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Barn med astma og deres foreldre: læring, deltakelse og samarbeid
Nordic Council of Ministers, Nordic School of Public Health NHV.
2012 (Norwegian)Doctoral thesis, comprehensive summary (Other academic)
Abstract [no]

Bakgrunn og hensikt: Astma er den hyppigste kroniske sykdommen i barnealderen, den påfører barn og familierpersonlige og sosiale påkjenninger samtutgjør et betydelig folkehelseproblem. For å handtere hverdagen trenger barna og foreldrene kunnskap. Det overgripende målet med avhandlingen er å utvikle læringstilbud til barn og foreldre der den pedagogiske tilnærmingen tar utgangspunkt i barns, foreldres og helsepersonells vurderinger om hva som er viktig å lære.

Metode: Avhandlingen inkluderer 5 studier (I–V) ut fra 2 prosjekter som forgikk på en barneavdeling i Norge, i 1995–1998 og 2004–2007. I studie I og IIble hermeneutisk fenomenologi brukt der 9 foreldre deltok i dypintervju. I studie IIIble innholdsanalyse brukt i et aksjonsforsknings prosjekt, handlings-orientert forskningssamarbeid, der 90 personer deltok. I studie IV ble hermeneutisk fenomenologi brukt der 15 barn i alderen 7–10 år tegnet og deltok i dypintervju. I studie V ble innholdsanalyse brukt der samhandlingen mellom 3 barn og 2 helsepersonellble observerti et læringstilbud.

Resultateneviser at både barn med astma og foreldrene erfarte engstelse og redsel i hverdagen (I,IV). Foreldrene uttrykte følelser av usikkerhet,hjelpeløshet og skyld (I). Barna var redde for forverrelser av astmaenog hvordan sykdommenpåvirket kroppen. De brukte mange forskjellige ord når de beskrev astma.De kjente astma i hele kroppenogsituasjonenkunne endre seg raskt fra vanliglek til at all energi var borte. Barna var redde for å bli utestengt fra lek og aktivitet, og opplevde det som et dilemma om de skulle fortelle om astmaen til andre eller holde det hemmelig(V). Både barn og foreldre erfarte det å dele erfaringer i gruppe som betydningsfullt (II, V). Barnas perspektiv og deltakelse ble ivaretatt gjennom intervensjonsfasen, mens barneperspektivet ble ivaretatt av voksne gjennom hele prosjekt 2 (III). I læringstilbudet kjente barna seg trygge, var aktive, lærte av hverandre og satte ord på egne følelser(IV). Fortellinger og bilder fungerte godt i pedagogisk tilnærming til barn. Barnas egne tegninger var et godt redskap for å kommunisere med barn og for å få tilgang til deres livsverden(V).

Konklusjon: Denne avhandlingen viser at for å støtte barn og foreldre til å handtere astma i hverdagen, er det viktig at helsepersonell legger tilrette for læring ved å utforme læringstilbud som tar utgangspunkt i deres perspektiver. Det at barna selv er aktive, at deres egne erfaringer brukes og verdsettes i dialogen, viser et nedenfraperspektiv som er en god kilde til empowerment-prosesser. Slike prosesser styrker barna i troen på egne krefter og gir dem handlekompetanse. Læringsprosessene som er beskrevet i meningsfull læringvil styrke barnas begripelighet, handterbarhet og meningsfullhet og derved styrke barnas Sense of Coherence (SOC). Ved styrket SOC vil barna i større grad mestre utfordringer i livet og derved oppnå bedre helse og livskvalitet

Abstract [en]

Background and aim: Asthma is the most common chronic childhood disease,many children and families are personally and socially affected which makes asthma a public health problem. The overall aim of this thesis was to develop an asthma education programme for children with asthma and their parents, where the pedagogic approach takeschildren’s, parents’and health care personnel’s experiences and views as a starting point.

Methods: This thesis includes 5 studies (I–V) from 2 projects performed in a paediatric ward in Norway in 1995–1998 and 2004–2007. In studies I and IIa hermeneutic phenomenological approach was used, in which 9 parents participated in qualitative research interviews. In study III, 90 persons participated in a co-operative inquiry. Data were analysed by content analysis. Study IV used a hermeneutic phenomenological approach: 15 children (7–10 years of age) participated in qualitative research interviews. In study V, 3 children and 2 health care personnel participated in an observational study. Content analysis was used in the analysis.

