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Parents' experiences of asthma: process from chaos to coping.
Nordic Council of Ministers, Nordic School of Public Health NHV.
Institutt for helsefag, Det samfunnsvitenskapelige fakultet, Universitetet i Stavanger, Norway.
2004 (English)In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 6, no 2, p. 93-9Article 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.

Place, publisher, year, edition, pages
2004. Vol. 6, no 2, p. 93-9
Keywords [en]
asthma; coping; nursing; parents; qualitative
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3746DOI: 10.1111/j.1442-2018.2004.00179.xPubMedID: 15130094OAI: oai:DiVA.org:norden-3746DiVA, id: diva2:787049
Available from: 2015-02-09 Created: 2015-02-09 Last updated: 2017-12-04Bibliographically approved
In thesis
1. Barn med astma og deres foreldre: læring, deltakelse og samarbeid
Open this publication in new window or tab >>Barn med astma og deres foreldre: læring, deltakelse og samarbeid
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. p. 78
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2012:4
Keywords
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, 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:nbn:se:norden:org:diva-3750 (URN)978-91-86739-32-4 (ISBN)
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

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