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  • 1.
    Annerén, Göran
    et al.
    Uppsala universitet.
    Hedov, Gerth
    Uppsala universitet.
    Wester, Ulrika
    Uppsala universitet.
    Downs syndrom: ny kunskap ställer höga krav på medicinsk vård och habilitering1999In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 76, no 1, p. 71-79Article in journal (Refereed)
  • 2.
    Bhatt, Meghna
    et al.
    Kenya.
    Hedov, Gerth
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO).
    Modi, Bhavesh
    An explorative study comparing the knowledge of tobacco use and tobacco cessation program among school going boys and girls: a study in Ahmedabad district in Western India2018In: National Journal of Community Medicine, ISSN 0976-3325, National Journal of Community Medicine, ISSN 0976-3325, Vol. 9, no 6, p. 457-462Article in journal (Refereed)
    Abstract [en]

    Abstract:

    Introduction: Dermatoglyphics is the study of finger prints from toes, fingers palms, and soles of animals and humans. Dermatoglyphic examination is opening up as an exceptionally tool for initial investigations into circumstances with an alleged genetic basis. The current study was conducted to determine worthiness of dermatoglyphics in prophesying genetic vulnerability of children to dental caries via cost-effective means.

    Materials and Methods: Cross-sectional study was undertaken on 100 children of age group between 4–14 years divided equally into two groups namely: Caries-free group (def/DMF score “0”) and Caries group (def/DMF score more than or equal to “5”). Both were subdivided into 25 males and 25 females. Each child’s handprints were taken and observed for dermatoglyphic pattern; total finger ridge count TFRc and atd angle.

    Results: Whorls were found more in caries group whereas ulnar loops were more common in caries free group. Total finger ridge count was significantly higher in caries group. The atd angles did not show any significant differences among caries and caries free group.

    Conclusion: Dermatoglyphic pattern variation may be an impor-tant tool in identification of people at risk of developing dental caries, which will enable an early detection and prevention of the disease.

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  • 3.
    Garmy, Pernilla
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hedov, Gerth
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO).
    Einberg, Eva-Lena
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Att möta nya förutsättningar: så har vi utvecklat undervisningen i vardagspediatrik2018In: Högskolepedagogisk debatt, ISSN 2000-9216, no 2, p. 14-17Article in journal (Other academic)
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  • 4.
    Hedov, Gerth
    Kristianstad University, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Information till föräldrar som fått ett barn med funktionsnedsättning: exemplet Downs syndrom2017In: Barnsliga sammanhang: forskning om barns och ungdomars hälsa, välbefinnande och delaktighet / [ed] Bo Nilsson & Eva Clausson, Kristianstad: Kristianstad University Press , 2017, p. 7-20Chapter in book (Other academic)
    Abstract [sv]

    Detta kapitel handlar om arbetet med att utforma riktlinjer för hur  man möter och ger stöd till föräldrar som fått ett barn med funktionsnedsätt- ning (Downs syndrom). Tidsmässigt rör det om den första tiden för föräldrarna, om vad som sägs till dem och vad som görs inom förloss- nings- och barnsjukvården. Hur reagerar föräldrarna i den för dem nya, oväntade, okända och sannolikt skrämmande situationen? Vad vill för- äldrarna ha och vad behöver de ha och inte minst vad ges de för initialt omhändertagande? De nya nationella medicinska riktlinjerna har för första gången fått ett eget avsnitt som handlar om just detta första om- händertagande. Avsnittet har sin utgångspunkt i både beprövad erfaren- het och empirisk forskning. Vårdprogrammet presenterades 21 mars 2013.

    Detta arbete kan också ses som ett exempel på hur man kan ”fånga upp” ett vårdproblem från empirin, processa det genom  forskningsprocessen och hur man sedan implementera resultatet åter till empirin.

