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Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi‐dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person‐centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences. [ABSTRACT FROM AUTHOR]

Introduction: Living with a chronic condition such as type 1 diabetes (T1D) affects everyday life and support from others experiencing a similar situation can be helpful. A way to receive such support is to use an online network where people can connect and share experiences. Research has described the benefits of using such tools for connecting patients. The aim of this study was to describe the co‐design of a social network for young people with T1D and to describe their experiences when using this network. Methods: A co‐design approach was used, following three steps adapted from Sanders and Stappers (2008). In all, 36 adolescents with T1D participated. Data in the form of recordings and notes from telephone interviews, workshops and focus groups were collected and then analysed using content analysis. Numerical data from the digital platform were also used. Findings: For the interpersonal values, supporting, learning and relating to emerge, the framework of the network must be appealing and user‐friendly. The limits of time and place are eliminated, and there is a possibility for many more to join in. Conclusion: Co‐design ensures that what stakeholders think is important forms the basis for the design. The interpersonal values that are promoted are ones that only the exchange of lived knowledge and experience can generate. It is complementary to the support that healthcare professionals can offer; thus, this kind of social network is important for improved, coproduced care. Patient or Public Contribution: The participants in the present study were persons living with T1D. They were active co‐creators from the start to the end. An adult person with experience of living with T1D was involved as an advisor in the research team when drafting the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Interventions that support patients to handle the emotional and medical aspects of a long‐term health condition is important. One way is to use peer‐support groups, to help patients solving problems, increasing their knowledge and making decisions. Aim: was to investigate the impact on shared decision‐making, empowerment and coping after participation in group‐learning sessions for patients with long‐term conditions (N = 42). Design: An intervention following a health education programme based on group‐learning sessions was established. Eight different programmes were held in five different departments at a regional county hospital in Sweden. Methods: Questionnaires were analysed using paired‐sample t‐test. Results: Results showed that patients might have better opportunities to be more active during their patient encounter after attending the group learning sessions. Interventions directed to patient activation may be one key in future healthcare management, especially concerning long‐term conditions. Empowering patients is central in healthcare, and using different approaches is important. [ABSTRACT FROM AUTHOR]

Background: Takotsubo syndrome (TTS) is an acute and reversible type of heart failure that shares common features with acute coronary syndrome. It is usually caused by psychological or physical stress, but for a third, triggers cannot be identified. Patients also suffer from residual symptoms and decreased mental health in the recovery phase and may struggle to comprehend and manage everyday living. Aim: To describe patients' experiences when afflicted by takotsubo syndrome, after discharge from hospital. Method: An inductive explorative design using a qualitative approach with semi‐structured individual interviews. The text was analysed using qualitative content analysis according to Graneheim and Lundman. Result: Ten women and one man afflicted by TTS were interviewed two to twelve months after discharge. Six sub‐categories were identified, and a main category emerged: The process from symptom onset and understanding to increased awareness and changes in life. The patients suffered from emotional reactions and they sought answers and understanding about the underlying causes. The disease led to changes in patients' daily lives as they were affected physically and psychologically. Spouses and/or bystanders had a positive supporting role, but the patients desired more support from the healthcare professionals such as an earlier appointment for follow‐up with a nurse. Conclusion: Being afflicted by TTS can lead to changes in life conditions but these changes vary among patients. Becoming ill was associated to acute physical stress and prolonged psychological stress and they suffered from emotional reactions. The follow‐up care needs to improve as the patients need more guidance from healthcare professionals and earlier appointment for follow‐up with a nurse. A structured and multiprofessional treatment with a person‐centred approach could support patients in their recovery. [ABSTRACT FROM AUTHOR]

