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  • 1.
    Bergström, Peter
    et al.
    Umeå University, Faculty of Social Sciences, Department of applied educational science.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Developing the role of Swedish advanced practice nurse (APN) through a blended learning master's program: consequences of knowledge organisation2018In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 28, p. 196-201Article in journal (Refereed)
    Abstract [en]

    This paper reports on a research study conducted with a group of nurses in Sweden enrolled in a newly developed blended learning master's programme to become advanced practice nurses (APNs). As background, the paper presents the regional needs the programme is intended to address and describes how the programme was designed. The aim was to understand how, from students' perspective, the nurse master's programme structured knowledge for their future position as APNs. The research question focuses on how the master's programme prepares students by meeting their diverse needs for knowledge. Empirical material was collected at two times during the students' first and second years of study through semi-structured qualitative interviews. The findings highlight the process in which these master's students gained a more advanced identity of becoming APNs. This process demonstrates how students perceive their current position as nurses based on a discourse of knowledge in relation to the practical and theoretical knowledge they encounter in the master's programme. This article concludes by recommending that attention should be paid to developing APN role models in the current Swedish healthcare system.

  • 2.
    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. 

  • 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
    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.

  • 4.
    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.

  • 5.
    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.

  • 6.
    Ellberg, Lotta
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Obstetrics and Gynaecology. Umeå University, Faculty of Medicine, Department of Nursing.
    Högberg, Ulf
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Obstetrics and Gynaecology. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    “We feel like one, they see us as two”: new parents' discontent with postnatal care2010In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 26, no 4, p. 463-468Article in journal (Refereed)
    Abstract [en]

    Objective postnatal care has gone through remarkable changes, such as reducing the length of hospital stay and increasing the parents’ responsibility. Focusing on dissatisfaction, this study describes how new parents experience postpartum care.

    Design cross-sectional, population-based study, based on questionnaires.

    Participants 1474 parents.

    Measurements and findings the questionnaires, posted six months after childbirth, addressed how parents experienced postnatal care. The data were analysed with descriptive statistics and content analysis.

    Key conclusions a main finding was that the close emotional attachment between the parents was not always supported by staff. The father was treated as an outsider and the care was described as ‘a woman's world’. The asymmetric encounter between parents and staff was pronounced with respect to decision-making, and some designated this as ‘paternalism’. A great deal of the discontent with health care may be due to organisational failure, and the postnatal care should be more prioritised in the health-care organisation.

    Implications for practice midwives should acknowledge that parents, irrespective of gender, should have equal opportunities as parents during postpartum care as parenting is a joint project.

  • 7.
    Ellberg, Lotta
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Obstetrics and Gynaecology. Umeå University, Faculty of Medicine, Department of Nursing.
    Högberg, Ulf
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Obstetrics and Gynaecology. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Källén, Karin
    Department of Reproductive Epidemiology, Tornblad Institute, Lund University, Lund, Sweden.
    Håkansson, Stellan
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Maternity care options influences readmission of newborns2008In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 97, no 5, p. 579-583Article in journal (Refereed)
    Abstract [en]

    Aim: To analyse morbidity and mortality in healthy newborn infants in relation to various routines of post-natal follow-up. Design: cross-sectional study. Setting: maternity care in Sweden. Population: healthy infants born at term between 1999 and 2002 (n = 197 898).

    Methods: Assessment of post-natal follow-up routines after uncomplicated childbirth in 48 hospitals and data collected from the Swedish Medical Birth Register, Hospital Discharge Register and Cause-of-Death Register. Main outcome measure: neonatal mortality and readmission as proxy for morbidity.

    Results: During the first 28 days, 2.1% of the infants were readmitted generally because of infections, jaundice and feeding-related problems. Infants born in hospitals with a routine neonatal examination before 48 h and a home care programme had a readmission rate [OR, 1.3 (95% CI, 1.16–1.48)] higher than infants born in hospitals with routine neonatal examination after 48 h and 24-h care. There were 26 neonatal deaths.

    Conclusion: Post-delivery care options and routines influence neonatal morbidity as measured by hospital readmission rate. A final infant examination at 49–72 h and an active follow-up programme may reduce the risk of readmission.

  • 8. Engvall, Gunn
    et al.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Mullaney, Tara
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Radiation Physics.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Ångström-Brännström, Charlotte
    Umeå University, Faculty of Medicine, Department of Nursing.
    Children's experiences and responses towards an intervention for psychological preparation for radiotherapy2018In: Radiation Oncology, E-ISSN 1748-717X, Vol. 13, article id 9Article in journal (Refereed)
    Abstract [en]

    Background: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

    Methods: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety.

    Results: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group.

    Conclusions: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development.

    Trial registration: The study design was structured as an un-matched case-control study, baseline group vs. intervention group. Trial registration: ClinicalTrials.gov NCT02993978 , Protocol Record 2012-113-31 M. Retrospectively registered - 21 November 2016.

