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  • 1.
    Hedov, Gerth
    et al.
    University of Gävle, Faculty of Health and Occupational Studies, Department of Health and Caring Sciences, Nursing science.
    Annerén, Göran
    Uppsala universitet.
    Bättre stöd åt nyblivna föräldrar till barn med livslångt funktionshinder: förslag till nya riktlinjer2010In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 107, no 22, p. 1477-1479Article in journal (Refereed)
  • 2.
    Hedov, Gerth
    et al.
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap.
    Annerén, Göran
    Uppsala universitet.
    Children with Down syndrome. How are new parents supported?1993In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 90, no 39, p. 3319-3320Article in journal (Refereed)
  • 3.
    Hedov, Gerth
    et al.
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap.
    Annerén, Göran
    Wikblad, Karin
    Self-perceived health in Swedish parents of children with Down's syndrome.2000In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 9, no 4, p. 415-422Article in journal (Refereed)
    Abstract [en]

    In this comparative study, self-perceived health was investigated in 165 parents of 86 children with Down's syndrome (DS), using the Swedish version of the SF-36 questionnaire. Questionnaires were mailed to parents of children with DS in a defined Swedish population. The results were compared with those in a randomised control group of parents from the Swedish SF-36 norm population. Mothers and fathers replied separately. Student's t-test with the Bonferroni correction was used for multiple statistical comparisons. The mothers of children with DS ('DS mothers') had significantly lower, less favourable scores than did the fathers of DS children ('DS fathers') in the Vitality (p < 0.0005) domain. Further, DS mothers spent significantly more time in caring for their child with DS than did the DS fathers (p < 0.0001). DS mothers also had lower scores than the mothers of the control group in the Vitality (p < 0.001) and Mental Health (p < 0.001) domains. DS fathers and control fathers differed significantly in the Mental Health domain (p < 0.002), but not otherwise. In conclusion, DS mothers showed poorer health than their spouses and the control mothers. No differences similar to those found between the DS mothers and DS fathers were observed between control mothers and control fathers.

  • 4.
    Hedov, Gerth
    et al.
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap.
    Annerén, Göran
    Wikblad, Karin
    Swedish parents of children with Down's syndrome.2002In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 16, no 4, p. 424-430Article in journal (Refereed)
    Abstract [en]

    Becoming parents of a child with Down's syndrome (DS) challenges the adjustment ability in parenthood. Individuals with higher sense of coherence (SOC) are supposed to manage stressors better than those with lower SOC. The aims of this study were to investigate parental self-perceived stress, SOC, frequency of gainful employment and amount of time spent on child care in Swedish DS parents (165 parents; 86 mothers, 79 fathers) and to compare those with control parents of healthy children (169 parents; 87 mothers, 82 fathers). The mean age of the children was 4.7 years. Parents responded to questionnaires separately including Hymovich's Parent Perception Inventory as stress measurement and Antonovsky's short version of the Orientation to Life. No differences concerning total employment rate were observed, but the DS mothers were more often employed part-time than control mothers. The DS parents did not spend more time on child care than the control parents and they did not differ in mean SOC score, but the DS parents perceived greater stress. The differences in stress, particularly between the DS and control mothers, were related to time-demanding areas. Parents with high SOC scores experienced significantly less self-perceived stress.

  • 5.
    Hedov, Gerth
    et al.
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap.
    Wikblad, Karin
    Annerén, Göran
    First information and support provided to parents of children with Down syndrome in Sweden: clinical goals and parental experiences.2002In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 91, no 12, p. 1344-1349Article in journal (Refereed)
    Abstract [en]