The results showed that both the children and the parents experienced fear in their experiences of asthma in everyday life (I, IV). The parents expressed feelings of uncertainty, helplessness and guilt (I). The children experienced fear of exacerbations and how the asthma affected their bodies. They used many different words when they described how asthma affected them. They felt asthma in their whole body,and the condition could change quickly. The fear of being ostracised concerned all aspects of the children’s livesand they related a dilemma of keeping the asthma secret or being open about it (V). Sharing experiences in group settings was experienced as meaningful to both children and parents (II, V). The adult’s child perspectives were taken into account throughout the project, while the children’sown perspectives were taken into account during the period of intervention (III). During the asthma education programmethe children actively participated and learned from each other. As the pictures and stories were related to their experiences made it easier for them to express their own feelings. Drawings were a good way toinitiate a dialogue with the children and to get access to their lifeworld (V).

Conclusion: This thesis shows that in order to support children and parents to cope with asthma, it is crucial to build on their perspectives in learning processes. Active involvement of the children shows a bottom-up perspective that can lead to confidence in their own strength and empowerment. Overall, this approach corresponds to an educational approach and learning theory that takes meaningful learning into account. Meaningful learning strengthens children’s comprehensibility, manageability and meaningfulness and their Sense of Coherence (SOC). A strong SOC leads to better health and a better quality of life

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden , 2012. , 78 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2012:4
Keyword [en]
Action research, asthma, child, co - operative inquiry, empowerment, experiences, drawings, health promotion, hermeneutic phenomenology, meaningful learning, parents, partic i pation, qualitative approach, sense of coherence
Keyword [no]
A stma, aksjonsforskning, barn, deltakelse, empowerment, erfaringer, foreldre, handli n gs - orientert forsknin gssamarbeid, health promotion, hermeneutisk fenomenologi, kvalit a tiv tilnærming, meningsfull læring, sense of coherence, tegninger
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3750ISBN: 978-91-86739-32-4 (print)OAI: oai:DiVA.org:norden-3750DiVA: diva2:787060
Public defence
2012-06-01, Nordic School of Public Health NHV, Göteborg, Sweden, 13:00 (Norwegian)
Opponent
Supervisors
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2015-02-09Bibliographically approved
List of papers
1. Children’s participation and experiential reflections using co-operative inquiry for developing a learning programme for children with asthma
Open this publication in new window or tab >>Children’s participation and experiential reflections using co-operative inquiry for developing a learning programme for children with asthma
2014 (English)In: Action Research, ISSN 1476-7503, E-ISSN 1741-2617, Vol. 12, no 3, 315-336 p.Article in journal (Refereed) Published
Abstract [en]

Action research is potentially a useful method for changing clinical practice by involvingpractitioners in the process of change. The aim of this study was to explore the utility ofaction research in bridging the gap between research and practice. Diabetes educatorsin collaboration with researchers developed and implemented a participatory, group-based diabetes education program in a diabetes clinic in the Danish health care system.The research process included a variety of qualitative methods: workshops, classroomobservations, video recordings and semi-structured interviews. These methods aimedat obtaining contextual sensitivity, allowing dynamic interactions with educators andpeople with diabetes. Despite challenges, the study demonstrates how action researchmethods contribute to development and change of diabetes education practice whilesimultaneously adding knowledge to the action research community

Keyword
Action research, change, patient education, type 2 diabetes
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3745 (URN)0.1177/1476750314534453 (DOI)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved
2. Children's experiences of living with asthma: fear of exacerbations and being ostracized.
Open this publication in new window or tab >>Children's experiences of living with asthma: fear of exacerbations and being ostracized.
2011 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 26, no 4, 295-303 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to explore children's experiences of asthma to tailor a learning program based on their perspectives. Fifteen children (7-10 years) were interviewed, and they narrated the meaning behind their drawings; a phenomenological hermeneutical approach was used in the analysis. The findings are described in two themes with five subthemes: fear of exacerbation (bodily sensations, frightening experiences, and loss of control) and fear of being ostracized (experiences of being excluded and dilemma of keeping the asthma secret or being open about it). Drawings are a good tool for initiating a dialogue with children.

