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Skydda och frigöra: en studie av föräldrar till barn med astma och av professionella vårdare
Umeå University, Faculty of Medicine, Nursing.
2005 (Swedish)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Protecting and liberating : a study of parents of children with asthma and professional caregivers (English)
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 [en]
Nursing, parent, asthma, gender, family relations, uncertainty, strategies, professional caregivers, adolescence, phenomenological research, grounded theory, quality of life
Keyword [sv]
Omvårdnad
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-497ISBN: 91-7305-840-8 (print)OAI: oai:DiVA.org:umu-497DiVA: diva2:143614
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
List of papers
1. Being the parent of a child with asthma.
Open this publication in new window or tab >>Being the parent of a child with asthma.
2001 (English)In: Pediatric Nursing, ISSN 0097-9805, Vol. 27, no 4, 365-373 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study is to describe what it means to be parents of a child with asthma. Unstructured interviews were carried out with 12 mothers and 12 fathers of children with asthma living in Sweden. The parents' accounts were analyzed using a phenomenological-hermeneutic approach. The results revealed that parents were living a strenuous life and their actions involved both protecting and liberating. Parents also reported feelings of sadness and acceptance. In most cases, mothers acted in a protecting manner and expressed feelings of sadness; fathers acted in a liberating manner and expressed feelings of acceptance. To gain a deeper understanding of the parents' actions and feelings, study results were interpreted through philosophical perspectives described by Ruddick (1989), Mayeroff (1965), and Hegel (1975). These interpretations show that the feelings and actions of these parents exist in a dialectical relation with one another. Results emphasize the importance of a good partnership between the parents and the nurse, where the nurse shows consideration for the parents' unique actions and feelings and understands and supports parents in the care of their child with asthma.

Identifiers
urn:nbn:se:umu:diva-4486 (URN)12025274 (PubMedID)
Available from: 2005-04-09 Created: 2005-04-09Bibliographically approved
2. Having a child with asthma: quality of life for Swedish parents
Open this publication in new window or tab >>Having a child with asthma: quality of life for Swedish parents
Show others...
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.

Keyword
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
Identifiers
urn:nbn:se:umu:diva-6661 (URN)10.1046/j.1365-2702.2003.00825.x (DOI)15009341 (PubMedID)
Available from: 2008-01-09 Created: 2008-01-09 Last updated: 2009-11-10Bibliographically approved
3. Relations governed by uncertainty: part of life of families of a child with asthma.
Open this publication in new window or tab >>Relations governed by uncertainty: part of life of families of a child with asthma.
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.

Keyword
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:nbn:se:umu:diva-6704 (URN)10.1016/S0882-5963(03)00140-4 (DOI)15077206 (PubMedID)
Available from: 2007-12-17 Created: 2007-12-17 Last updated: 2009-11-10Bibliographically approved
4. Assisting teens with asthma to take command.
Open this publication in new window or tab >>Assisting teens with asthma to take command.
2006 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 2, 193-201 p.Article in journal (Refereed) Published
Abstract [en]

To meet and work with teenagers may be a challenge for caregivers as adolescence is a period when youths try to establish autonomy. Although asthma is an increasing problem worldwide, few studies have addressed professional caregivers' motives and actions. Therefore, the aim of this study was to describe professional caregivers' strategies in their work with teenagers with asthma. Grounded theory, inspired by Glaser, was used to uncover the phenomenon. The informants were seven professional caregivers who worked at an eight-day asthma camp for teenagers in Sweden. Participant observations and interviews were used, and the first author collected the data and participated in the activities. Findings show that professional caregivers' core concern is to assist teenagers with asthma to take command. This core concern gives rise to five strategies: showing respect, being at hand, promoting own responsibility, promoting to exceed boundaries and promoting reflections. In professional caregivers' attempt to assist teenagers to take command some differences are seen in the way they support boys and girls. One conclusion drawn from our study is that the provisional theory of 'Assisting teenagers with asthma to take command' is not only suitable for professional caregivers working at asthma camps; it may, in some degree, also be used as a source of inspiration for professional caregivers in other settings.

Identifiers
urn:nbn:se:umu:diva-27067 (URN)10.1111/j.1471-6712.2006.00389.x (DOI)16756525 (PubMedID)
Available from: 2009-11-10 Created: 2009-11-10 Last updated: 2017-12-12

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