Health-related quality of life of children and adolescents with functional disabilities in a northern Swedish county

Abstract

Findings suggest that there is an increased risk for children with functional disabilities other than hearing disabilities in northern Sweden to experience difficulties in various health domains and lowered general health.

Reporting of Cultural Factors in Autism Research Publications in Sweden: Application of the GAP-REACH Checklist

“…The results of the present review show that a study by Domellöf et al (2014) stands out as an interesting case, when cultural variables were mentioned (e.g., Bcultural setting,B cultural differences^) generating positive scores for items 1 and 2; however, these variables were not defined. Neither were cultural characteristics of the study participants described: a short demographic survey collected data on age, gender, diagnosis, and parental educational background.…”

“…The rationale for conducting the study was to replicate the US study and to contribute to evidence base on the earliest signs of autism and generating European practice guidelines on early identification and intervention. Domellöf et al (2014) explored health-related quality of life in children and adolescents with various types of disabilities including ASD in a cultural setting of northern Sweden. The rationale was to investigate how quality of life of these children would be influenced by cultural differences and socioeconomic factors found in one specific geographic area of Sweden.…”

“…However, they do register the immigrants' country of origin… [that]… can sometimes be used as a proxy for ethnicity^(p.19). Indeed, Bildt et al (2015) No Yes No (= not described) Domellöf et al (2014) No Yes No (= not described) Fernell et al (2015) Yes Yes The 1st cohort group: Bthe Stockholm Somali group^; the 2nd cohort group based in Gothenburg categorized as (a) Swedish, (b) miscellaneous (non-Scandinavian, South America, East Africa), (c) African/Middle East. Gardner et al (2015) Yes No Maternal country of birth categorized as (a) mother born in Sweden, (b) mother born outside Sweden Idring et al (2015) Yes No Maternal country of birth categorized as (a) mother born in Sweden, (b) mother born outside Sweden with low/high Human Development Index (HDI) Idring et al (2014) Yes Yes Maternal country of birth categorized as (a) mother born in Sweden, (b) mother born in Europe outside Sweden, (c) mother born outside Europe Lee et al (2015) Yes No Maternal country of birth categorized as (a) mother born in Sweden, (b) mother born in Europe outside Sweden, (c) mother born outside Europe Löfkvist et al (2014) Yes Yes Swedish language proficiency Lundström et al (2015b) Yes No No (= not described) McEvilly et al (2015) Yes No No (= not described) Selten et al (2015) Yes No Personal or parental history of migration Törn et al (2015) Yes No No (= not described) Zander et al (2015) Yes Yes Maternal country of origin a Coding based on the results reported by the first author/coder the Swedish Personal Data Act (PUL 1998) did not allow registering sensitive personal information such as race, ethnicity or other culture-related data such as religion.…”

“…Firstly, the study aimed to explore health-related quality of life (HRQoL) in children and adolescents in relation to their disability using the Swedish child-friendly version of the instrument-the EuroQoL Five Dimensions Health Questionnaire (EQ-5D-Y)-introduced and tested by the EuroQol Group (Burström et al 2010;Ravens-Sieberer et al 2010). In this regard, the study by Domellöf et al (2014) can be viewed as an example of the cross-cultural application of the EQ-5D-Y in the cultural context of the Swedish health-care system, which explains why the REC terms were mentioned in the study. Secondly, as surveys were administered in Swedish, the high nonresponse rate (70.2%) to surveys could be, partially, due to possible unwillingness of non-Swedish-speaking respondents to participate in the study (E. Domellöf, personal communication, January 29, 2018).…”

“…The re-coding of the full sample of the articles by the first coder revealed that items 1 or 2 scored initially as negative were coded as positive for three studies Gardner et al 2015;Lundström et al 2015a); item 4-from negative to positive for two studies Lundström et al 2014), and item 11-from negative to positive for one study (Domellöf et al 2014). These changes in coding resulted in higher total GAP-REACH scores (Table 6).…”