Charting Health Challenges for Digital Preventive Interventions Among Adult Survivors of Childhood Acute Lymphoblastic Leukemia: National Long-Term Follow-Up Survey of Self-Rated Health Outcomes.

BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common malignancy in childhood, but the prognosis has remarkably improved over the last 50 years in high-income countries, and thus, there is a focus on long-term health outcomes following survival and how to best provide health care support to adult long-term survivors of childhood ALL to prevent and handle potential health problems. Digital health interventions are promising to deliver feasible health promotion and prevention programs. This is particularly relevant for ensuring long-term follow-up in cases where continuous contact with oncology care may be disrupted. Moreover, these interventions are beneficial in reaching geographically dispersed target groups and overcoming the time constraints of everyday life that often hinder participation in such programs. OBJECTIVE: This study aimed to fill the gaps in existing research on adult long-term survivors of childhood ALL and provide formative data that can inform the development of formalized follow-up services designed to meet the needs of these survivors in ways that align with their preferences for digital health interventions. METHODS: In this cross-sectional national study, adult survivors (aged ≥18 years) of childhood ALL for over 10 years after diagnosis were compared to their siblings in terms of mental and physical health-related factors, including sleep, stress, anxiety, and depression (Depression Anxiety and Stress Scale 21 [DASS-21]); several dimensions of fatigue (Multidimensional Fatigue Inventory 20 [MFI-20]); work ability (Work Ability Index); chronic pain; and prevalences of diabetes, cardiovascular disease, headache or migraine, and rheumatic disease. RESULTS: Overall, 426 of 855 eligible ALL survivors responded (mean age 30.9, SD 7.7 years), and they participated at an average of 24 (SD 6.9) years after ALL diagnosis. Siblings (n=135; mean age 31.5, SD 7.7 years) acted as controls. Sleep quality, sleep quantity, and mean work ability scores were significantly lower, and physical fatigue, reduced motivation, and reduced activity scores were higher in ALL survivors than in siblings. There were no significant differences between the groups in terms of BMI and prevalence of chronic pain, depression, anxiety, or stress. Physical and psychological complications were more frequent among adult ALL survivors who had received hematopoietic stem cell transplantation (HSCT) than among those who had not received HSCT. CONCLUSIONS: Our nationwide cross-sectional study addressed the scarcity of knowledge regarding the self-reported health outcomes of adult long-term survivors of childhood ALL. We highlighted significant disparities within this population and emphasized the potential of comprehensive digital interventions that target vitality, sleep quality, fatigue, and psychosocial well-being to enhance well-being and bolster the capacity for managing chronic health conditions in this target group. Such an intervention would align with the needs of this target group, which is a prerequisite for successfully incorporating technology into the daily lives of survivors of childhood ALL.

Adult survivors' perceptions of their childhood and the influences of being treated for acute lymphoblastic leukaemia with allogeneic hematopoietic stem cell transplantation as a child: A phenomenographic study.

PURPOSE: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child. METHOD: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used. RESULTS: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings' and parents' lives had been affected, but at the same time many perceived that they and their family members had become closer to one another. CONCLUSIONS: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics.

Meaning of wellness in caring science based on Rodgers's evolutionary concept analysis.

BACKGROUND: Wellness is a holistic, multidimensional, and process-oriented property on a continuum. It has been used interchangeably with and is undifferentiated from concepts such as health and well-being without an in-depth clarification of its theoretical foundations and a reflection on its meaning. The concept of wellness is frequently used, but its definition remains unclear. AIM: To conceptually and theoretically explore the concept of wellness to contribute to a deeper understanding in caring science. METHOD: Rodgers' evolutionary concept analysis was applied to the theoretical investigation of data from publications of international origins. The focus was on antecedents, attributes, consequences, surrogate and related terms, and contextual references. A literature search was performed through a manual review of reference lists and an online search in CINAHL and PubMed via EBSCO, and in ProQuest. Abstracts were examined to identify relevant studies for further review. The inclusion criteria were peer-reviewed papers in English; papers published in scientific journals using the surrogate terms 'wellness', 'health', 'health care', and 'health care and wellness'; and papers discussing and/or defining the concept of wellness. Twenty-six studies met the inclusion criteria. RESULTS: Based on the findings from this concept analysis, a definition of wellness was developed: 'a holistic and multidimensional concept represented on a continuum of being well that goes beyond health'. Implications for nursing practice were correspondingly presented. CONCLUSION: Wellness is defined as a holistic and comprehensive multidimensional concept represented on a continuum of being well, that goes beyond health. It calls attention by applying the salutogenic perspective to health promotion in caring science. It is strongly related to individual lifestyle and health behaviour and is frequently used interchangeably with health and well-being without an in-depth clarification of its theoretical foundation.

