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- Dalheim-Englund, Ann-Charlotte, et al.
(author)
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Getting along with disease-engendered uncertainty in asthma child families
- 2006
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In: New Developments in Parent-Child Relation. - : New York: Nova Science Publishers. - 1600211704
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Book chapter (other academic/artistic)abstract
- All communities set high expectations on parents and to raise a child is a challenging responsibility. Being a parent includes feelings of pleasure, but is also associated with concem and extra work. If the child is stricken by a chronic illness their concem and extra work more often than not will increase. One of the most common chronic diseases among children world-wide is asthma and it constitutes a considerable health problem. Current literature shows that asthma brings uncertainty and extra work to family life, which influences many aspects of a farnily's health and social life. In a Swedish study, it is found that mothers and fathers of children with asthma manage their uncertainty in different ways - mothers mostly act in a protecting manner and express feelings of sadness, while fathers act in a liberating manner and express feelings of acceptance. Furthermore, another Swedish study points out the fact that the relations among asthma family members are govemed by uncertainty and characterized by control, tight bonds and feelings of being forsaken and lack of understanding. From the literature and studies mentioned above, one can assume that living under such circumstances may not only affect family members' present life, but it may also affect their future. Uncertainty puts a great drain on the family, e.g. misunderstanding between parents can occur, siblings may feel forsaken and the child with asthma may be prevented from taking an own responsibility for life with the disease. One way to get a deeper understanding of human relations is to use different perspectives. In this article, we will try to illurninate asthma family life and relations by using an existentialistic, a Hegelian as well as a gender perspective.
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| 4. |
- Rydström, Ingela, et al.
(author)
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Asthma--quality of life for Swedish children.
- 2005
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 14:6, s. 739-749
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Journal article (peer-reviewed)abstract
- AIMS AND OBJECTIVES: The purpose of this study was to describe how Swedish children with asthma experience their QoL and to search for possible associations between their experience of QoL and some determinants. BACKGROUND: Asthma is a chronic disorder that can restrict a child's life, physically, emotionally, socially and spiritually, and this has an impact on a child's quality of life (QoL). METHODS: Two hundred and twenty-six children with asthma (37% girls and 63% boys) and 371 parents of these children participated in the study. The Paediatric Asthma Quality Of Life Questionnaire (PAQLQ) was used to measure the children's QoL. This questionnaire reveals how the children's asthma interferes with their normal activities, their symptoms and how this interference has made them feel. RESULTS: The findings show that most children with asthma estimated their QoL towards the positive end of the scale. The children reported more impairment in the domain of activities than in emotions and symptoms. The most commonly restricted activity was the children's ability to run. Significant associations were found between a higher QoL outcome and being a boy, as well as living in the south of Sweden. A higher QoL was also found in children with mothers older than 40 years of age and in children with cohabiting parents. It was also associated with their fathers' QoL in a positive direction. CONCLUSIONS: It is important that children with asthma will maintain a high QoL. In this study the children were being treated with asthma medication when they evaluated their QoL. Perhaps this fact might have influenced the results in a positive direction. RELEVANCE TO CLINICAL PRACTICE: The findings of our study underline the importance of accurate nursing assessment including background variables of the children. Nurses also have to be aware that some of the children in the study have a low QoL and these children must not be forgotten. In addition, as caring tends to focus on the patients' limitations, another important issue for nurses is to try to discover those aspects in a child's daily life that contribute to a high QoL in order to improve and maintain the child's wellbeing.
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| 5. |
- Rydström, Ingela
(author)
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"Jag vill också ha en hund ..." : en studie av barn och tonåringar med astma och deras mammor
- 2005
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Doctoral thesis (other academic/artistic)abstract
- 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.
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| 7. |
- Rydström, Ingela, et al.
(author)
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Not letting the disease get the upper hand over life : strategies of teens with asthma
- 2005
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In: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd.. - 0283-9318 .- 1471-6712. ; 19:4, s. 388-395
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Journal article (peer-reviewed)abstract
- Adolescence is a period when teens normally revolt against being dependent. For teens with asthma this period may be even more difficult to deal with, as they also have to deal with their illness. Since few studies describe this phenomenon, the aim of this study was to provide a theoretical understanding of how teens with asthma manage their everyday life in relation to their disease. A grounded theory research design, according to Glaser, was used to uncover the phenomenon. The study was undertaken at a camp for teenagers with asthma during the summer of 2003. Twelve girls and 11 boys with moderate to severe asthma participated in the study. Participant observations and interviews were used, and the first author collected the data and participated in the activities. The findings reveal a theoretical model which shows that teens' core concern is not to let the disease get the upper hand over life. To manage this core concern the teens were found to use three strategies: keeping a distance to the disease, challenging the disease and taking the disease into consideration. Boys mainly kept a distance to the disease while girls mainly kept the disease into consideration. Challenging the disease seemed to be a strategy used by both girls and boys. The teens' strategies were not studied close to their everyday life, but a conclusion drawn from our study was that the provisional theory in many respects can be transferred to their everyday life, even though further research is needed to develop this provisional theory in other settings
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