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Having a child with asthma: quality of life for Swedish parents
Umeå University, Faculty of Medicine, Nursing.
Umeå University, Faculty of Medicine, Nursing.
Umeå University, Faculty of Medicine, Nursing.
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2004 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, Vol. 13, no 3, 386-395 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. AIM AND OBJECTIVE: The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. METHOD: A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. RESULTS: The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. CONCLUSIONS: The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.

Place, publisher, year, edition, pages
2004. Vol. 13, no 3, 386-395 p.
Keyword [en]
Adolescent, Adult, Asthma/*psychology, Child, Cross-Sectional Studies, Female, Humans, Logistic Models, Male, Middle Aged, Parents/*psychology, Prospective Studies, Quality of Life, Questionnaires, Statistics; Nonparametric, Sweden
URN: urn:nbn:se:umu:diva-6661DOI: 10.1046/j.1365-2702.2003.00825.xPubMedID: 15009341OAI: diva2:146331
Available from: 2008-01-09 Created: 2008-01-09 Last updated: 2009-11-10Bibliographically approved
In thesis
1. Skydda och frigöra: en studie av föräldrar till barn med astma och av professionella vårdare
Open this publication in new window or tab >>Skydda och frigöra: en studie av föräldrar till barn med astma och av professionella vårdare
2005 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
Protecting and liberating : a study of parents of children with asthma and professional caregivers
Abstract [en]

Aim: The overall aim of this thesis is, from the point of view of parents of a child with asthma, to describe meanings of being a parent, parents’ quality of life, and to describe how family relations are influenced by their child’s disease. The aim is also to increase the understanding of what strategies professional caregivers use in their work with teenagers suffering from asthma.

Methods: Informants in the three qualitative studies were 29 parents (17 mothers and 12 fathers) of children with asthma and 7 professional caregivers. Informants in a quantitative quality of life study were 371 parents. The data collections were undertaken by means of interviews, observations and a questionnaire. The data was analysed by means of a phenomenological-hermeneutic method, grounded theory and statistics.

Results: A meaning of being a parent of a child with asthma is to live a strenuous life and to fear that the child might die during a severe asthma attack. The parents’ actions involve both protecting and liberating and their feelings involve sadness as well as acceptance. Mostly the mothers act in a protecting manner and express feelings of sadness. The fathers mostly act in a liberating manner and express feelings of acceptance. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers describe that feelings of uncertainty always are present owing to the unpredictability of the disease. These feelings make the mothers more or less available for family members. For the child with asthma the mothers’ experience that they are always available. Thus, control and tight bonds characterize the mother-child relationships. The mothers’ constant availability for the child with asthma is experienced to lead to a decreased availability for other family members and theses relationships are characterised by feelings of forsakenness and lack of understanding. However, when parents of children with asthma estimate their quality of life by a questionnaire, they estimate it as comparatively high. In the same family the parents scoring of separate items was to a large extent similar. The result also shows that professional caregivers’ central concern is to assist teenagers with asthma to conquer life. This gives rise to five strategies: showing respect, being at hand, promoting personal sense of responsibility, promoting exceeding boundaries, and promoting reflections. In professional caregivers’ attempt to assist teenagers to conquer life some differences are seen in the way they support boys and girls.

Conclusion: One conclusion drawn from this thesis is that being a parent of a child with asthma involves feelings of uncertainty. In meeting the parents in question, caregivers should reflect upon these feelings and consider how the parents could be assisted. As mothers and fathers describe different attitudes in relation to the care of the child, it is also important to reflect upon how professional caregivers can assist the balance between the mothers’ protecting and the fathers’ liberating attitudes. It is also important for professional caregivers to reflect upon how they meet teenage girls and boys with asthma respectively, and to take their needs and understanding of the situation into consideration.

Place, publisher, year, edition, pages
Umeå: Omvårdnad, 2005. 87 p.
Umeå University medical dissertations, ISSN 0346-6612 ; 948
Nursing, parent, asthma, gender, family relations, uncertainty, strategies, professional caregivers, adolescence, phenomenological research, grounded theory, quality of life, Omvårdnad
National Category
Research subject
Caring Sciences
urn:nbn:se:umu:diva-497 (URN)91-7305-840-8 (ISBN)
Public defence
2005-04-14, Aulan, Vårdvetarhuset, Umeå, 09:00 (English)
Available from: 2005-04-09 Created: 2005-04-09 Last updated: 2009-11-10Bibliographically approved

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