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Erfarenheter av stöd bland föräldrar till barn med medfödda hjärtfel
Umeå University, Faculty of Medicine, Department of Nursing.
2014 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Bakgrund. Antalet överlevande barn som diagnostiserats med medfött hjärtfel (CHD) har ökat markant de senaste 15 åren, vilket har bidragit till en växande grupp av barn och familjer som behöver specialiserat stöd, eftersom familjelivet påverkas och begränsas av CHD. Studier har visat att föräldrar till barn med CHD har en ökad risk för psykosocial sjuklighet i jämförelse med föräldrar till barn med andra sjukdomar eller föräldrar till friska barn. Få studier har belyst föräldrars erfarenheter av stöd när de har barn med CHD. Därför fokuseras denna avhandling på föräldrarnas perspektiv av fenomenet stöd, för att öka förståelsen för vad stöd innebär för föräldrar till barn med CHD.

Syfte. Avhandlingens syfte är att belysa innebörder i den levda erfarenheten av stöd, hos föräldrar till barn med CHD samt att till svensk kontext anpassa och validera ett familjecentrerat instrument för föräldrars skattning av stöd till hela familjen från sjuksköterskor.

Metoder. Avhandling består av fyra delstudier. I tre av dessa (I, II, III) genomfördes datainsamlingen genom narrativa intervjuer, som tolkades genom fenomenologisk hermeneutisk tolkningsmetod. I den fjärde delstudien gjordes en översättning och psykometrisk testning av det isländska instrumentet ICE-FPSQ till svensk kontext. Dessutom beskrevs föräldrars skattning av uppfattat stöd från sjuksköterskor till familjer som har barn med CHD.

Resultat. Fynden från delstudie I visade att innebörder i den levda erfarenheten av stöd hos föräldrar till tonåringar med CHD var stöd för att själva kunna vara stödjande för sin familj, men också för andra personer i tonåringens omgivning. Delstudie II visade att innebörder i den levda erfarenheten av stöd för mödrar till yngre barn med CHD var att få stöd så att de själva kunde hantera sin egen oro och sitt familjeliv. Delstudie III visade att innebörder i den levda erfarenheten av stöd för fäder till yngre barn med CHD var önskan att få stöd genom delande relationer med familjen och att bli involverad i vården av sitt barn. Den fjärde delstudien (IV) visade att den svenska versionen av instrumentet ICE-FPSQ var valid och reliabel i svensk kontext. Föräldrarnas skattningar av uppfattat familjecentrerat stöd till familjen från sjuksköterskor visade sig vara lågt.

Slutsats. En övergripande slutsats från de tre första delstudierna pekar mot att innebörder i stöd för föräldrarna är stöd genom att ha goda, interaktiva relationer med vårdpersonalen, bli mött som en hel familj med unika och individuella behov samt inkluderade i vårdprocessen för att kunna stödja varandra inom familjen. Dessa fynd pekar mot familjecentrerad pediatrisk omvårdnad som sannolikt är lämplig för att, på ett mångfacetterat sätt, möta varje familjs behov av att bli bemött som en unik helhet. Det Isländska instrumentet ICE-FPSQ är designad utifrån teorin om familjecentrerad omvårdnad. I delstudie IV visade resultaten på acceptabla psykometriska egenskaper för den svenska versionen av instrumentet. Fynden visade även att föräldrarna inte skattade höga nivåer av familjecentrerat stöd från sjuksköterskor.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2014. , 63 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1688
Keyword [sv]
Barnsjuksköterskor, familjecentrerad omvårdnad, fenomenologisk hermeneutisk tolkningsmetod, föräldrar, ICE-FPSQ, medfödda hjärtfel, narrativa intervjuer, psykometriska egenskaper, stöd
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-96457ISBN: 978-91-7601-169-0 (print)OAI: oai:DiVA.org:umu-96457DiVA: diva2:764816
Public defence
2014-12-12, Hörsal B, 9 tr, Norrlands universitetssjukhus, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2014-11-21 Created: 2014-11-20 Last updated: 2014-11-20Bibliographically approved
List of papers
1. Experience of support for parents of adolescents with heart defects: supported to be supportive
Open this publication in new window or tab >>Experience of support for parents of adolescents with heart defects: supported to be supportive
2012 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 27, no 4, 366-374 p.Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to illuminate the meanings of the lived experience of support for parents of adolescents with heart defects. Narrative interviews were conducted with four mothers and two fathers of adolescents with heart defects. Interviews were interpreted using a phenomenological-hermeneutic method. The interpretation revealed that parents, themselves, attempt to be very supportive. They support their adolescent children, the rest of their families, the staffs of their children's schools, and others around their children. The sense of gratification and contentment that parents receive from fulfilling supportive functions is, in turn, influenced by the support that they, themselves, receive from care providers.