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  • 9. Engvall, Gunn
    et al.
    Ångström-Brännström, Charlotte
    Umeå University, Faculty of Medicine, Department of Nursing.
    Mullaney, Tara
    Umeå University, Faculty of Science and Technology, Umeå Institute of Design.
    Nilsson, Kristina
    Wickart-Johansson, Gun
    Svärd, Anna-Maja
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    It Is Tough and Tiring but It Works - Children's Experiences of Undergoing Radiotherapy2016In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 4, article id e0153029Article in journal (Refereed)
    Abstract [en]

    Approximately 300 children ages 0 to 18 are diagnosed with cancer in Sweden every year, and 80 to 90 of them undergo radiotherapy treatment. The aim was to describe children's experiences of preparing for and undergoing radiotherapy, and furthermore to describe children's suggestions for improvement. Thirteen children between the ages of 5 and 15 with various cancer diagnoses were interviewed. Data was analyzed using qualitative content analysis. The findings revealed five categories: positive and negative experiences with hospital stays and practical arrangements; age-appropriate information, communication, and guidance to various degrees; struggle with emotions; use of distraction and other suitable coping strategies; and children's suggestions for improvement during radiotherapy. An overarching theme emerged: "It is tough and tiring but it works". Some key areas were: explanatory visits, the need for information and communication, being afraid, discomfort and suffering, the need for media distraction, dealing with emotions, and the need for support. A systematic, family-centered preparation program could possible help families prepare and individualized distraction during radiotherapy could contribute to reducing distress. Further studies with interventions could clarify successful programs.

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  • 10.
    Forsner, Maria
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Högskolan Dalarna.
    Norström, Fredrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Nordyke, Katrina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Ivarsson, Anneli
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Relaxation and guided imagery used with 12-year-olds during venipuncture in a school-based screening study2014In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, no 3, p. 241-252Article in journal (Refereed)
    Abstract [en]

    Needle-related procedures are reported to be problematic for children. In a school-based celiac disease screening, 12-year-olds' experiences with relaxation and guided imagery (R-GI) during venipuncture were investigated. One group tried nurse-led R-GI (n = 60) and another group received standard care (SC; n = 49). A mixed method design was applied using short written narratives, facial affective scale (FAS), and visual analog scale (VAS) for pain intensity. Qualitative content analysis highlighted that diversity and contradictions when facing blood tests. FAS scores were significantly lower in the SC group before (p = 0.01), during (p = 0.01), and after (p = 0.01) venipuncture. VAS scores did not differ between the groups. The blood test was mostly experienced as unproblematic, and GI during venipuncture did not decrease pain or affect. However, the fact that a number of children scored high FAS indicates a need for effective methods to help children cope with needle-related school-based procedures.

  • 11. Holsti, Liisa
    et al.
    Grunau, Ruth E
    Whifield, Michael F
    Oberlander, Tim F
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Behavioral responses to pain are heightened after clustered care in preterm infants born between 30 and 32 weeks gestational age2006In: The Clinical Journal of Pain, ISSN 0749-8047, E-ISSN 1536-5409, Vol. 22, no 9, p. 757-764Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To compare biobehavioral pain responses of preterm infants born at differing gestational ages (GAs) when pain was preceded by a rest period or by a series of routine nursing interventions.

    METHODS: In a randomized, within subjects, cross-over design, facial (Neonatal Facial Coding System), sleep/wake state and heart rate (HR) responses of 43 preterm infants [mean birth weight: 1303 g (range 590 g to 2345 g); mean GA at birth: 30 weeks (range 25 to 32)] were examined across 3 phases of blood collection (Baseline, Lance, and Recovery) under 2 conditions: pain after a 30-minute rest period versus pain after a series of routine nursing interventions (clustered care). Infant behavioral responses were coded from continuous bedside videotapes. HR was analyzed using custom physiologic signal processing software.

    RESULTS: Infants born at earlier GA (<30 wk) had equally intense facial responses during the Lance phase regardless of condition. However, later born infants (> or =30 wk GA) showed heightened facial responses indicative of sensitized responses during blood collection when it was preceded by clustered care (P=0.05). Moreover, later born infants had significantly lower facial (P=0.05) and HR (P=0.04) reactivity during Recovery when blood collection followed clustered care.

    DISCUSSION: Earlier born preterm infants showed heightened states of arousal and poor ability to modulate HR during Recovery when an invasive procedure was preceded by routine tactile nursing procedures. Alternatively, later born infants exhibited sensitized responses when clustered care preceded blood collection. Our findings support the importance of cue based individualized approaches to care.

  • 12.
    Lindh, Viveca
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Engvall, Gunn
    Ångström-Brännström, Charlotte
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nilsson, Kristina
    Wickart-Johansson, Gun
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Children's voices on experiencing radiotherapy2016In: Oncology Nursing Forum, ISSN 0190-535X, E-ISSN 1538-0688, Vol. 43, no 2, p. 134-134Article in journal (Other academic)
  • 13.
    Lindh, Viveca
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Persson, Chatrin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Saveman, Britt Inger
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences. Umeå University, Faculty of Medicine, Department of Nursing.
    Englund, Claire
    Umeå University, Umeå University Library, Centre for teaching and learning (UPL).
    Idberger, Karl
    Umeå University, Umeå University Library, Centre for teaching and learning (UPL).
    Östlund, Ulrika
    Umeå University, Faculty of Medicine, Department of Nursing.
    An initiative to teach family systems nursing using online health-promoting conversations: A multi-methods evaluation2013In: Journal of Nursing Education and Practice, ISSN 1925-4040, E-ISSN 1925-4059, Vol. 3, no 2, p. 54-66Article in journal (Refereed)
    Abstract [en]

    Background: Family systems nursing embraces the view that one family member’s illness affects other family members and vice versa. Family nursing developed as a way for nurses to work with families to promote health. Previously, teachers performed most of the education on health-promoting conversations with families on campus. Because online education is increasingly requested in nursing, this article evaluates teaching family systems nursing by using synchronous online health-promoting conversations.