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  • 5.
    Hedov, Gerth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Swedish Parents of Children with Down Syndrome: A study on the initial information and support, and the subsequent daily life2002Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    In this study 165 Swedish parents of young children with Downs’s syndrome (DS) were investigated regarding their perception of the quality of the first information and support received after the birth of the child. The parents’ opinions were compared with clinical routines at the paediatric clinics regarding these issues. Strong clinical ambitions fell short, however, since 70 % of the parents felt insufficiently informed; 56 % felt unsupported, and the timing of the disclosure varied between 0 hour to >5 days. On the basis of a grounded theory analysis the parents’ written narratives regarding the quality of the first information and support were analysed to better understand the reasons underlying the parental dissatisfaction. Criticisms were raised by the parents concerning: the low communication skills by professionals; the lack of privacy; too much negative information; and an unmet desire to early meet other DS parents.

    The implications of being DS parents regarding their daily life were examined by measuring parental health, stress, sense of coherence, employment and sick leave rates. Results were compared with those in a randomly selected group of parents of healthy age-matched children. The similarities between the DS and control parents were more pronounced than the differences regarding divorce rates, siblings in the family, time spent on child care, employment and sick leave rates, and their self-perceived health, stress, and sense of coherence. However, self-perceived health of the DS mothers was impaired and stress was increased. A small group of DS parents (5 mothers and 1 father) had an extremely high rate of sick leave and no such group was seen in the control parents. In addition, the DS mothers stayed at home because of the child’s sickness most frequently and the DS fathers stayed at home for this reason more than control mothers.

    Conclusions: Existing guidelines for optimal first information and support of new parents of children with DS are not always followed in Sweden. Qualitative clinical improvements from the parents’ perspective are proposed. Most DS parents live an ordinary family life in respect to the measured parameters, but the risk for health deterioration, particularly in DS mothers, might need attention.

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  • 6.
    Hedov, Gerth
    et al.
    Högskolan i Gävle.
    Annerén, Göran
    Uppsala universitet.
    Barn med Downs syndrom: hur tas nyblivna föräldrar om hand?1993In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 90, no 39, p. 3319-20Article in journal (Refereed)
  • 7.
    Hedov, Gerth
    et al.
    Karlstads universitet.
    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)
    Abstract [sv]

    Denna artikel har som syfte att uppgradera riktlinjerna för den första informationen och stödet till föräldrar som fått barn med medfödda funktionshinder, tillstånd som är uppenbara omedelbart efter födseln. Slutsatserna är hämtade från en svensk studie om nyblivna föräldrar till ett barn med Downs syndrom – den senaste empiriska nationella genomgången av föräldrars syn på hur informationen och stödet fungerar, publicerad redan 2002.

  • 8.
    Hedov, Gerth
    et al.
    Unit of Paediatrics, Department of Women's and Children's Health, Uppsala University.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University.
    Wikblad, Karin
    Department of Public Health and Caring Sciences, Uppsala University.
    Self-perceived health in Swedish parents of children with Down's syndrome2000In: 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.

  • 9.
    Hedov, Gerth
    et al.
    Unit of Paediatrics, Department of Woman and Child Health, Uppsala University.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University.
    Wikblad, Karin
    Department of Welfare and Care, Faculty of Health Sciences, Linköping University.
    Swedish parents of children with Down's syndrome: parental stress and sense of coherence in relation to employment rate and time spent in child care2002In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 16, no 4, p. 424-430Article in journal (Refereed)
    Abstract [sv]

    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.

  • 10.
    Hedov, Gerth
    et al.
    Unit of Paediatrics, Department of Women's and Children's Health, Uppsala University.
    Wikblad, Karin
    Department of Medicine and Care, Faculty of Health Sciences, Linkping University.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University.
    First information and support provided to parents of children with Down syndrome in Sweden: clinical goals and parental experiences2002In: 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.

  • 11.
    Hedov, Gerth
    et al.
    Department of Caring Sciences and Sociology, University of Gävle.
    Wikblad, Karin
    Department of Welfare and Care, Faculty of Health Sciences, Linköping University.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University.
    Sickness absence in Swedish parents of children with Down's syndrome: relation to self-perceived health, stress and sense of coherence2006In: 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.

