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  • 1.
    Wigander, Helena
    et al.
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Wester, Tomas
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Öjmyr-Joelsson, Maria
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Translation and cultural adaptation of the Hirschsprung’s Disease/Anorectal Malformation Quality of life Questionnaire (HAQL) into Swedish2014In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 30, no 4, p. 401-406Article in journal (Refereed)
    Abstract [en]

    Purpose

    Children with anorectal malformation or Hirschsprung’s Disease (HD) often have functional problems with constipation or incontinence. The Hirschsprung’s Disease/Anorectal malformation Quality of life Questionnaire (HAQL) developed in the Netherlands is a disease-specific instrument measuring the quality of life (QoL) of children and adolescents with fecal incontinence. HAQL includes several domains with questions concerning diet, laxatives, constipation, diarrhea, urine and fecal incontinence, in addition to social and emotional functioning, body image, and physical symptoms. The purpose of the study was to translate and culturally adapt the HAQL questionnaire into Swedish.

    Method

    The translation was carried out according to accepted translation guidelines and a backward/forward translation method was used.

    Results

    The translation correlated well with the original. All in all the Swedish and the Dutch versions agreed well. The Swedish translators chose to use a more simplified language in the questionnaires intended for the children, but used another choice of words in the proxy version and the adolescents’ version.

    Conclusions

    The translation of the HAQL instrument into Swedish gives us a disease-specific QoL instrument for children and adolescents born with HD and anorectal malformations (ARM). The translated and culturally adapted HAQL instrument is included in a survey regarding children and adolescents born with ARM.

  • 2.
    Wigander, Helena
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Wester, Tomas
    Karolinska Institutet / Karolinska University Hospital.
    Brodin, Ulf
    Karolinska Institutet.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.2019In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 35, no 5, p. 583-590Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim was to investigate the quality of life and bowel function in children with low anorectal malformations (ARM).

    ADDITIONAL AIM: To evaluate the Swedish version the Hirschsprung's Disease/Anorectal Malformation Quality of life Questionnaire (HAQL).

    METHODS: Forty-four children and their parents were invited to complete the HAQL and the Bowel Function Score (BFS). Healthy children participated as controls and completed the HAQL.

    RESULTS: Seventeen children and 18 mothers completed the HAQL. The children reported impaired function in the physical symptom (PH) fecal continence (FC) and laxative diet (LD) domains compared to controls. Compared with their mothers, they reported impaired physical function and more symptoms in the emotional functioning (EMF) and PH domains. 27 families completed the BFS; 63% reported normal bowel function, 33% moderate outcome and one patient, comprising 4%, poor outcome. Evaluation of the HAQL, FC, EMF and PH domains showed no obvious conflicts.

    CONCLUSIONS: The children did not differ much regarding their QoL, even though they appeared to have impaired bowel function and worse emotional functioning compared to controls. The mothers underestimated their children's physical symptoms and overestimated their emotional functioning. Evaluated domains in the HAQL appear to work as intended, but the questionnaire needs further development.

  • 3.
    Öjmyr-Joelsson, Maria
    et al.
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Lindholm, Torun
    Department of Psychology, Stockholm University, Stockholm.
    Children with high and intermediate imperforate anus: remembering and talking about medical treatment carried out early in life2008In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 24, no 9, p. 1009-1015Article in journal (Refereed)
    Abstract [en]

    Treatment of children with high and intermediate imperforate anus entails several different surgical procedures during the first 3–12 months of life, which are accompanied by a strict follow-up treatment regimen. It has not been studied whether the children remember this treatment carried out early in life. Research has shown that small children may demonstrate so-called non-verbal memories of salient events occurring in early childhood. The purpose was to examine whether children with imperforate anus showed distressing memories of previous medical treatment and whether parent–child dialog about medical treatment is related to the child’s psychosocial functioning later in life. Parents of 25 children (9 boys, 16 girls) with high and intermediate imperforate anus participated in the study. The mean age among the children was 10.5 years (range 8.0–13.6). A comparison group of 30 children (5 boys and 25 girls) with juvenile chronic arthritis also participated in the study. The mean age was 10.6 years (range 7.8–13.6). All parents answered the Child Behavior Checklist (CBCL/4-18) and a study-specific questionnaire. Children in both groups were reported to show distressing memories of early treatment. Children who had been talked to showed good psychosocial function and were in a better mood and less angry than those who had not been talked to. Parent–child discussions about the child’s experiences of medical treatment did not seem to be harmful or in any other way detrimental to the child, instead such discussions seemed to facilitate the child’s psychosocial functioning.