    Methods: Fifteen registered nurses attended the course “Health-Promoting Family Focused Nursing”, an advanced-level nursing elective 10-week course. The course used technology enhanced learning and was evaluated qualitatively and quantitatively. Students and teachers participated in semi-structured focus group interviews analyzed qualitatively. The students filled in a traditional course evaluation. Students responded before and after the course to the multidimensional research instrument “Families’ Importance in Nursing Care—Nurse’s Attitudes” (FINC-NA).

    Results: The students were satisfied with the course and the synchronous health-promoting conversations. They learned to “think family” and acknowledged the importance of inviting families to take part in the care of a family member. They stated that the online practice had helped them gain a useful tool for their future family nursing practice. The teachers appreciated working in a team to develop the course. At the start of the project they viewed the online technology as a challenge. However, during the course they saw many pedagogical possibilities with the synchronous meetings and that the online family conversation training worked well. The ability to record the meetings offered educational advantages and the opportunity for students to reflect on the conversations. Even if the students rated families importance in nursing care positively prior to the course on FINC-NA, the students still gave the following domains even stronger support post-course: Family as a resource in nursing care, Family as a burden, and Family as own resource.

    Conclusions: Family systems nursing and health-promoting conversations with families, comprising interaction between several participants, can be learned using online pedagogical methods. Furthermore, the belief that health-promoting family conversations need to be held with all participants in the same room has been challenged.

  • 14.
    Lundberg, Veronica
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Eriksson, Catharina
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Petersen, Solveig
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Child and Adolescent Psychiatry.
    Eurenius, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study2012In: Pediatric Rheumatology, E-ISSN 1546-0096, Vol. 10, article id 33Article in journal (Refereed)
    Abstract [en]

    Background: Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA.

    Methods: Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child.

    Results: In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports.

    Conclusions: More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.

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  • 15.
    Marklund, Sonja
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sjödin Eriksson, Eva
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Saveman, Britt-Inger
    Umeå University, Faculty of Medicine, Department of Nursing.
    Family Health Conversations at a pediatric oncology center: a way for families to rebalance the situation2018In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 38, p. e59-e65Article in journal (Refereed)
    Abstract [en]

    Purpose: The study aimed to describe and understand adult family members' experiences of participating in a Family Health Conversation (FamHC) when a child is diagnosed with cancer.

    Design and Methods: Twelve individual interviews were performed with adult family members who had participated in a FamHC. During the interviews each interviewee was a spokesman for his or her respective family. Thereby the family was included as a system. The interviews were analyzed using a hermeneutic approach.

    Results: The analysis resulted in four themes: "To unburden the burden," "Seeing things in a new light," "To be seen the way you are," and "Talking to someone who is both within and alongside." Finally an overarching theme evolved, " To rebalance the situation" revealing the meaning of taking part in the FamHC.

    Conclusion: All participants considered the FamHC to be valuable. It was surprising that such a relatively small investment of two family conversations and a closing letter could have such significance for the families in their difficult situation.

    Practice Implications: With training, clinical nurses can use a well-established structured interview process such as the Family Health Conversation to help family members to gain insight into each other's experiences, which increase their ability to cope and regain control.

  • 16.
    Mullaney, Tara
    et al.
    Umeå University, Faculty of Science and Technology, Umeå Institute of Design.
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Radiation Physics. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nilsson, K.
    Uppsala Univ, Uppsala, Sweden; Akad Hosp, Uppsala, Sweden.
    Wickart-Johansson, G.
    Karolinska Univ Hosp, Stockholm, Sweden.
    Svard, A. M.
    Umea Univ Hosp, S-90185 Umea, Sweden.
    What can service design do for the pediatric radiotherapy experience?2014In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 61 2, no Supplement: 2 Meeting Abstract: O-187, p. S154-S154Article in journal (Other academic)
  • 17. Mårtensson, Gunilla
    et al.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Edin, Kerstin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hedberg, Pia
    Umeå University, Faculty of Medicine, Department of Nursing.
    Löfmark, Anna
    Development and validation of a clinical assessment tool for postgraduate nursing education: A consensus-group study2020In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 44, article id 102741Article in journal (Refereed)
    Abstract [en]

    Postgraduate education programmes in health professions need to assess their students’ ability to practise in relation to the expected standards and to verify that students have met certain criteria upon programme completion (Ossenberg et al., 2015). Assessment of clinical practice must also correspond with the requirements for knowledge, skills, and professional judgements stipulated in national regulatory requirements. In this context, the importance of having valid and reliable assessment tools for the assessment process is clear (Shumway and Harden, 2003; McCarthy and Murphy, 2008; Wu et al., 2015). The present paper reports on a process to update and validate the tool Assessment of Clinical Education (AssCE-master) for use in clinical postgraduate nursing education.

