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Relations governed by uncertainty: part of life of families of a child with asthma.
Umeå University, Faculty of Medicine, Nursing.
Umeå University, Faculty of Medicine, Nursing.
Umeå University, Faculty of Medicine, Nursing.
2004 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, Vol. 19, no 2, 85-94 p.Article in journal (Refereed) Published
Abstract [en]

This study identifies what influences and characterizes family relations in families of a child with asthma. Seventeen mothers of children aged between 6 and 16 years participated in audio-taped in-depth interviews. The researchers were inspired by grounded theory in data collection and data analysis. The core category that developed was being governed by disease-engendered uncertainty. The category mothers' availability was seen in two dimensions. The first dimension, mothers' being available for the child with asthma, created two subcategories: 1. control and 2. tight bonds. The second dimension, mothers' being less available for other family members, also created two subcategories: 3. being forsaken and 4. lack of understanding. Nursing implications are discussed in relation to the findings.

Place, publisher, year, edition, pages
2004. Vol. 19, no 2, 85-94 p.
Keyword [en]
Adolescent, Adult, Asthma/*nursing, Caregivers, Child, Cost of Illness, Family Relations, Female, Health Knowledge; Attitudes; Practice, Humans, Interpersonal Relations, Male, Mother-Child Relations, Object Attachment, Qualitative Research, Quality of Life, Sweden
Identifiers
URN: urn:nbn:se:umu:diva-6704DOI: 10.1016/S0882-5963(03)00140-4PubMedID: 15077206OAI: oai:DiVA.org:umu-6704DiVA: diva2:146374
Available from: 2007-12-17 Created: 2007-12-17 Last updated: 2009-11-10Bibliographically approved
In thesis
1. "Jag vill också ha en hund ...": en studie av barn och tonåringar med astma och deras mammor
Open this publication in new window or tab >>"Jag vill också ha en hund ...": en studie av barn och tonåringar med astma och deras mammor
2005 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
"I also want a dog ..." : a study of children and teenagers with asthma and their mothers
Abstract [en]

Aim: The overall aim of this thesis is to illuminate meanings of being a child with asthma, to describe what strategies they use to manage their daily life, and how they estimate their quality of life. The aim is also to describe how family relations might be influenced by the child’s asthma disease.

Methods: Informants in three qualitative studies were 37 children with asthma and 17 mothers of children with asthma. Informants in a quantitative quality of life study were 226 children with asthma. The data collections were undertaken by means of interviews, observations, and a questionnaire (PAQLQ). The data was analysed by means of phenomenological-hermeneutic method, grounded theory, and statistics.

Results: A meaning of being a child with asthma is to strive to live a normal life, which means to be able to participate in the same activities as healthy friends. According to the children, participation is facilitated by confidence in one’s own knowledge, by other people’s wish to help, and by confidence in medicines. On occasions when the disease becomes an obstacle to participation, the children feel like outsiders, and talk about feelings of deprivation, guilt, loneliness, anxiety, and fear. When observing and interviewing teenagers with asthma they showed and expressed that their core concern was not letting the disease get the upper hand over life. To manage this core concern they used three strategies: keeping a distance to the disease, challenging the disease, and taking the disease into consideration. Boys mainly keep a distance to the disease while girls mainly take the disease into consideration. Challenging the disease seems to be a strategy used by both girls and boys. Differences between girls and boys were also seen when children with asthma estimated their quality of life, even though they both estimate their quality of life as comparatively high. A significant association was found between a higher quality of life and being a boy, compared to being a girl. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers experience themselves as always being available for the child with asthma, owing to the unpredictability of the disease. Control and tight bonds therefore characterize the relation between the mother and the sick child. Being constantly available for the child with asthma, decreases the mothers’ availability for other family members and these relations are described as being characterised by feelings of being forsaken and lack of understanding.

Conclusion: One conclusion drawn from this thesis is that life with asthma includes moments of wellbeing for both children with asthma and their mothers, but also moments when they experience that the disease gets the upper hand over life. In assisting them it is of great value to create a milieu where the individuals dare to talk about their experiences and to be aware of possible differences between boys and girls. It is also important never to judge, but to customize care, based on the needs of each individual.

Place, publisher, year, edition, pages
Umeå: Omvårdnad, 2005. 83 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 949
Keyword
Nursing, child, adolescence, asthma, quality of life, gender, strategies, pets, family, relations, phenomenological research, grounded theory, Omvårdnad
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-496 (URN)91-7305-841-6 (ISBN)
Public defence
2005-04-14, Aulan, Vårdvetarhuset, Umeå, 13:00 (English)
Opponent
Supervisors
Available from: 2005-04-09 Created: 2005-04-09 Last updated: 2009-11-27Bibliographically approved
2. 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.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 948
Keyword
Nursing, parent, asthma, gender, family relations, uncertainty, strategies, professional caregivers, adolescence, phenomenological research, grounded theory, quality of life, Omvårdnad
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-497 (URN)91-7305-840-8 (ISBN)
Public defence
2005-04-14, Aulan, Vårdvetarhuset, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2005-04-09 Created: 2005-04-09 Last updated: 2009-11-10Bibliographically approved

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