| 1. |
- Bergh, Ingrid, et al.
(författare)
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Sense of coherence over time for parents with a child diagnosed with cancer
- 2012
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Ingår i: BMC Pediatrics. - : BioMed Central. - 1471-2431 .- 1471-2431. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: When a child is diagnosed with childhood cancer this creates severe stress in the parents. The aim of the study was to describe the sense of coherence and its change over time in a sample of parents of children diagnosed with cancer.Methods: The Swedish version of SOC (29 items) was used to measure the parents’ (n = 29) sense of coherence. Data were collected at four time-points: Time-point 1 at the time of diagnosis; time-point 2 during the treatment; time-point 3 after the child had completed their treatment and time-point 4 when the child had been off treatment for some years or had died.Results: The results showed that SOC in the investigated population is not stable over time. The parents decreased in total SOC between time-points 1, 2 and 3. Mothers had significantlyweaker total SOC score including the components Manageability and Meaningfulness at time-points 1 as well time-point 2 compared to the fathers. However, for the component Comprehensibility no significant differences were shown between mothers and fathers. This study indicates that mothers’ and fathers’ SOC scores change over time during the child’s cancer trajectory. However, the pattern in these changes varies between mothers and fathers.Conclusions: This study indicates that mothers and fathers may have different support needs during their child’s cancer trajectory.
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| 2. |
- Eapen, Valsamma, et al.
(författare)
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"Are you available for the next 18 months?" - methods and aims of a longitudinal birth cohort study investigating a universal developmental surveillance program: the ’Watch Me Grow’ study
- 2014
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 14, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Universal developmental surveillance programs aimed at early identification and targeted early intervention significantly improve short-and long-term outcomes in children at risk of developmental disorders. However, a significant challenge remains in providing sufficiently rigorous research and robust evidence to inform policy and service delivery. This paper describes the methods of the ’Watch Me Grow’ study that aims to maximise accurate early detection of children with developmental disorders through a partnership formed between policy makers, service providers and researchers. Methods/Design: A mixed methods study design was developed consisting of: (1) a qualitative study of parents and health service providers to investigate barriers and enablers of developmental surveillance; (2) recruitment of a birth cohort and their longitudinal follow-up to 18 months of age to: a) assess risk factors for not accessing existing developmental surveillance programs and b) estimate the prevalence of children identified with developmental risk; (3) comparison of surveillance outcomes with a reference standard at 18 months of age to assess the diagnostic test accuracy of existing and alternative developmental surveillance tools; and (4) comparison of developmental surveillance models to inform policy recommendations. Data linkage will be used to determine the uptake and representativeness of the study participant group versus non-participants. Discussion: The Watch Me Grow study is expected to provide a collaborative opportunity to enhance universal developmental surveillance for early accurate identification of developmental risk. This will also provide quality evidence about identification of developmental risk and access to services to be embedded in existing practice with linkages to policy development.
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| 3. |
- Myléus, Anna, et al.
(författare)
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Early infections are associated with increased risk for celiac disease : an incident case-referent study
- 2012
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431 .- 1471-2431. ; 12, s. 194-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Celiac disease is defined as a 'chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals'. Sweden has experienced an "epidemic" of celiac disease in children below two years of age. Celiac disease etiology is considered multifactorial; however, little is known regarding potential risk-or protecting factors. We present data on the possible association between early infectious episodes and celiac disease, including their possible contribution to the Swedish celiac disease epidemic. Methods: A population-based incident case-referent study (475 cases, 950 referents) with exposure information obtained via a questionnaire (including family characteristics, infant feeding, and the child's general health) was performed. Celiac disease cases were diagnosed before two years of age, fulfilling the diagnostic criteria of the European Society for Pediatric Gastroenterology, Hepatology and Nutrition. Referents were randomly selected from the national population register after fulfilling matching criteria. The final analyses included 954 children, 373 (79%) cases and 581 (61%) referents, with complete information on main variables of interest in a matched set of one case with one or two referents. Results: Having three or more parental-reported infectious episodes, regardless of type of infection, during the first six months of life was associated with a significantly increased risk for later celiac disease, and this remained after adjusting for infant feeding and socioeconomic status (odds ratio [OR] 1.5; 95% confidence interval [CI], 1.1-2.0; P=0.014). The celiac disease risk increased synergistically if, in addition to having several infectious episodes, infants were introduced to dietary gluten in large amounts, compared to small or medium amounts, after breastfeeding was discontinued (OR 5.6; 95% CI, 3.1-10; P<0.001). Conclusion: This study suggests that having repeated infectious episodes early in life increases the risk for later celiac disease. In addition, we found a synergistic effect between early infections and daily amount of gluten intake, more pronounced among infants for whom breastfeeding had been discontinued prior to gluten introduction. Regarding contribution to the Swedish celiac disease epidemic, which partly was attributed to concurrent changes in infant feeding, early infections probably made a minor contribution via the synergistic effect with gluten amount.
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| 4. |
- Rosén, Anna, 1975-, et al.