  • 18.
    Rullander, Anna-Clara
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Isberg, Stefan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Anaesthesiology.
    Karling, Mats
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Anaesthesiology.
    Jonsson, Håkan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Orthopaedics.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Adolescents' experience with Scoliosis Surgery: A Qualitative Study2013In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 14, no 1, p. 50-59Article in journal (Refereed)
    Abstract [en]

    This article reports a study of adolescents' narrated experiences of undergoing scoliosis surgery. Six adolescents were interviewed. Open and semistructured questions were asked, and a qualitative content analysis of the text was performed. The results are presented in three main categories followed by subcategories. The three main categories of experience were emotional, physical, and social. The emotional aspects that emerged were fear, nightmares, nervousness, and helplessness. These had a great impact on adolescents' well-being before, during, and after the hospital visit. The physical aspects were mobilization, scars, different hip levels, pain, nausea, appetite, and urinary catheter. These aspects caused much discomfort, mostly during the hospital visit. The social aspects were friends, power, coaching and comfort, and sports. Some of the social aspects had a strong negative impact on the adolescents' well-being mostly after the hospital visit. This study suggests that both before and long after the surgery adolescents have strong emotions that they should be better prepared and helped to manage. To optimize perioperative care an interdisciplinary, a holistic approach must be taken that incorporates the complexity and whole of the adolescent's experiences. The findings of this study suggest that perioperative care of adolescents during scoliosis surgery needs to be optimized. To improve patients' psychologic preparation before surgery pediatric nurses should learn more about the individual patient and make care plans from a holistic perspective. Follow-up after discharge should address emotional, social, and physical aspects of the adolescent's health. (C) 2013 by the American Society for Pain Management Nursing

  • 19.
    Rullander, Anna-Clara
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jonsson, Håkan
    Lundström, Mats
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Young People's Experiences With Scoliosis Surgery: A Survey of Pain, Nausea, and Global Satisfaction2013In: Orthopedic Nursing, ISSN 0744-6020, E-ISSN 1542-538X, Vol. 32, no 6, p. 327-333Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Scoliosis surgery is one of the most extensive elective surgical processes performed on young people. Although there is a great store of knowledge of surgical techniques, patients' experiences of going through surgery have not been extensively studied. PURPOSE: The aim of this study is to describe how a cohort of young people and their parents retrospectively rate postoperative pain and nausea and describe their experiences of scoliosis surgery. METHODS: In a retrospective cohort study, 87 young people aged 8-25 years with scoliosis who underwent corrective surgery from 2004 to 2007 were invited to complete a questionnaire, as were their parents. The semistructured questionnaire dealt with experiences of pain, nausea, and global satisfaction pre- and posthospitalization, assessed by visual analogue scales. The free text commentaries were analyzed using qualitative content analysis. RESULTS: A total of 51 patients (59%) and 65 parents (75%) answered the questionnaires. Out of the completed questionnaires, 41 had idiopathic, 23 neuromuscular, and 6 other types of scoliosis. Postoperative patient-rated pain was severe 7.3 (median, interquartile range 5-8.4, visual analogue scale 0-10 cm), and the severe pain lasted for 5 (median, 2.7-7.0) days. Nausea was rated to a median of 5 (1.1-7.3) and lasted for a median of 3 (1-5.2) days. Global satisfaction was rated to a median of 3.2 (1.5-5.2). Postoperative pain was the most prominent issue, and present pain was found in 51% of respondents. Nausea and loss of appetite were common during the entire hospital stay. Waiting for the nurses' assistance, lack of control, and technical failures with the analgesia equipment caused discomfort. Parents experienced a lack of confidence in the nurses and felt helpless to support their child or relieve the child's suffering. CONCLUSION: Young people who underwent scoliosis surgery reported severe postoperative pain and nausea during the hospitalization period and persistent and recent onset pain after discharge, although they did not indicate global dissatisfaction with the hospital stay.

  • 20.
    Rullander, Anna-Clara
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundström, Mats
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindkvist, Marie
    Umeå University, Faculty of Social Sciences, Umeå School of Business and Economics (USBE), Statistics. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Hägglöf, Bruno
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Child and Adolescent Psychiatry.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Stress symptoms among adolescents before and after scoliosis surgery: correlations with postoperative pain2016In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 7-8, p. 1086-1094Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The aim of this study was to describe stress symptoms among adolescents before and after scoliosis surgery and to explore correlations with postoperative pain.

    BACKGROUND: Scoliosis surgery is a major surgical procedure. Adolescent patients suffer from preoperative stress and severe postoperative pain. Previous studies indicate that there is a risk of traumatisation and psychological complications during the recovery period.

    DESIGN: A prospective quantitative cohort study with consecutive inclusion of participants.

    METHODS: A cohort of 37 adolescent patients aged 13-18. To assess the adolescents' experiences before surgery and at six to eight months after surgery, the Trauma Symptom Checklist for Children - Alternative version, Youth Self-Report and Kiddie Schedule for Affective Disorder and Schizophrenia for children 12-18 were used. The Visual Analogue Scale was used for self-report of postoperative pain on day three.

