BackgroundJuvenile 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.MethodsFifty-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.ResultsIn 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.ConclusionsMore 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.

BackgroundThis study investigates gender differences in self-reports and between parent and child reports in Health-related Quality of Life (HRQOL), measured with disease-specific and generic instruments for chronic disease. Comparison of HRQOL results in this Juvenile Idiopathic Arthritis (JIA) sample to a European cohort of children with JIA and one of children with other health conditions are also made.MethodsFifty-three children with juvenile idiopathic arthritis (JIA), aged 8–18 years, and their parents completed the condition-specific DISABKIDS for JIA, and the DISABKIDS generic instrument for chronic conditions (DCGM-37) in a cross-sectional study. European reference data were used for comparison of child and parental reports.ResultsChild self-reports in DCGM-37 and DISABKIDS for JIA showed no gender differences. Parental and child reports of the child’s HRQOL differed only in DCGM-37; this was among girls who scored their independence (p = 0.03), physical limitation (p = 0.01), social exclusion (p = 0.03), emotions (p <0.01), and general transformed score (p <0.01) higher than did their parents. Our sample of children with JIA reported more physical limitation compared to samples of European children with JIA (p = 0.01), European children with chronic conditions (p < 0.01), and their parents (p = 0.01 and p < 0.01). The Swedish children reported more problem with understanding compared to the European JIA sample (p = 0.03). Swedish parents perceived their children’s independence significantly lower than did the European parents of JIA children (p < 0.01), as well as European parents of children with chronic conditions (p = 0.03). The Swedish parents also perceived their children to have significantly lower social inclusion (p < 0.05) and general transformed score (p = 0.04), in comparison to European parents of children with chronic conditions.ConclusionsParent–child differences in assessment of quality of life depend on the HRQOL instrument used, especially among girls. In comparison to European cohorts, our sample of children with JIA experienced more physical limitations and less understanding.

Background Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting them. Children and parents appeared to be more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters. Aim To explore how children, adolescents and young adults with Juvenile Idiopathic Arthritis (JIA) and parents of children with JIA view their participation and communication in healthcare encounters with healthcare professionals. Methods Using a qualitative study design, participatory workshops were held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman’s Qualitative Content Analysis resulting in one main theme and two subthemes. Results The theme “Feeling alienated or familiar with healthcare encounters” illuminates how children felt alienated at healthcare encounters if they found the encounters emotionally distressing. Children could withhold information regarding their health and function from both HCPs and their family and friends. The subtheme “Distancing oneself from healthcare” describe why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme “Being a normal event in life” describe how children felt more comfortable over time engaging with HCPs when they knew what would happen, and felt that HCPs gave them the necessary support they needed to participate. Conclusions Children’s participation in healthcare encounters varied depending if children felt alienated or familiar to the healthcare situations. Children distance themselves and are reluctant to engage in healthcare encounters if they find them emotionally distressing and feel disregarded. Over time, children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.

Background Many older patients experience constipation as a bothersome symptom with a negative impact on quality of life. During hospitalization, the focus is often on the reason for admission with the risk that other health problems are not prioritized. The aim of the study was to describe the prevalence of constipation and use of laxatives among older hospitalized patients and to investigate the associations with demographic factors, risk assessments and prescribed medications. Methods A descriptive retrospective cross-sectional study design was used. This study enrolled patients aged 65 years or older admitted to a geriatric department. Data from electronic health records regarding constipation, demographics, risk assessments, medical diagnoses, prescribed medications and length of stay were extracted. Constipation was assessed using ICD- 10 diagnosis, documented signs and symptoms of constipation, and prescribed laxatives. Data was analyzed using descriptive and comparative analyses, including logistic regression. Results In total, 6% of the patients had an ICD-10 diagnosis of constipation, 65% had signs and symptoms of constipation, and 60% had been prescribed laxatives. Only 5% of the patients had constipation documented according to ICD-10, signs and symptoms, and prescribed laxatives. Signs and symptoms of constipation were associated with prescribed opioids (OR = 2.254) and longer length of stay (OR = 1.063). Being prescribed laxatives was associated with longer length of stay (OR = 1.109), prescribed opioids (OR = 2.154), and older age (OR = 1.030). Conclusions The prevalence of constipation varies depending on the methods used to identify the condition. There was a discrepancy between the documentation of constipation in relation to sign and symptoms, ICD-10 diagnosis and prescribed laxatives. The documentation of constipation was not consistent for the three methods of assessment.

Background: The study explores how healthcare professionals view participation of children and adolescents with juvenile idiopathic arthritis, in healthcare encounters. Methods: This qualitative study includes focus groups of HCPs from different professions. The interviews were analysed with qualitative content analysis. Results: The theme "Creating an enabling arena" illuminates how HCPs face possibilities and challenges when enabling children to communicate and participate in clinical encounters. HCPs, parents, and the healthcare system need to adjust to the child. The sub-theme "Bringing different perspectives" describes how children and their parents cooperate and complement each other during healthcare encounters. The sub-theme "Building a safe and comfortable setting" includes how HCPs address the child's self-identified needs and make the child feel comfortable during encounters. The sub-theme "Facilitating methods in a limiting organisation" includes how HCPs' working methods and organization may help or hinder child participation during encounters. Conclusions: HCPs encourage children and adolescents to make their views known during healthcare encounters by creating an enabling arena. Collaboration and building good relationships between the child, the parents and the HCPs, before and during the healthcare encounters, can help the child express their wishes and experiences. Clinical examinations and use of technology, such as photos, films and web-bases questionnaires can be a good start for a better child communication in healthcare encounters. ä IMPLICATIONS FOR REHABILITATION Healthcare professionals in JIA teams experience that they can facilitate communication and participation with children and adolescents in healthcare encounters. When healthcare professionals enable both children, adolescents and their parents to bring their perspectives, these views complement one another and enrich information during healthcare encounters. Children and adolescents are more empowered to participate, when healthcare professionals create a good relationship with the child and their parents, and strengthen the child's knowledge, confidence and autonomy.