    When parents are informed that their newborn child has Down syndrome (DS), they often respond with a traumatic crisis reaction. The aims of this study were to assess the clinical goals regarding the first information and support provided to parents of newborn children with DS at the Swedish paediatric departments, and to analyse the parents' experiences of how they were first informed and treated. Data were collected during 1992-1993 from all of the 51 departments of paediatrics in Sweden. Information on the parents' experiences, collected retrospectively in 1996, was based on recollection by 165 parents of 86 children with DS born between 1989 and 1993 at 10 of the paediatric departments considered representative for Sweden. Seventy-five percent of the families were informed about the diagnosis within 24 h post partum. Some parents felt they were informed too late, and a few parents that they were told too soon. Half of the parents were satisfied with the timing. About 70% of the parents considered the information insufficient and 60% felt that they had been unsupported. Seventy percent would have liked more frequent information. Parental criticisms concerning the way in which the information was provided were that they received too much negative information about DS and that both the communication skills and the basic knowledge of DS on the part of the professionals could have been better. CONCLUSION: The Swedish paediatric departments fall short of their reported strong clinical goals regarding the initial information in Sweden, and improvements in this area are desirable.

  • 6.
    Hedov, Gerth
    et al.
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap. Unit of Paediatrics, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Wikblad, Karin
    Department of Welfare and Care, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University, Uppsala, Sweden.
    Sickness absence in Swedish parents of children with Down's syndrome: relation to self-perceived health, stress and sense of coherence.2006In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 50, no 7, p. 546-552Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The aims of present study were to study sickness absence among Swedish parents of children with Down's syndrome (DS) and to compare their rates of absence with those of control parents. Sickness absence data for 165 DS parents were compared with those for 174 control parents; all data were for the period 1997-2000. Sickness absence rates were also related to parental self-perceived health, stress and sense of coherence. METHODS: The self-administrated measures of parental self-perceived health, stress and sense of coherence were compared with the number of days of sickness absence. RESULTS: In about two-thirds of the parents in both the study and the control group, no days of sickness absence were registered. Six of the DS parents had remarkably large numbers of days of sickness absence (more than 100 per year). None of the control parents had such high sickness absence rates. It is speculated that there is a small group (less than 5%) of parents who are more vulnerable to the birth of a child with DS. Apart from these six DS parents, sickness absence was not more frequent among the DS parents than among the control parents. DS parents stayed at home to care for their sick DS child three times more often than control parents did for their non-disabled child. DS fathers took greater responsibility in the care of their temporarily sick child and stayed at home to care for the child even more often than control mothers did. DS parents with sickness periods experienced small deterioration in self-perceived health, significantly higher stress and decreased sense of coherence in comparison with parents without sickness periods. CONCLUSIONS: There was a great similarity in sick leave rates due to one's own sickness between DS and control parents, but a small group of DS parents (<5%) may be more vulnerable. DS fathers stayed at home to care for their sick DS child remarkably often.

  • 7. Karlsson, Bengt
    et al.
    Gustafsson, Jan
    Hedov, Gerth
    University of Gävle, Department of Caring Sciences and Sociology, Ämnesavdelningen för vårdvetenskap.
    Ivarsson, S A
    Annerén, Göran
    Thyroid dysfunction in Down's syndrome: relation to age and thyroid autoimmunity.1998In: Archives of Disease in Childhood, ISSN 0003-9888, E-ISSN 1468-2044, Vol. 79, no 3, p. 242-245Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The prevalence of thyroid disease is increased in Down's syndrome. Most available data come from cross sectional studies. AIMS: To study longitudinally thyroid function in patients with Down's syndrome in Uppsala county (85 patients) up to the age of 25 years. METHODS: Observational study based on yearly follow up in a children's clinic. Thyroid function tests were performed at each visit to the clinic. RESULTS: Hypothyroidism was found in 30 and hyperthyroidism was found in two of the 85 patients. No sex difference was seen. Half of the patients with hypothyroidism acquired the condition before the age of 8 years, but only one of them displayed thyroid autoantibodies at diagnosis. Most patients who developed hypothyroidism after this age had thyroid autoantibodies. In the prepubertal patients with hypothyroidism, growth velocity was lower during the year before the start of thyroxine treatment than during the year after treatment began; it was also lower than that of sex and age matched euthyroidic children with Down's syndrome. CONCLUSION: Thyroid dysfunction in patients with Down's syndrome is common in childhood. Consequently, annual screening is important. Autoimmune thyroid disease is uncommon in young children with Down's syndrome but is common after 8 years of age.

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