(författare)
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Balancing health benefits and social sacrifices : a qualitative study of how screening-detected celiac disease impacts adolescents' quality of life
- 2011
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Ingår i: BMC Pediatrics. - : BioMed Central. - 1471-2431 .- 1471-2431. ; 11, s. 32-
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundCeliac disease often goes undiagnosed. Mass screening might be an option to reduce the public health burden of untreated celiac disease. However, mass screening is still controversial since it is uncertain whether the benefits of early detection outweigh the possible negative consequences. Before implementation of screening programs, the experiences of those being identified as cases should be considered. The aim of our study was to explore how screening-detected celiac disease impacts adolescents' quality of life, as perceived by themselves and their parents.MethodsAll adolescents (n = 145) with screening-detected celiac disease found in a Swedish screening study, and their parents, were invited to share their experiences in a qualitative follow-up study. In total, we have information on 117 (81%) of the adolescents, either from the adolescents themselves (n = 101) and/or from their parent/s (n = 125). Written narratives were submitted by 91 adolescents and 105 parents. In addition, 14 focus group discussions involving 31 adolescents and 43 parents were conducted. Data was transcribed verbatim and analyzed based on a Grounded Theory framework.ResultsThe screening-detected celiac disease diagnosis had varying impact on quality of life that related both to changes in perceived health and to the adolescents' experiences of living with celiac disease in terms of social sacrifices. Changes in perceived health varied from "healthy as anyone else with no positive change" to "something was wrong and then changed to the better", whereas experiences of living with celiac disease ranged from "not a big deal" to "treatment not worth the price". Perceptions about living with celiac disease and related coping strategies were influenced by contextual factors, such as perceived support from significant others and availability of gluten-free products, and were developed without a direct relation to experiencing changes in perceived health.ConclusionsScreening-detected celiac disease has varying impact on adolescents' quality of life, where their perceived change in health has to be balanced against the social sacrifices the diagnosis may cause. This needs to be taken into account in any future suggestion of celiac disease mass screening and in the management of these patients.
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| 5. |
- Andriesse, Hanneke, et al.
(författare)
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Motor ability in children treated for idiopathic clubfoot. A controlled pilot study
- 2009
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: To study motor ability at seven years of age in children treated for idiopathic clubfoot and its relation to clubfoot laterality, foot status and the amount of surgery performed. Methods: Twenty children (mean age 7.5 years, SD 3.2 months) from a consecutive birth cohort from our hospital catchments area (300.000 inhabitants from southern Sweden) were assessed with the Movement Assessment Battery for Children (MABC) and the Clubfoot Assessment Protocol (CAP). Results: Compared to typically developing children an increased prevalence of motor impairment was found regarding both the total score for MABC (p < 0.05) and the subtest ABC-Ball skills (p < 0.05). No relationship was found between the child's actual foot status, laterality or the extent of foot surgery with the motor ability as measured with MABC. Only the CAP item "one-leg stand" correlated significantly with the MABC (rs = -0.53, p = 0.02). Conclusions: Children with idiopathic clubfoot appear to have an increased risk of motor activity limitations and it is possible that other factors, independent of the clinical status, might be involved. The ability to keep balance on one leg may be a sufficient tool for determining which children in the orthopedic setting should be more thoroughly evaluated regarding their neuromotor functioning.
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| 6. |
- Ellaithi, Mona, et al.
(författare)
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A case of Cornelia de Lange syndrome from Sudan
- 2007
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Brachmann de Lange syndrome (BDLS) is a multiple congenital anomaly syndrome characterized by a distinctive facial appearance, prenatal and postnatal growth deficiency, psychomotor delay, behavioral problems, and malformations of the upper extremities. CASE PRESENTATION: Here we present for the first time a case of BDLS from Sudan, a 7-month-old female infant, who was referred as a case of malnutrition. The patient was from a Sudanese western tribe. Clinical investigation showed that the child was a classical case of BDLS, but with some additional clinical findings not previously reported including crowded ribs and tied tongue. CONCLUSION: Reporting BDLS cases of different ethnic backgrounds could add nuances to the phenotypic description of the syndrome and be helpful in diagnosis.
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| 7. |
- Ellaithi, M, et al.
(författare)
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A del(X)(p11) carrying SRY sequences in an infant with ambiguous genitalia
- 2006
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 6:11
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: SRY (sex-determining region, Y) is the gene responsible of gonadal differentiation in the male and it is essential for the regular development of male genitalia. Translocations involving the human sex chromosomes are rarely reported, however here we are reporting a very rare translocation of SRY gene to the q -arm of a deleted X chromosome. This finding was confirmed by cytogenetic, fluorescent in situ hybridization (FISH) and polymerase chain reaction (PCR). CASE PRESENTATION: A 7-month infant was clinically diagnosed as an intersex case, with a phallus, labia majora and minora, a blind vagina and a male urethra. Neither uterus nor testes was detected by Ultrasonography. G-banding of his chromosomes showed 46,X,del(X)(p11) and fluorescent in situ hybridization (FISH) analysis showed a very small piece from the Y chromosome translocated to the q-arm of the del(X). Polymerase chain reaction (PCR) analysis revealed the presence of material from the sex-determining region Y (SRY) gene. CONCLUSION: It is suggested that the phenotype of the patient was caused by activation of the deleted X chromosome with SRY translocation, which is responsible for gonadal differentiation.
