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Siblings of children with cystic fibrosis: quality of life and the impact of illness
- Authors:
- HAVERMANS T., et al
- Journal article citation:
- Child: Care, Health and Development, 37(2), March 2011, pp.252-260.
- Publisher:
- Wiley
The objective of this research, undertaken in Belgium, was to investigate the impact of cystic fibrosis on siblings of a child with the illness and their self-reported quality of life. In the study, 39 siblings aged 10-18 years recruited from 2 cystic fibrosis centres in Leuven and Brussels completed the Child Health Questionnaire and the Sibling Perception Questionnaire. Analysis of the results showed that siblings of children with cystic fibrosis rated their quality of life higher than siblings of healthy children on most domains, indicating that living with cystic fibrosis does not necessarily have a negative effect on siblings' quality of life. However, the study also found that older siblings reported lower self-esteem, indicating a higher impact of the illness. The researchers note that perception of the impact of cystic fibrosis on siblings and their quality of life is related to some indices of illness severity. They suggest that insight into sibling issues helps cystic fibrosis teams to provide family oriented care.
Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions
- Authors:
- HEGARTY M., et al
- Journal article citation:
- Child: Care, Health and Development, 35(4), July 2009, pp.462-468.
- Publisher:
- Wiley
The Cystic Fibrosis Questionnaire-Revised version (CFQ-R) was used to evaluate age/gender effects on quality of life (QOL) in Australian young people with cystic fibrosis (CF) who were inpatients/outpatients aged 6–18 years. Parent/child agreement was also examined. The CFQ-R was completed by 18 outpatients, and 15 inpatients at admission for an acute pulmonary exacerbation to a tertiary hospital, Brisbane, Australia, as well as by parents of those aged 6–13 years. Inpatients scored significantly lower than outpatients for the CFQ-R domains 'emotional state', 'social', 'body image' and 'respiratory symptoms'. Young people aged 6–13 years scored significantly better than those aged 14–18 years for 'emotional state', 'body image' and 'treatment burden'. Women perceived less 'treatment burden' than did men. Young people aged 6–13 years perceived less 'treatment burden' than did their parents. A significant interaction occurred between child/parent report and gender for 'emotional state' and 'eating disturbances'. the authors conclude that the CFQ-R found differences between inpatients and outpatients and between younger and older paediatric patients with CF, and between parent and child perceptions of QOL.
Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis
- Authors:
- HAVERMANS T., et al
- Journal article citation:
- Child: Care, Health and Development, 32(1), January 2006, pp.1-7.
- Publisher:
- Wiley
Cystic fibrosis (CF) is the most common life-shortening autosomal-recessive condition, affecting approximately 1500 persons in Belgium. CF affects the functions of many organs, with its greatest effects on the lungs and on pancreatic exocrine function. Treatment of the disease involves a multi-component regimen, including airway clearance techniques, aerosol medications, inhalers, antibiotics, pancreatic enzymes and increased caloric intake. Doctors and healthcare workers need to obtain a lot of information about medical and psychosocial aspects in order to provide the patient with the best possible and most suitable care. In the past 15 years, health-related quality of life (HRQOL) has become of major interest in health psychology, and HRQOL measures have enabled healthcare workers to obtain a better understanding of the impact of the illness and its treatment on patients' lives. The purpose of the present study was to evaluate parent–child concordance on assessing HRQOL in children with CF using the validated cystic fibrosis questionnaire (CFQ).
The experience of receiving a diagnosis of Cystic Fibrosis after age 20: implications for social work
- Author:
- WIDERMAN Eileen
- Journal article citation:
- Social Work in Health Care, 39(3/4), 2004, pp.415-433.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Using the phenomenological approach of Van Manen, this study explored the lived experience of receiving a diagnosis of cystic fibrosis as an adult. Ten essential themes were generated from the stories of 36 participants: Awareness of Death, Change, Difference, Distraction, Family Indifference, Intrusion, Isolation, Normalizing, Time, and Uncertainty. Themes associated with gender, illness severity, and medical care were also developed. Although themes were similar to those in the chronic illness literature, late-diagnosis of CF was found to be a unique experience. Participants sought personal relationships with caregivers and educational materials targeted to their needs. Implications for social work are discussed. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580)