Kapitlet handlar om barn och ungdomar med Downs syndrom och deras möjligheter till fysisk aktivitet. Texten startar med att förklara vad Downs syndrom är och vilka svårigheter som kan uppstå vid fysisk aktivitet. Därefter beskrivs WHO:s rekommendationer för fysisk aktivitet för barn och ungdomar och sist kommer en beskrivning av en studie vi har genomfört med barn och ungdomar i åldrarna 8–18 år. Alla barn behöver röra på sig för att utvecklas optimalt. Det gäller även barn med Downs syndrom.

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.

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.

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.

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.

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.