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  • 1. Barremo, Ann-Sofi
    et al.
    Bruce, Elisabeth
    Västernorrlands läns landsting, Örnsköldsvik (Västernorrland County Council).
    Salander, Monica
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Personers upplevelse av att leva med kronisk hjärtsvikt: Systematisk litteraturstudie2008In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 28, no 3, p. 34-38Article in journal (Refereed)
    Abstract [en]

    Background: Heart failure is a clinical syndrome where the heart is no longer able to maintain adequate blood circulation to the tissue. Many suffer from symptoms difficult to handle such as dyspnoea, fatigue, and physical weakness.

    Aim: The purpose of the study was to investigate peoples’ experiences of living with congestive heart failure.

    Method: A systematic literature review was used. Relevant articles were found in the Medline and Cinahl databases. The articles were examined, classified and critically appraised. Twenty articles were included. A qualitative content analysis was used to organize the results.

    Results: The results are described in three main categories: losses, protecting independences and readjustment. The category ‘losses’ details physical, emotional and social changes that people experience as losses caused by the debilitating symptoms of heart failure. The category ‘protecting independences’ shows the different ways in which people try to keep control over their lives. The category ‘readjustment’ presents how people try to seek a new ‘wholeness’ in life after the changes heart failure have caused by using acceptance, adaptation and finding new meanings.

    Conclusion: Living with congestive heart failure can be experienced as a synopsis of the «suffering human being» on a continuum, a time axle; from falling ill to seeking a new meaning in life.

  • 2.
    Bruce, Elisabeth
    Umeå University, Faculty of Medicine, Department of Nursing.
    Erfarenheter av stöd bland föräldrar till barn med medfödda hjärtfel2014Doctoral 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.

  • 3.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Dorell, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Erlingsson, Christen
    Lindkvist, Marie
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. Umeå University, Faculty of Social Sciences, Umeå School of Business and Economics (USBE), Statistics.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    A translation into Swedish and psychometric analysis of the Icelandic instrument “ICE-Family Perceived Support Questionnaire”, and parents’ estimations of support to families from nursesManuscript (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. 

  • 4.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Dorell, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Erlingsson, Christen
    Linnaeus University, Kalmar, Sweden.
    Lindkvist, Marie
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Translation and Testing of the Swedish Version of Iceland-Family Perceived Support Questionnaire With Parents of Children With Congenital Heart Defects2016In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 22, no 3, p. 298-320Article in journal (Refereed)
    Abstract [en]

    There is a need for a suitable instrument for the Swedish context that could measure family members' perceptions of cognitive and emotional support received from nurses. The purpose of this study was to translate and test the psychometric properties of the Swedish version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and, further, to report perceptions of support from nurses by family members of children with congenital heart defects (CHDs). A sample of 97 parents of children with CHD, living in Sweden, completed the Swedish translation of ICE-FPSQ. The Swedish version of ICE-FPSQ was found to be reliable and valid in this context. Parents scored perceived family support provided by nurses working in pediatric outpatient clinics as low, which suggests that nurses in these outpatient contexts in Sweden offered family nursing only sparingly.

  • 5.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Institutionen för omvårdnad i Örnsköldsvik.
    Lilja, Catrine
    Umeå University, Faculty of Medicine, Department of Nursing. Institutionen för omvårdnad i Örnsköldsvik.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing. Institutionen för omvårdnad i Örnsköldsvik.
    Mothers' lived experiences of support when living with young children with congenital heart defects2014In: Journal for specialists in pediatric nursing, ISSN 1744-6155, 1539-0136, Vol. 19, no 1, p. 54-67Article in journal (Refereed)
    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.

  • 6.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fathers' experiences when having a child with heart defectsManuscript (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.

  • 7.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umea Univ, Dept Nursing, Örnskoldsvik, Sweden.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing. Umea Univ, Dept Nursing, Örnskoldsvik, Sweden.
    Support for Fathers of Children With Heart Defects2016In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 25, no 3, p. 254-272Article in journal (Refereed)
    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 congenital heart defect (CHD). Narrative interviews were conducted individually with five fathers of children diagnosed with 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 mutual relationship with others. A third theme illustrates the situation when support is absent. Our findings indicate that support for fathers of children with CHD might be best promoted by the philosophy of family-centered care.

  • 8.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Experience of support for parents of adolescents with heart defects: supported to be supportive2012In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 27, no 4, p. 366-374Article in journal (Refereed)
    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.

  • 9.
    Bruce, Elisabeth
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Pediatric nurses' perception of support for families with children with congenital heart defects2018In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, no 8, p. 950-966Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to illuminate pediatric nurses' (PNs) perceptions of support for families with a child with a congenital heart defect. The study used a qualitative design with narrative interviews with eight PNs in Northern Sweden, and the interview data were analyzed with content analysis. The analysis revealed that the nurses perceive that letting the parents be involved in their child's care is of great importance in supporting the families. Although they have a paternalistic attitude to the families, they also stated that nurses should inform the parents about the care of the child, create a good relationship with the family, and build trust among all parties involved.

  • 10.
    Sundin, Karin
    et al.
    Umeå University, Faculty of Medicine, Nursing.
    Bruce, Elisabeth
    Umeå University, Faculty of Medicine, Nursing.
    Barremo, Ann-Sofi
    Elderly women's experiences of support when living with congestive heart failure2010In: International Journal of Qualitative Studies on Health and Well-being, Vol. 5, no 2Article in journal (Refereed)
    Abstract [en]

    Heart failure is a chronic syndrome that has physiological, psychological and social effects. The aim of the study was toilluminate the meanings of support as experienced by elderly women with chronic heart failure. Narrative interviews wereconducted with five elderly women with chronic heart failure. A phenomenological hermeneutic method of interpretationwas used. The meanings of support were experienced by the women out of two perspectives, that is, when support is presentand when there is a lack of support. The findings were revealed in two themes: ‘‘Feeling confident means support’’ and‘‘Feeling abandoned’’. The women do not wish to be a burden. They want to be independent as much as possible to defendtheir dignity. An important support to the women is that they are understood and confirmed in their illness. Supportiverelations are most valuable, that is, a relationship that supports the women’s independence. If there is no supportiverelationship, they feel like a burden to others and they feel lonely; this loneliness creates suffering and counteracts wellbeingand health.

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