality of life rating and: (1) the child's behavior, (2) family conflict, (3) organization and (4) activities. These relationships were only present in families with children with hemophilia. Thus, the parent's perception of the child's quality of life was similar for both groups, either because of an effective support program at the care facility or because no differences exist. Future research focused on developing a measure of child quality of life and interventions to reduce family conflict and promote family activity is suggested.</td></tr></table>en_GB
dc.date.available2011-10-26T13:22:45Z-
dc.date.issued1992-08-06en_GB
dc.date.accessioned2011-10-26T13:22:45Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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