Background/Objectives: Government guidance promote benchmarking comparing quality of care including both clinical values and patient reported outcome measures in young persons with type 1 diabetes. The aim was to test if the Nordic DISABKIDS health‐related quality of life (HrQoL) modules were construct valid and measurement comparable within the three Nordic countries. Methods: Data from three DISABKIDS validation studies in Sweden, Denmark, and Norway were compared using Rasch and the graphical log‐linear Rasch modeling. Monte Carlo methods were used to estimate reliability coefficient and target was defined as the point with the lowest SE of the mean. Self‐report data were available from 99 Danish (8‐18 years), 103 Norwegian (7‐19 years), and 131 Swedish (8‐18 years) young people. Results: For the DISABKIDS higher scores on most subscales were noted in the Norwegian population. The Swedish sample had a significantly higher score on the "Diabetes treatment" subscale and scores closer to optimal target than the other countries. For each country, construct validity and sensitivity were acceptable when accounting for differential item function (DIF) and local dependency (LD). Less LD and DIF were found if only Denmark and Norway were included. The combined model was reliable; however, some differences were noted in the scale translations relating to the stem and response alternatives, which could explain the discrepancies. Conclusion: The Nordic versions of the DISABKIDS questionnaires measures valid and reliable HrQoL both within and between countries when adjusted for DIF and LD. Adjusting the Likert scales to the same respond categories may improve comparability. [ABSTRACT FROM AUTHOR]

Aims and objectives: To evaluate patient‐reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency. Background: Decreased levels of circulating antibodies (humoral immunodeficiency) are often associated with higher infection rates which cause problems in daily living, for example, symptoms of severe and recurrent bacterial infections that may cause chronic lung diseases. For some diagnoses, treatment with immunoglobulin becomes critical and lifelong. The acceptability of administration forms is important to achieve adherence to treatment and to increase quality of life for these patients. Design: Convergent mixed‐method approach. Methods: A structured telephone interview with nine questions evaluated on a score scale about treatment experience, satisfaction and ancillary supplies was used, followed by open‐ended questions for each item. Results: Prohibiting factors were revealed, exemplified by problems due to technical issues and ancillary supply issues. Promoting factors were shown by high a satisfaction according to the score‐scale when combining treatment with daily life as well as increased well‐being. Facilitated subcutaneous immunoglobulin treatment led to fewer treatment sessions, with a time‐saving aspect also described by high scores in the item concerning longer treatment interval. Conclusions: The opportunity to be given the best possible treatment plan adjusted for each patient's situation is central. Healthcare professionals should discuss the different aspects that can promote and inhibit the outcomes of treatment. Relevance to clinical practice: The results can help professionals to understand different factors that may impinge on the patients' everyday life when they are forced into a lifelong treatment regimen. This knowledge is also important for nurses who have a responsibility to promote health concerning patients with long‐term conditions in general. [ABSTRACT FROM AUTHOR]

Background: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time. Methods: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined. Results: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective. Conclusion: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery. [ABSTRACT FROM AUTHOR]

Measuring the health-related quality of life (HRQOL) is one way to understand an individual’s perspective on health, and, more specifically, how type 1 diabetes (T1D) affects a child’s everyday life. Early detection of poor HRQOL is considered a crucial factor for identifying children who are at risk of psychosocial problems. The aim of this study was to describe the differences in the HRQOL of children with T1D according to age, gender, and metabolic control (HbA1c). Cross-sectional data were collected from children with T1D using the DISABKIDS Chronic Generic Measure-37 (DCGM-37) and the diabetes specific module (DM-10). Non-parametric tests were used to investigate differences. There were differences between girls and boys, and girls reported lower HRQOL than boys (HRQOL total score: mean 74 and 67 respectively; p = .005). Adolescents described more worries and fears about the future compared with younger children. Children with poor metabolic control reported a lower HRQOL than those with better metabolic control (HRQOL total score:mean 68 and 76 respectively; p = .006), but the social dimensions were not affected. The findings of the present study elucidate the importance for paediatric nurses to explore potential problems in children with T1D and use this knowledge in clinical practice. Assessment of the HRQOL can provide the patient’s perspective on the quality of diabetes care. The HRQOL is correlated with HbA1c, gender, and age, and the HRQOL as well as HbA1c levels should be regularly assessed to establish a comprehensive care for children with T1D. [ABSTRACT FROM PUBLISHER]

The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children’s self-reporting and parents’ proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children’s HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry. [ABSTRACT FROM PUBLISHER]

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs. [ABSTRACT FROM AUTHOR]

The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children's self-reporting and parents' proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children's HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry., (© The Author(s) 2013.)