Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy. METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety. RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group. CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development.De två första författarna delar på förstaförfattarskapet.</p

Alpha-1-antitrypsin deficiency and periodontitis, a pilot study

The aim of this study was to investigate if periodontal parameters and elastase in gingival crevicular fluid (GCF) are different in alpha-1-antitrypsin deficient (AATD) subjects compared to subjects with normal AAT level. Thirty subjects were included, 20 of whom with severe AATD, phenotype PiZZ. Ten AATD subjects suffered from chronic obstructive pulmonary disease (COPD, group 1) and 10 were asymptomatic (group 2). Ten control subjects, phenotype PiMM, (group 3) were recruited from a public dental clinic. The examination comprised of sampling of GCF, Gingival Index (GI), Plaque Index (PII), probing pocket depth (PPD) and radiography. GCF was collected with paper strips (Periopaper (R)). Plasma AAT concentration was measured by nephelometry and AAT in GCF with ELISA. Elastase activity and protein in GCF were determined by spectrophotometry. The mean values for GI, PII, PPD and the radiological measurements did not show any statistically significant differences between the groups. AAT in plasma and GCF demonstrated very low values in groups 1 and 2 with no significant difference between these groups but a statistical difference in comparison with group 3. Elastase in GCF did not show any difference between the three groups. In conclusion, neither the periodontal parameters nor the elastase in GCF were different in AATD subjects, phenotype PiZZ, when compared to subjects with normal AAT level, phenotype PiMM, in this material

Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study

Abstract Background Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA. Methods Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child. Results In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports. Conclusions More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.</p

Health Related Quality of Life among schoolchildren aged 12-13 years in relation to food hypersensitivity phenotypes : a population-based study

Background: While Health Related Quality of Life has been investigated among children with IgE-mediated food allergy, less is known about quality of life among children with other types of hypersensitivity to food. The aim of this study was to investigate Health Related Quality of Life (HRQL) in children with and without food hypersensitivity. Further, we compared HRQL between children with different phenotypes of food hypersensitivity.   Methods: In a large population-based cohort of schoolchildren in Northern Sweden, the parents of 2,612 (96% of invited) completed a questionnaire. All 125 (5%) children who reported complete elimination of milk, egg, fish or wheat due to food hypersensitivity were invited to a clinical examination and 94 children participated. Of these, 75 children also completed a generic (KIDSCREEN -52) and a disease-specific HRQL questionnaire (FAQLQ-TF). Thereafter, these children were categorised into the different phenotypes: current food allergy, outgrown food allergy, and lactose intolerance. Additionally, 209 children with unrestricted diets answered the generic questionnaire. Results: The median score of all KIDSCREEN -52 domains were above the population norm of 50 both in children with and without food hypersensitivity. No significant differences in distribution in generic or disease-specific HRQL were found between children with or without food hypersensitivity. There were no significant differences in HRQL between children with different phenotypes of food hypersensitivity. However, children with current food allergy tended to have the lowest HRQL. Further, poor HRQL defined as ≥75th percentile for the disease specific score was significantly more common in the current food allergy phenotype in the domain Emotional impact and the total FAQLQ, compared to the other phenotypes. Conclusions:   In this population-based study, 12-13 year old children reported good HRQL regardless of having food hypersensitivity or not. However, the children with the current phenotype reported lower HRQL than the other phenotypes. Originally included in thesis in manuscript form </p

Responses after participating in Family Health Conversations in families with a family member who has suffered a stroke : A mixed methods research study

Background:It has been proposed that support for families in which a family member has suffered a stroke should involve the whole family system. Aim:The aim was to evaluate the responses of Family Health Conversation (FamHC) in families with a member under the age of 65 who has been diagnosed with stroke. Methods:In this mixed methods research study, families were included in an intervention group and in a control group. For both groups pre- and post-intervention quantitative data was collected and for the intervention group, qualitative data was collected post-intervention. Underlying theoretical propositions and the two data sets were then integrated. Results: Family health measured as “the general atmosphere of the interaction of the family” had improved in the intervention group when compared to the control group. The intervention families, moreover, described how they had become more cooperative, their communication had improved, they had become more confident with their situation and also when planning for the future when comparing to before the FamHC. Conclusions: Based on the empirical results supporting the theoretical proposition underlying FamHC, we conclude that it works as intended, and the evidence for the theoretical proposition is thereby strengthened. This paper contributes to the scientific evidence concerning FamHC. With the available evidence, RNs are suggested to consider changing practice so as to work in amore family-centred way to support families living with ill-health. Implementing FamHC can be one way of undertaking such supportive work

Children Undergoing Radiotherapy : Swedish Parents' Experiences and Suggestions for Improvement

Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multi-center study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process

It Is Tough and Tiring but It Works - Children's Experiences of Undergoing Radiotherapy

Approximately 300 children ages 0 to 18 are diagnosed with cancer in Sweden every year, and 80 to 90 of them undergo radiotherapy treatment. The aim was to describe children's experiences of preparing for and undergoing radiotherapy, and furthermore to describe children's suggestions for improvement. Thirteen children between the ages of 5 and 15 with various cancer diagnoses were interviewed. Data was analyzed using qualitative content analysis. The findings revealed five categories: positive and negative experiences with hospital stays and practical arrangements; age-appropriate information, communication, and guidance to various degrees; struggle with emotions; use of distraction and other suitable coping strategies; and children's suggestions for improvement during radiotherapy. An overarching theme emerged: "It is tough and tiring but it works". Some key areas were: explanatory visits, the need for information and communication, being afraid, discomfort and suffering, the need for media distraction, dealing with emotions, and the need for support. A systematic, family-centered preparation program could possible help families prepare and individualized distraction during radiotherapy could contribute to reducing distress. Further studies with interventions could clarify successful programs