    RESULTS: Rates of anxiety/depression and internalising behaviour were significantly higher before surgery than six months after. Preoperative anger, social problems and attention problems correlated significantly with postoperative pain on day three. At follow-up, postoperative pain correlated significantly with anxiety, social problems and attention problems.

    CONCLUSIONS: The results of this study indicate a need for interventions to reduce perioperative stress and postoperative pain to improve the quality of nursing care.

    RELEVANCE TO CLINICAL PRACTICE: Attention to preoperative stress and implementation of interventions to decrease stress symptoms could ameliorate the perioperative process by reducing levels of postoperative pain, anxiety, social and attention problems in the recovery period.

  • 21.
    Rullander, Anna-Clara
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundström, Mats O
    Umeå University, Faculty of Medicine, Department of Nursing.
    Östlund, Ulrika
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Adolescents' experiences of scoliosis surgery and the trajectory of self-reported pain: a mixed-methods study2017In: Orthopedic Nursing, ISSN 0744-6020, E-ISSN 1542-538X, Vol. 36, no 6, p. 414-423Article in journal (Refereed)
    Abstract [en]

    Scoliosis surgery for adolescents is a major surgery with a diffi cult recovery. In this study, a mixed-methods design was used to broaden the scope of adolescents' experiences of surgery for idiopathic scoliosis and the trajectory of self-reported pain during the hospital stay and through the fi rst 6 months of recovery at home. Self-reports of pain, diaries, and interviews were analyzed separately. The results were then integrated with each other. The trajectory of self-reported pain varied hugely between individuals. Adolescents experienced physical suffering and struggled to not be overwhelmed. The adolescents described the environmental and supportive factors that enabled them to cope and how they hovered between suffering and control as they strived toward normality. This study highlights areas of potential improvement in perioperative scoliosis care in terms of nursing support and pain management.

  • 22.
    Strinnholm, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Experiences of Double-Blind, Placebo-Controlled Food Challenge (DBPCFC): a qualitative analysis of mothers' experiences2010In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 14, no 2, p. 179-188Article in journal (Refereed)
    Abstract [en]

    Fear and anxiety are recurring problems for parents of food-allergic children. However, no study has described parents' experiences of introducing food to their children after double-blind provocation. Therefore the aim of this study was to investigate mothers' experiences during their child's negative Double-Blind, Placebo-Controlled Food Challenge (DBPCFC) and the following reintroduction of food. Eight mothers were interviewed and a qualitative content analysis displayed two themes and six subthemes. The first theme, 'living with fear of the unknown', included the subthemes of 'fear of losing control', 'having faith even though fear prevails', 'reintroducing despite fear' and 'fear of causing harm'. In the second theme, the mothers described the challenging process of 're-evaluating earlier experiences' through the sub-themes of 'daring to take new challenges'and 'refraining from new challenges'. Our study indicates that the maternal perspective - not only the professional perspective - needs to be taken into account if mothers are to succeed in the challenging process of reintroducing foods.

  • 23.
    Strinnholm, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine. Umeå University, Faculty of Medicine, Department of Nursing.
    Hedman, Linnéa
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine. Department of Health Sciences, Division of Nursing, Luleå University of Technology.
    Winberg, Anna
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Jansson, Sven-Arne
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rönmark, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine.
    Health Related Quality of Life among schoolchildren aged 12-13 years in relation to food hypersensitivity phenotypes: a population-based study2017In: Clinical and Translational Allergy, E-ISSN 2045-7022, Vol. 7, article id 20Article in journal (Refereed)
    Abstract [en]

    Background:

    While Health Related Quality of Life has been investigated among children with IgE-mediated food allergy, less is known about quality of life among children with other types of hypersensitivity to food. The aim of this study was to investigate Health Related Quality of Life (HRQL) in children with and without food hypersensitivity. Further, we compared HRQL between children with different phenotypes of food hypersensitivity.  

    Methods:

    In a large population-based cohort of schoolchildren in Northern Sweden, the parents of 2,612 (96% of invited) completed a questionnaire. All 125 (5%) children who reported complete elimination of milk, egg, fish or wheat due to food hypersensitivity were invited to a clinical examination and 94 children participated. Of these, 75 children also completed a generic (KIDSCREEN -52) and a disease-specific HRQL questionnaire (FAQLQ-TF). Thereafter, these children were categorised into the different phenotypes: current food allergy, outgrown food allergy, and lactose intolerance. Additionally, 209 children with unrestricted diets answered the generic questionnaire.

    Results:

    The median score of all KIDSCREEN -52 domains were above the population norm of 50 both in children with and without food hypersensitivity. No significant differences in distribution in generic or disease-specific HRQL were found between children with or without food hypersensitivity. There were no significant differences in HRQL between children with different phenotypes of food hypersensitivity. However, children with current food allergy tended to have the lowest HRQL. Further, poor HRQL defined as ≥75th percentile for the disease specific score was significantly more common in the current food allergy phenotype in the domain Emotional impact and the total FAQLQ, compared to the other phenotypes.