  • 12. Karlsson, A.
    et al.
    Nilsson, M.
    Holmström, J.
    Hedov, Gerth
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap II. Kristianstad University, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO).
    Gastric bypass surgery: patient experiences of psychological and physical perspective2014In: Obesity Surgery, ISSN 0960-8923, E-ISSN 1708-0428, Vol. 24, no 7, p. 1022-Article in journal (Refereed)
  • 13.
    Karlsson, Bengt
    et al.
    Department of Paediatrics, Uppsala University Children’s Hospital.
    Gustafsson, Jan
    Department of Paediatrics, Uppsala University Children’s Hospital.
    Hedov, Gerth
    Department of Clinical Genetics, Uppsala University Children’s Hospital.
    Ivarsson, S.A.
    Department of Paediatrics, General Hospital, Malmö.
    Annerén, Göran
    Department of Clinical Genetics, Uppsala University Children’s Hospital.
    Thyroid dysfunction in Down's syndrome: relation to age and thyroid autoimmunity1998In: 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.

  • 14.
    Sollerhed, Ann-Christin
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, Faculty of Education, Avdelningen för humaniora.
    Hedov, Gerth
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO).
    Fysisk aktivitet bland barn och ungdomar med Downs syndrom2019In: Barnsliga sammanhang: forskning ombarns och ungdomarsuppväxt och livsvillkor / [ed] Eva K. Clausson & Bo Nilsson, Kristianstad: Kristianstad University Press , 2019, p. 61-75Chapter in book (Other academic)
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  • 15.
    Sollerhed, Ann-Christin
    et al.
    Kristianstad University, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, School of Education and Environment, Avdelningen för Humaniora.
    Hedov, Gerth
    Kristianstad University, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Physical activity among children with Down’s Syndrome2017Conference paper (Other academic)
    Abstract [en]

    Introduction, aim and theoretical framework

    About 150 children with Down Syndrome (DS) are born in Sweden every year. According to the Swedish National Sports Confederation, these children have the right to play sports and to be physically active like other children. Sports for children should be based on children’s own needs and circumstances and take into account of the variations in development. Children with DS have been shown to have low fitness, poor motor skills, very lo participation in sports activities and a high prevalence of overweight (Whitt-Glover et al, 2006). The aim of the study was to investigate sports habits and physical activity (PA) among children and adolescents with DS in the age 8-18 years in Sweden.

    Method

    Information was obtained by a questionnaire performed among families with children with DS, all information was given by the parents. Furthermore, new additional questions focusing on PA and sports participation, attitudes and living habits among both children and adults were included. The sample consisted of 310 children with DS and their families in Sweden. The statistics were carried out by using SPSS. Additional information on children’s PA was given in written narratives. The written information was analyzed with qualitative text analyses.

    Results

    Overall activity patterns among children with DS seemed to be quite similar to the patterns among other childre without disabilities. A polarized picture emerged in which some were very active and some were completely inactive. Relationships between parents’ own level of PA and children’s activity could be shown, as well as associations between parental involvement in the activities and children’s activity levels. The parents expressed the difficulties children with DS have to participate in sports together with other children. Three main areas could be identified as barriers. 1. Time consuming. The parents stated that it was much time consuming to organize opportunities fo children with DS to engage in sports activities in the family situation. 2. Characteristics of the children. The children are slow and sometimes difficult to motivate which take a lot of effort. They also have physical problems, for example poor motor skills, perceptual difficulties, poor movement planning which exclude participation in many activities. Some parents also indicated a lack of endurance capacity and rapid mood swings as additional factors that contributed to the difficulties. 3. Society and sports clubs. Parents stated that there were few possibilities for PA which are manageable for children with DS offered by the society and sport clubs. Parents didn’t experience any negative reactions from other children without disabilities or their parents when children with DS participated in sports activities with other children. However, they had a feeling that the children with DS slowed down th tempo for the whole group.

    Discussion and conclusions

    The results highlight the barriers that parents of children with DS experience as detrimental for how much PA children with DS can undertake and the effect that common characteristics associated with DS can have on main taining an active lifestyle. Society and sport clubs seem to have a small range of activities for children with DS.

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