Place, publisher, year, edition, pages
WB Saunders, 2012
Keyword
Adolescent, congenital heart defect, parents, phenomenological- hermeneutic method, support
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-57041 (URN)10.1016/j.pedn.2011.04.025 (DOI)000311706400013 ()22703684 (PubMedID)
Available from: 2012-07-03 Created: 2012-07-03 Last updated: 2017-12-07Bibliographically approved
2. Mothers' lived experiences of support when living with young children with congenital heart defects
Open this publication in new window or tab >>Mothers' lived experiences of support when living with young children with congenital heart defects
2014 (English)In: Journal for specialists in pediatric nursing, ISSN 1744-6155, 1539-0136, Vol. 19, no 1, 54-67 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The purpose of this study was to illuminate the meanings of support as disclosed by mothers of children with congenital heart defects (CHD).

DESIGN AND METHOD: Narrative interviews were conducted with 10 mothers of children with CHD. A phenomenological-hermeneutic method was used for interpretation of the transcribed interviews.

RESULTS: The comprehensive understanding of mothers' lived experiences of support emerged as the experiences of receiving good support, receiving "poor support," and absence of support.

PRACTICE IMPLICATIONS: Mothers receiving person-centered and family-centered care feel more supported and are more likely to adapt to the stresses of parenting a child with CHD.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014
Keyword
Children, congenital heart defect, mother, phenomenological-hermeneutic method, support
National Category
Nursing Pediatrics
Identifiers
urn:nbn:se:umu:diva-84825 (URN)10.1111/jspn.12049 (DOI)000329370300006 ()24124764 (PubMedID)
Available from: 2014-01-20 Created: 2014-01-20 Last updated: 2014-11-21Bibliographically approved
3. Fathers' experiences when having a child with heart defects
Open this publication in new window or tab >>Fathers' experiences when having a child with heart defects
(English)Manuscript (preprint) (Other academic)
Abstract [en]

The purpose of the study was to illuminate the meanings of the lived experiences of support as disclosed by fathers of children with CHD. Narrative interviews were conducted individually with five fathers of children diagnosed with a CHD. A phenomenological-hermeneutic method was used to interpret the verbatim transcribed narrative interviews. The meanings of the lived experiences of support for the fathers were identified in two themes and illustrate the fathers’ feelings of being supported when being in a shared relationship with others. A third theme illustrates the situation when support is absent. Our findings pointed to that support for fathers of children with a CHD might be best promoted by the philosophy of family-centered care.

Keyword
congenital heart defects, family-centered care, fathers, phenomenological-hermeneutic, support
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-96442 (URN)
Available from: 2014-11-20 Created: 2014-11-20 Last updated: 2014-11-20Bibliographically approved
4. A translation into Swedish and psychometric analysis of the Icelandic instrument “ICE-Family Perceived Support Questionnaire”, and parents’ estimations of support to families from nurses
Open this publication in new window or tab >>A translation into Swedish and psychometric analysis of the Icelandic instrument “ICE-Family Perceived Support Questionnaire”, and parents’ estimations of support to families from nurses
Show others...
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Aims and objectives. Testing the psychometric properties, reliability, and validity of a cross-cultural translation into Swedish of the Icelandic instrument “ICE-Family Perceived Support Questionnaire” and, furthermore, reporting estimations of support given by nurses to families in a sample of parents of children with congenital heart defects.

Background. Parents of children with congenital heart (CHD) defects often experience greater psychosocial morbidity than parents of children with other medical conditions. In order to design and evaluate interventions with family-centered support, a suitable instrument for measuring family members’ perceived support is required for the Swedish context.

Design. A translation and psychometric testing of the instrument ICE-FPSQ.

Methods. A sample of 97 parents, including both fathers and mothers, of children with CHD selected in year 2012. A translation of the ICE-FPSQ into Swedish was done, and reliability and validity were tested for the Swedish version.

Results. Parents scored low on perceived family support from nurses on the ICE-FPSQ scale. The Swedish version of the ICE-FPSQ was found to be reliable and valid in this context. Reliability was tested by analyzing internal consistency through Cronbach’s α for the entire scale and the two subscales. Test-retest was performed by calculating intra-class correlation, and the results showed satisfactory scale stability over time. The results from the validity test illustrated an acceptable model fit of the Swedish version.

Conclusion. This study, by psychometrically testing an instrument for Swedish conditions, has provided an instrument for measuring families’ experience of cognitive and emotional support from nurses to families in Sweden. Additionally, the present study found while testing this instrument that nurses at four pediatric cardiac outpatient clinics only sparingly offered family-centered care to the parents.

Relevance to clinical practice. The Swedish version of ICE-FPSQ can be considered useful to measure the effects of family-centered support interventions in the future. 

Keyword
congenital heart defects, family-centered care, ICE-FPSQ, nursing, parents, perceived support, psychometric properties, reliability, validity
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-96452 (URN)
Available from: 2014-11-20 Created: 2014-11-20 Last updated: 2014-11-20Bibliographically approved

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