    Conclusions:  

    In this population-based study, 12-13 year old children reported good HRQL regardless of having food hypersensitivity or not. However, the children with the current phenotype reported lower HRQL than the other phenotypes. 

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  • 24.
    Strinnholm, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine. Umeå University, Faculty of Medicine, Department of Nursing.
    Winberg, Anna
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Hedman, Linnéa
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine. Lule Univ Technol, Dept Hlth Sci, Div Nursing, Lulea, Sweden.
    Rönmark, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Occupational and Environmental Medicine. The OLIN Unit, Umeå University, Umeå, Sweden..
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Reintroduction failure is common among adolescents after double-blind placebo-controlled food challenges2017In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 106, no 2, p. 282-287Article in journal (Refereed)
    Abstract [en]

    AIM: There has been a lack of research on adolescents' who undergo double-blind placebo-controlled food challenges. The aim of this study was to investigate food allergic adolescents' experiences and consequences of double-blind placebo-controlled food challenges.

    METHODS: This qualitative, descriptive interview study included 17 adolescents aged 14-15 years with total elimination of cows' milk, hens' eggs or cod due to food allergies. The participants, who were initially identified from a large population-based cohort study, were interviewed 18 months after completing their challenges.

    RESULTS: The double-blind placebo-controlled food challenge proved to be a complex experience for the adolescents, involving fear of potential reactions and the hope that the food could be reintroduced. Experiences during the challenge were described in three themes: facing fears in a secure environment, being hesitant but curious about unknown tastes and waiting for unknown food reactions. Experiences after the challenge were desribed in two themes: gaining control and freedom and continuing old habits. A negative challenge was not consistently associated with the reintroduction of the challenged food.

    CONCLUSION: This study highlighted the importance of considering the adolescents' expectations and experiences of the challenge and the reintroduction process to ensure desirable changes in their dietary habits. Follow ups should be performed regardless of the outcome of challenges.

  • 25.
    Strinnholm, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Winberg, Anna
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Hedman, Linnéa
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Rönmark, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    To face fear: a qualitative study of adolescents' experiences of double-blind, placebo-controlled food challenges2015In: Allergy. European Journal of Allergy and Clinical Immunology, ISSN 0105-4538, E-ISSN 1398-9995, Vol. 70, p. 386-386Article in journal (Other academic)
    Abstract [en]

    Background: Double-blind, placebo-controlled food challenges are the gold standard for diagnosing the clinical relevance of a suspected food allergy. Hitherto there are no descriptions on how adolescents' experience this procedure. The aim of this study was to describe adolescents' experiences of double-blind, placebo-controlled food challenges and to what extent the provoked food was reintroduced following the challenge. Method: Seventeen adolescents were interviewed after participating in double-blind, placebo-controlled food challenges. The interview data was analyzed using qualitative content analysis.Results: Experiences during the challenge were: challenging fears in a secure environment, being curious but also hesitant to unknown tastes and waiting for unknown food reactions. Experiences after the challenge were: gaining control and freedom or to stay in old habits. Out of 20 challenges the outcome was negative in 11 cases and positive in 9. Five adolescents with a negative outcome and 4 with mild reactions reintroduced the provoked food. Conclusions: During the challenge the adolescents received knowledge about whether and how they reacted to the provoked food. Reintroduction of the food was not always consistent with the challenge outcome. Independent of the outcome of the challenge and the choices made based on the challenge result, all the adolescents strived for what they felt was a normal life. This study provides a better understanding of young people's experience of double-blind, placebo-controlled food challenge and their motivations to introduce -or not- the previously eliminated food. The result indicate that follow ups are important since the adolescents need support in their striving to manage new food-related situations after the challenge, independent of the outcome.

  • 26.
    Sundin, Karin
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Bäckström, Britt
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindkvist, Marie
    Umeå University, Faculty of Social Sciences, Umeå School of Business and Economics (USBE), Statistics.
    Saveman, Britt-Inger
    Umeå University, Faculty of Medicine, Department of Nursing.
    Östlund, Ulrika
    Responses after participating in Family Health Conversations in families with a family member who has suffered a stroke: A mixed methods research study2016In: Clinical Nursing Studies, ISSN 2324-7940, E-ISSN 2324-7959, Vol. 4, no 4, p. 46-57Article in journal (Refereed)
    Abstract [en]

    Background: It has been proposed that support for families in which a family member has suffered a stroke should involve the whole family system. Aim: The aim was to evaluate the responses of Family Health Conversation (FamHC) in families with a member under the age of 65 who has been diagnosed with stroke. Methods: In this mixed methods research study, families were included in an intervention group and in a control group. For both groups pre- and post-intervention quantitative data was collected and for the intervention group, qualitative data was collected post-intervention. Underlying theoretical propositions and the two data sets were then integrated. Results: Family health measured as “the general atmosphere of the interaction of the family” had improved in the intervention group when compared to the control group. The intervention families, moreover, described how they had become more cooperative, their communication had improved, they had become more confident with their situation and also when planning for the future when comparing to before the FamHC. Conclusions: Based on the empirical results supporting the theoretical proposition underlying FamHC, we conclude that it works as intended, and the evidence for the theoretical proposition is thereby strengthened. This paper contributes to the scientific evidence concerning FamHC. With the available evidence, RNs are suggested to consider changing practice so as to work in a more family-centred way to support families living with ill-health. Implementing FamHC can be one way of undertaking such supportive work.

