| 1. |
- Bullinger, Monika, et al.
(författare)
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Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument.
- 2013
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Ingår i: Health and quality of life outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: When evaluating the outcomes of treatment in paediatric endocrinology, the health-related quality of life (HrQoL) of the child is to be taken into consideration. Since few self--reported HrQoL instruments exist for children with diagnosed short stature (dSS), the objective of this study was to develop and psychometrically test a targeted HrQoL instrument for use in multinational clinical research. METHODS: The target population were short stature (height < -2 SDS) children and adolescents (age 8--12 and 13--18 years) with a diagnosis of growth hormone deficiency (GHD) or idiopathic short stature (ISS), differing in growth hormone treatment status. Focus group discussions for concept and item generation, piloting of the questionnaire with cognitive debriefing, and instrument field testing with a retest were conducted simultaneously in five countries. After qualitative and preliminary quantitative analyses, psychometric testing of field test data in terms of reliability and validity including, confirmatory factor analyses (CFA) was performed. RESULTS: Following item generation from focus group discussions, 124 items were included in a pilot test with a cognitive debriefing exercise providing preliminary feedback on item and domain operating characteristics. A field test with 268 participants showed high internal consistency reliabilities (alpha 0.82 -- 0.95), good correlations with generic measures (up to r = .58), significant known group differences (e.g. in height: F = 32, df 244, p < 0.001) and an acceptable CFA model fit suggesting construct validity of the three-domain core structure with 22 items, supplemented by three mediator domains with 29 items. CONCLUSIONS: The QoLISSY questionnaire is a promising step forward in assessing the impact of dSS on HrQoL. It is based on items generated from the subjective experience of short stature children referred for endocrine investigation, is validated for use in five languages and it is easy to administer in clinical and research settings.
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| 2. |
- Dellenmark-Blom, Maria, 1983, et al.
(författare)
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Factors of family impact in a Swedish-German cohort of children born with esophageal atresia
- 2022
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Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Background After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA. Methods One parent each of a child with EA (2-18 years) in 180 families from Sweden and Germany answered the PedsQL (TM) Family Impact Module as the dependent variable. The independent variables were the child's parent-reported health-related quality of life as measured by PedsQL (TM) 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records. Results Stepwise multivariable regression analysis showed a multifactorial model of the total family impact scores (R-2 = 0.60), with independent factors being the child's overall generic health-related quality of life, school-absence >= 1/month, severe tracheomalacia, a family receiving carer's allowance, and a parent with no university/college education, p < 0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child's feeding (R-2 = 0.35) and digestive symptoms (R-2 = 0.25) explained more in the variation of scores than the child's respiratory symptoms (R-2 = 0.09), p < 0.0001. Conclusions Family functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members' perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.
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| 3. |
- Dellenmark-Blom, Maria, 1983, et al.
(författare)
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Family screening for neurodevelopmental problems and its associations with child cognitive function enable tailored treatment for childhood obesity
- 2024
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Ingår i: ACTA PAEDIATRICA. - 0803-5253 .- 1651-2227.
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To identify neurodevelopmental disorders in children with obesity, and investigate associations to cognitive functions as well as parents' self-reported neurodevelopmental problems. Methods: Eighty children were included at two outpatient obesity clinics in Sweden 2018-2019. Of these, 50 children without previously diagnosed neurodevelopmental disorders were screened, and so were their parents. Children who screened positive for neurodevelopmental problems were referred to a specialised psychiatry unit for further diagnosis. Test results of cognitive functioning were compared with the norm and between study groups by neurodevelopmental diagnoses. Results: Of the screened families, 17/50 children were diagnosed by the psychiatric unit with attention deficit-hyperactivity disorder (ADHD) and 15/82 parents screened positive for neurodevelopmental problems. Having a mother who screened positive for neurodevelopmental problems was associated with child ADHD (p < 0.05). The children's full-scale intelligence quotient (92.86 +/- 12.01, p < 0.001) and working memory index (90.62 +/- 12.17, p < 0.001) were lower than the norm. Working memory index was lower in children with ADHD compared to without ADHD: 84.76 +/- 9.58 versus 94.09 +/- 12.29 (p <= 0.01). Executive constraints were associated with verbal deviances. Conclusion: Increased awareness is needed about the overlap between neurodevelopmental problems and obesity in obesity clinics.
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| 4. |
- Sand, Peter, et al.
(författare)
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Family dynamics when a child becomes chronically ill: Impact of type 1 diabetes onset in children and adolescents
- 2018
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Ingår i: Nordic Psychology. - : Informa UK Limited. - 1901-2276 .- 1904-0016. ; 70:2, s. 97-114
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Tidskriftsartikel (refereegranskat)abstract
- © 2017 The Editors of Nordic Psychology The overall aim of the study was to explore the process of family dynamics when a child has been diagnosed with type one diabetes mellitus (T1DM). The study sample consisted of family members of 20 children with T1DM aged 3–17years. Twenty-nine parents and seven siblings participated in nine focus group interviews. Five individual interviews were conducted. Focus group discussions and individual interviews were audiotaped, transcribed, and analyzed using a grounded theory methodology. The findings are outlined in the core category, the child’s sudden loss of health, and in three related categories: preconceptions, psychological reactions, and impact on family relationships. Preconceptions about T1DM played a critical role when trying to grasp and respond to the diagnosis. Most cohabiting mothers reported a psychological reaction of shock, which the separated mothers didn’t. Fathers paid more attention to the siblings and to the lifelong disease. Mothers of older children with T1DM were more concerned about the child’s future than the mothers of the younger children. In terms of family relationships, the psychological bond to a younger child was strengthened by the diagnosis, as manifested by increased control in social situations. Adolescent siblings showed a greater degree of empathy toward the child with T1DM, whereas preadolescents and preschool siblings tended to fall into rivalry with the child with T1DM. To conclude, in a clinical setting, this knowledge could help the diabetes team in supporting the families in their early process of adaption after the diabetes onset.
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