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| 8. |
- Hansen, Kristina, et al.
(författare)
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Early exposure to secondhand tobacco smoke and the development of allergic diseases in 4 year old children in Malmo, Sweden
- 2010
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Earlier studies have shown an association between secondhand tobacco smoke and allergy development in children. Furthermore, there is an increased risk of developing an allergy if the parents have an allergy. However, there are only few studies investigating the potential synergistic effect of secondhand tobacco smoke and allergic heredity on the development of an allergy. Methods: The study was population-based cross-sectional with retrospective information on presence of secondhand tobacco smoke during early life. The study population consisted of children who visited the Child Health Care (CHC) centres in Malmo for their 4-year health checkup during 2006-2008 and whose parents answered a self-administered questionnaire (n = 4,278 children). The questionnaire was distributed to parents of children registered with the CHC and invited for the 4-year checkup during the study period. Results: There was a two to four times increased odds of the child having an allergy or having sought medical care due to allergic symptoms if at least one parent had an allergy, while there were rather small increased odds related to presence of secondhand smoke during the child's first month in life or at the age of 8 months. However, children with heredity for allergies and with presence of secondhand tobacco smoke during their first year in life had highly increased odds of developing an allergy and having sought medical care due to allergic symptoms at 4 years of age. Thus, there was a synergistic effect enhancing the independent effects of heredity and exposure to secondhand tobacco smoke on allergy development. Conclusions: Children with a family history of allergies and early exposure to secondhand tobacco smoke is a risk group that prevention and intervention should pay extra attention to. The tobacco smoke effect on children is an essential and urgent question considering it not being self chosen, possibly giving life lasting negative health effects and being possible to reduce.
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| 9. |
- Hjern, Anders, et al.
(författare)
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Perinatal complications and socio-economic differences in cerebral palsy in Sweden - a national cohort study
- 2008
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is a controversy regarding the existence of a socio-economic gradient for cerebral palsy. Perinatal emergencies and preterm birth increase the risk for the offspring to develop cerebral palsy. The aim of this study was to investigate the association of socio-economic indicators with cerebral palsy (CP) and the role of perinatal health as mediator of this association. Methods: Register study of a national cohort of 805,543 children born 1987-93, including 1,437 children with cerebral palsy that were identified in hospital discharge data from national registers. Socio-economic indicators of the household were taken from the Census of 1985. Logistic regression and chi-square analyses of linearity were used to test hypotheses. Results: There was a linear association between the incidence of CP (excluding cases caused by registered injuries or malformations) as well as of major perinatal indicators and the socioeconomic status (SES) of the household of the mother (p < 0.001). Children in households with low SES had a higher odds ratio of CP ( OR 1.49 [95% C.I. 1.16-1.91]) compared with high SES after adjustment for demographic confounders. This OR decreased to 1.36 (1.05-1.71) after adjustment for perinatal indicators with preterm birth as the most important mediating variable. Conclusion: This study suggests that there is a continuous socio-economic gradient for CP in Sweden. Further studies in more complete populations of children with cerebral palsy are needed to confirm this. Perinatal complications seem to mediate some of this
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| 10. |
- Jönsson, Lisbeth, et al.
(författare)
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A multi-disciplinary education process related to the discharging of children from hospital when the child has been diagnosed with type 1 diabetes - a qualitative study
- 2010
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Worldwide, insulin-dependent type 1 diabetes is one of the most frequently diagnosed long-term endocrine disorders found in children and the incidences of this diseased is still increasing. In Sweden the routines are, according to national guidelines, when the child is diagnosed with type 1 diabetes, the child and its family remains at the hospital for about two weeks. There is limited knowledge about how a diabetes team handles a child and its family from admission to discharge, therefore the purpose of this study was to seek a deeper understanding of how the diabetes team's parent/child education process works, from admission to discharge, among families with a child newly diagnosed with type 1 diabetes. Methods: Qualitative data collection was used. Four focus-group interviews, with a sample of three diabetes teams from different paediatric hospitals in the south western part of Sweden, were conducted and the data recorded on tape and then analysed using qualitative content analysis. Results: The results indicate that achieving a status of self-care on the part of the patient is the goal of the diabetes education programme. Part of the programme is aimed at guiding the child and its parents towards self-help through the means of providing them with knowledge of the disease and its treatment to enable the whole family to understand the need for cooperation in the process. To do this requires an understanding, by the diabetes team, of the individualities of the family in order to gain an overall picture. Conclusion: The results of this study show that the diabetes education programme is specifically designed for each family using the internationally recommended clinical practice guidelines with its specific aims and objectives. Achieving the families' willingness to assist in the self-care of the child care is the goal of the parent education process. To achieve this, the paediatric diabetes specialist nurse and the diabetes specialist paediatrician immediately and deliberately start the process of educating the family using a programme designed to give them the necessary knowledge and skills they will need to manage their child's type 1 diabetes at home.
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