Keyword
Child health; Asthma; Drawings; Qualitative research; Health promotion
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3748 (URN)10.1016/j.pedn.2010.05.003 (DOI)21726779 (PubMedID)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved
3. Children's experiences of a participation approach to asthma education.
Open this publication in new window or tab >>Children's experiences of a participation approach to asthma education.
2013 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 7-8, 996-1004 p.Article in journal (Refereed) Published
Abstract [en]

AIM AND OBJECTIVES: To explore the participation and responses of children to an asthma education programme that was developed with the aid of children with asthma. In a larger perspective, the aim was to understand how educational approaches can be designed to help children learn to live and cope with asthma.

BACKGROUND: A literature search showed that programmes where children participate in the development of educational materials or programmes are lacking.

DESIGN: An exploratory descriptive design was chosen to get an in-depth understanding of the communication and collaboration between children and healthcare personnel.

METHODS: Data were collected through observations, tape recordings of the conversations and notes of the interactions between the children and the healthcare personnel and analysed by content analysis.

RESULTS: The significance of the asthma education programme emerged in four themes: (i) children are learning from each other: in a positive learning climate, the children were able to express emotional themes that they may not have communicated before; (ii) children are learning through an interaction with the educational material: the children discussed stories and pictures in a fellow interplay: when one child expressed something, another child would recognise it and continue the story; (iii) children are learning from their interaction with healthcare personnel and vice versa: adjusting the vocabulary according to the children's experiences, they were met on their level of understanding; and (iv) children can express and discuss their understanding of asthma.

CONCLUSIONS: The unique aspect about this programme is that it emanates from children's perspectives. The children were actively involved and learnt from each other's shared knowledge and experiences, which is a good source of meaningful learning and empowering processes.

RELEVANCE TO CLINICAL PRACTICE: Future educational approaches should use children's perspectives in a manner in which their questions, thoughts and daily challenges are emphasised.

Keyword
asthma; child; empowerment; health education; health promotion; learning; participation; qualitative
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3749 (URN)10.1111/jocn.12069 (DOI)23311685 (PubMedID)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved
4. Parents' experiences of asthma: process from chaos to coping.
Open this publication in new window or tab >>Parents' experiences of asthma: process from chaos to coping.
2004 (English)In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 6, no 2, 93-9 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the present qualitative study was to describe nine parents' everyday experiences of living with a child suffering from asthma. Data were collected by means of in-depth interviews and phenomenological content analysis. Four main themes emerged: feelings of uncertainty, helplessness and guilt; the need for support and help from healthcare professionals; adaptation to everyday life; and the development of coping strategies. In addition, two subthemes; trying out and seeking information, emerged. Trying out was found to be an important strategy for parents in managing the illness. In encounters with healthcare professionals, parents felt that they were not respected and that their competence was questioned. In conclusion, this study emphasizes the importance of a mutual dialogue between healthcare professionals and parents to enable the parents to develop the competence necessary to care for their child.

Keyword
asthma; coping; nursing; parents; qualitative
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3746 (URN)10.1111/j.1442-2018.2004.00179.x (DOI)15130094 (PubMedID)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved
5. Influence of an asthma education program on parents with children suffering from asthma.
Open this publication in new window or tab >>Influence of an asthma education program on parents with children suffering from asthma.
2005 (English)In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 7, no 3, 157-63 p.Article in journal (Refereed) Published
Abstract [en]

Several studies have evaluated the effectiveness of various methods of asthma education for parents. This study adds a qualitative and inner perspective from the families of children suffering from asthma. The aim was to illuminate the influence of an asthma education program (AEP) for parents. The study sample consisted of nine parents of five children with moderate to severe asthma in the 2-6 years age group. Data were collected by interviews and qualitative analyses were used. The main findings were that the parents experienced an increased understanding of their child's experience of asthma after having participated in the program. Three themes were revealed: sharing experiences, accepting the illness, and partnership building. In conclusion, the parents in the study expressed that they promote increased self-understanding by meeting other parents in groups.

Keyword
asthma; educational program; empowerment; parents; qualitative
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3747 (URN)10.1111/j.1442-2018.2005.00235.x (DOI)16083478 (PubMedID)
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved

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