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  • 27.
    Sundin, Karin
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Pusa, Susanna
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundstedt, Erika
    Wincent, Nina
    Östlund, Ulrika
    Bäckström, Britt
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Saveman, Britt-Inger
    Umeå University, Faculty of Medicine, Department of Nursing.
    What Couples Choose to Focus on During Nurse-led Family Health Conversations When Suffering Stroke2015In: International journal for human caring, ISSN 1091-5710Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to illuminate which topics 2 couples, ages younger than 65 years old, where 1 partner has suffered a stroke, choose to focus on when participating in nurse-led family health conversations. Six conversations were audiotaped, transcribed, and analyzed by qualitative content analysis. Three categories emerged illustrating that the couples choose to talk about how they were affected on a personal and family level and, moreover, the importance of support within and outside the family. The altered way of living involved distressed feelings, gratitude, and hopes. This study highlights the importance of nurses viewing the family as a unit.

  • 28.
    Uggla, C.
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lind, Torbjörn
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Lindkvist, Marie
    Umeå University, Faculty of Social Sciences, Umeå School of Business and Economics (USBE), Statistics. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    IMPACT-III is a valid and reliable questionnaire for assessing health-related quality of life in Swedish children with inflammatory bowel disease2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 2, p. 347-353Article in journal (Refereed)
    Abstract [en]

    Aim: This study examined the reliability, validity and factor structure of the Swedish version of the IMPACT-III questionnaire for assessing health-related quality of life in children with inflammatory bowel disease.

    Methods: We recruited 202 participants aged eight to 18years, who were enrolled from 16 of the 23 paediatric gastroenterology clinics across Sweden during 2010-2013. This cross-sectional study compared two versions of the IMPACT-III questionnaire - one with six factors and 35 items and one with four factors and 19 items - plus the Paediatric Quality of Life Inventory 4.0 Generic Core Scale. Disease activity was assessed and defined as active or inactive.

    Results: The mean total score for the six-factor IMPACT-III scale was 143.7/175, with a standard deviation (SD) of 17.9. There was a significant difference in mean total scores between the 133 children with inactive disease (147.8, SD: 14.9) and the 52 with active disease (133.0, SD: 20.3). Confirmatory factor analysis showed that the four-factor scale was more robust than the original six-factor scale. Concurrent validity and discriminant validity were high for both versions.

    Conclusion: The Swedish version of the IMPACT-III questionnaire was valid and reliable, but the shorter, four-factor version is quicker and may be more convenient in clinical settings.

  • 29.
    van den Berg, Johannes
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Back transport of infants to community hospitals: 12 years´ experience of an intervention to prepare parents for their infants´ transfer from neonatal intensive care to community hospital2011In: Journal of Neonatal Nursing, ISSN 1355-1841, E-ISSN 1878-089X, Vol. 17, no 3, p. 116-125Article in journal (Refereed)
    Abstract [en]

    Effective regionalized neonatal intensive care includes back transport of stable infants to community hospitals. This transition can be pleasant or frightening for the family, and psychological preparation is critical. The aim of this study was to evaluate an intervention performed in collaboration with the neonatal intensive care unit (NICU) and community hospitals (CH) in the northern health care region of Sweden. Questionnaires were sent to families who had an infant transported from NICU to CH and discharged to home over three periods from 1994 to 2007. Families rated information about the CH more accurate, reception at the CH better, and their preparation for the transition better when they were contacted by the CH during their stay at the NICU. Both NICU and CH staff have a responsibility to facilitate back transport by promoting communication between families and staff at the hospital to which they are to be transported.

  • 30.
    van den Berg, Johannes
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Prevalence of assigned primary nurses in a neonatal intensive care unit during the period 1998-20072013In: Neonatal, Paediatric & Child Health Nursing, ISSN 1441-6638, Vol. 16, no 1, p. 12-Article in journal (Refereed)
    Abstract [en]

    The implementation of primary nursing is expected to improve nurse-patient relationships and increase individuality in nursing care. However, it is apparent that not all families have had 'primary nurses' during hospital stays. To what extent primary nurses have been assigned to neonatal intensive care unit (NICU) families has not been described. The aim of this study is to report the prevalence of primary nursing care and elucidate whether the assignment of primary nurses increases the prevalence of admission interviews and written discharge summaries in an NICU setting in Sweden. Methods From 1998 to 2007, a total of 3,397 infants were admitted to a single NICU, of which 3,094 were included in this study. The following variables were collected: infant birth weight (BW) and gestational age at birth (GA), whether the family was assigned a primary nurse, whether the primary nurse performed an admission interview, and whether a discharge note was written. Results Primary nurses were assigned to 50% of families, according to the 3,094 charts examined. An admission interview with the primary nurse was documented in 41% of cases, and a written discharge note was recorded in 36%. Families with infants born &#8804;32 weeks GA were assigned primary nurses significantly more often than families whose infants were born &#8805;33 weeks GA. There were significant correlations between the prevalence of primary nurse assignments, admission interviews with families and the writing of discharge notes. Conclusion Assigning primary nurses to families increases the likelihood of both admission interviews being conducted at the start of NICU stays and discharge notes being written at the end of NICU stays, making visible that nursing care plans have been implemented and that follow-up plans have been forwarded to primary health care providers. More effort should be made to increase the prevalence of assigned primary nurses and to further study whether this is a determinant of nursing care quality.