  • 4.
    Öjmyr-Joelsson, Maria
    et al.
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Children with high and intermediate imperforate anus: their experiences of hospital care2011In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 27, no 10, p. 1117-1122Article in journal (Refereed)
    Abstract [en]

    Purpose

    The purpose of this study was to examine the experiences of children with high and intermediate imperforate anus (IA), and specifically their experiences of hospital care.

    Methods

    Twenty-five children born with high and intermediate IA participated; 9 boys and 16 girls. The mean age was 10.5 years (range 8.0–13.6). Two control groups were involved in the study. A self-report questionnaire was used to gather the data concerning children’s experiences of hospital care. Items were scored on a 5-point Likert scale.

    Results

    The children’s responses on hospital care items scored high. The children with IA reported being less satisfied with the information given, and understood less why they needed to visit the hospital than did the children in the two control groups.

    Conclusion

    The children’s experiences of care seemed to be positive even though the children born with IA are subjected to invasive treatment. More research is called for in the unexplored area of information to the children, and particularly to the children born with a defect. Children’s views are important and should always be considered, as their answers most certainly reflect a genuine experience, contributing to the further development of their specific care.

  • 5.
    Öst, Elin
    et al.
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Health Sciences.
    Burgos, Carmen Mesas
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Health-related quality of life in children born with congenital diaphragmatic hernia2018In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, no 4, p. 05-414Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).

    METHODS: Between 1993 and 2003, a total of 102 children born with CDH were treated at Astrid Lindgren Children's hospital in Stockholm. In 2012, long-term survivors (n = 77) were asked to participate in the present study, which resulted in a 46% (n = 35) response rate. The KIDSCREEN-52 questionnaire was used for measuring HRQoL and a detailed review of medical records was performed.

    RESULTS: The study participants did not differ from the non-participants in terms of prenatal diagnosis, gender, side of lesion, method of surgical repair, time to intubation, need for ECMO support, or way of discharge from the hospital. Children born with CDH considered themselves to have a good HRQoL, as good as healthy Swedish children. There were only a few significant HRQoL differences within the group of children with CDH, although several median scores in ECMO-treated patients were somewhat lower. Correlations between child and parent scores on HRQoL were low.

    CONCLUSIONS: Health-related quality of life in children born with CDH is good overall, however, a correlation between the severity of the malformation and HRQoL cannot be excluded.

  • 6.
    Öst, Elin
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Health Sciences.
    Burgos, Carmen Mesas
    Karolinska Institutet / Karolinska University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia2018In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, no 6, p. 653-661Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim was to investigate social competence and behavioral and emotional problems in children and adolescents born with CDH.

    METHODS: All children born with CDH, treated in Stockholm 1990-2009, were invited to participate. After written consent, the Child Behavior Checklist or Adult Self-Report questionnaires were sent to participants. Of the 145 long-term survivors, 51% returned a completed questionnaire. Both the syndrome and competence scales were used and open-ended questions were analyzed with manifest content analysis.

    RESULTS: All parents of children aged 1.5-5 years and 90% of parents of children aged 6-18 years reported a normal range on the syndrome scale. Five parents indicated internalizing, but none externalizing behavior. All young adults achieved a normal score on the syndrome scale. Eighty-five percent had normal school achievement, 79% had normal social scores and 40% had normal activity levels. Significantly fewer boys (23%) were in the normal activity range compared with 67% of girls.

    CONCLUSIONS: The vast majority of all parents of children born with CDH scored no behavioral or emotional problems, furthermore, they reported normal social and school competence. However, the activity levels seemed to be reduced in children born with CDH.

  • 7.
    Öst, Elin
    et al.
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Technology and Welfare.
    Frenckner, Björn
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Mesas Burgos, Carmen
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Parenting stress among parents of children with congenital diaphragmatic hernia2017In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 33, no 7, p. 761-769Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).

    METHODS: Between 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children's Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.

    RESULTS: Parents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.

    CONCLUSIONS: Parental stress in parents of children with CDH seems to increase with the severity of the child's malformation. Mothers tend to score higher parental stress than fathers.

1 - 7 of 7
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