  • 31.
    Ångstrom-Brännström, Charlotte
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Engvall, G.
    Mullaney, T.
    Nilsson, K.
    Wickart-Johansson, G.
    Svärd, A. M.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Facilitating Radiotherapy for Children: Technique, Design and Professional Care in Synergy, a Multicenter Intervention Study2016In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 63, p. S213-S213Article in journal (Other academic)
  • 32.
    Ångström-Brännström, Charlotte
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Engvall, Gunn
    Mullaney, Tara
    Umeå University, Faculty of Science and Technology, Umeå Institute of Design.
    Nilsson, Kristina
    Wickart-Johansson, Gun
    Svärd, Anna-Maja
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Children Undergoing Radiotherapy: Swedish Parents' Experiences and Suggestions for Improvement2015In: PLOS ONE, E-ISSN 1932-6203, Vol. 10, no 10, article id e0141086Article in journal (Refereed)
    Abstract [en]

    Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multi-center study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.

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  • 33.
    Ångström-Brännström, Charlotte
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Mullaney, Tara
    Nilsson, Kristina
    Wickart-Johansson, Gun
    Svärd, Anna-Maja
    Nyholm, Tufve
    Lindh, Jack
    Engvall, Gunn
    Parents’ experiences and responses to an intervention for psychological preparation of children and families during the child’s radiotherapy2018In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 35, no 2, p. 132-148Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate parents’ experiences and responses to a systematic intervention for psychological preparation of children and families during the child’s radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included—n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child’s RT.

  • 34.
    Ångström-Brännström, Charlotte
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nyholm, Tufve
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Radiation Physics.
    Lindh, Jack
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Engvall, Gunn
    Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy2019In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 42, no 5, p. E10-E18Article in journal (Refereed)
    Abstract [en]

    Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child’s RT are sparsely described.

    Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child’s RT.

    Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis.

    Results: The analysis revealed 5 categories summarizing the staff members’ experiences. These include the following: experiences of various emotions; care for the child and the child’s family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement.

    Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential.

    Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

  • 35. Östlund, Ulrika
    et al.
    Bäckström, Britt
    Lindh, Viveca
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundin, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Saveman, Britt-Inger
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nurses' fidelity to theory-based core components when implementing Family Health Conversations: a qualitative inquiry2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 3, p. 582-590Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND AIM: A family systems nursing intervention, Family Health Conversation, has been developed in Sweden by adapting the Calgary Family Assessment and Intervention Models and the Illness Beliefs Model. The intervention has several theoretical assumptions, and one way translate the theory into practice is to identify core components. This may produce higher levels of fidelity to the intervention. Besides information about how to implement an intervention in accordance to how it was developed, evaluating whether it was actually implemented as intended is important. Accordingly, we describe the nurses' fidelity to the identified core components of Family Health Conversation.

    INTERVENTION AND RESEARCH METHODS: Six nurses, working in alternating pairs, conducted Family Health Conversations with seven families in which a family member younger than 65 had suffered a stroke. The intervention contained a series of three-1-hour conversations held at 2-3 week intervals. The nurses followed a conversation structure based on 12 core components identified from theoretical assumptions. The transcripts of the 21 conversations were analysed using manifest qualitative content analysis with a deductive approach.

    RESULTS AND CONCLUSION: The 'core components' seemed to be useful even if nurses' fidelity varied among the core components. Some components were followed relatively well, but others were not. This indicates that the process for achieving fidelity to the intervention can be improved, and that it is necessary for nurses to continually learn theory and to practise family systems nursing. We suggest this can be accomplished through reflections, role play and training on the core components. Furthermore, as in this study, joint reflections on how the core components have been implemented can lead to deeper understanding and knowledge of how Family Health Conversation can be delivered as intended.

  • 36. Östlund, Ulrika
    et al.
    Bäckström, Britt
    Saveman, Britt-Inger
    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.
    A Family Systems Nursing Approach for Families Following a Stroke: Family Health Conversations2016In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 22, no 2, p. 148-171Article in journal (Refereed)
    Abstract [en]

    Stroke in midlife is a life altering, challenging experience for the whole family thereby necessitating a family approach to intervention. The aim of this study was to describe the experiences of 17 family members living in Sweden, including seven adult stroke patients (six males; one female) under the age of 65 who participated in a series of three nurse-led family conversations that were offered in each family's home. These Family Health Conversations (FamHC) were guided by the conceptual lens of Family System Nursing. Individual, semi-structured, evaluative interviews conducted with each participant one month after the FamHC were analyzed by qualitative content analysis. The FamHC were described by family members as a unique conversation that they had not previously experienced in health care contexts. Family members described possibilities for relational sharing and meaningful conversations as well as changes in family functioning that support the suitability of FamHC for family stroke care.

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