Weighted Blankets' Effect on the Health of Older People Living in Nursing Homes.

BACKGROUND: An increasingly aging population is a global phenomenon. While considered a positive step forward, vulnerability to age-related health problems increases along with the ageing population. The aim of the study was to investigate weighted blankets' effect on health regarding quality of life (QoL), sleep, nutrition, cognition, activities of daily living ADL and medication in older people living in nursing homes. METHODS: In total, 110 older people were involved in an intervention with weighted blankets, and 68 older people completed the intervention. Measures before and after were performed regarding quality of life; QoL-AD, EQ-VAS, sleep; MISS, nutrition; MNA, cognition; S -MMSE (ADL) and medication. Comparative statistical analyses were applied. RESULTS: After intervention with weighted blankets, health in general, such as QoL, improved. Sleep also improved significantly, especially with respect to waking up during the night. Nutrition was enhanced, health as a cognitive ability improved, and medication in the psychoanaleptic group decreased. The effect size varied between small and large. CONCLUSIONS: A weighted blanket seems to be an effective and safe intervention for older people in nursing homes, as several improvements were made regarding the health of older people.

Health-related quality of life in adults treated for paediatric acute lymphoblastic leukaemia: a cross-sectional and longitudinal cohort study.

INTRODUCTION: Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship. METHODS AND ANALYSIS: This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience. ETHICS AND DISSEMINATION: The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.

Nursing staff's experiences of how weighted blankets influence resident's in nursing homes expressions of health.

PURPOSE: The most common treatment for resident's health problems is pharmacological. Little research has been done on how an intervention with a non-pharmacological method, such as a weighted blanket, Through the nursing staff view, we can learn how weighted blankets influence resident's health in nursing homes. The aim of this study was to explore nursing staff's experiences of how an intervention with weighted blankets influenced resident's expressions of health. METHODS: The study had a descriptive qualitative design with semi-structured interviews with 20 nursing staff working in nursing homes, and an inductive content analysis was applied. RESULTS: The nursing staff expressed that the weighted blanket positively influenced resident's health in the areas of sleep, physical activity, and psychological behaviour. The weighted blanket made them fall asleep faster, sleep was uninterrupted andthey felt more rested in the morning. The nursing staff observed an increased level of activity as the resident became more energetic . The nursing staff also experienced reduced negative psychological behaviours like anxiety and worrying. CONCLUSION: This study indicated that the weighted blanket changed the health expression of resident in several crucial areas. Deep pressure treatment indicates an alternative health-improved treatment for resident in nursing homes.

Health related quality of life and buffering factors in adult survivors of acute pediatric lymphoblastic leukemia and their siblings.

BACKGROUND: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings. METHODS: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed. RESULTS: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy. CONCLUSION: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease.

Creating a communication space in the healthcare context: Children's perspective of using the eHealth service, Sisom.

According to the United Nation's Convention of the Rights of the Child, children have the right to participate in their own healthcare and make their opinions heard. The aim of this study was thus to explore the impact of using an eHealth service, Sisom, to gain the children's perspectives during their healthcare appointments. Data were gathered through individual interviews with a purposeful sample of 16 children, aged 6-13 years old, treated for different diseases and using the eHealth service, Sisom, during their healthcare appointments. The interviews were analysed using a constructivist grounded theory. The results showed that using Sisom made children's voice heard by creating a communication space in the healthcare setting. This meant that the children got involved in the communication, were acknowledged as an important person who could give the answers to questions and were given time. Implementing the use of Sisom is a way to make children's needs and preferences explicitly visible for decision-making in practice and thereby supporting the further development of child-centred care in practice.

Welfare technology, ethics and well-being a qualitative study about the implementation of welfare technology within areas of social services in a Swedish municipality.

Purpose: Digitalization and e-health have potential to generate good quality, equal health, well-being and to develop and strengthen individuals' resources with the goal of increased independence and participation in society. The implementation of welfare technology requires knowledge of digitalization, as well as an awareness of its meaning in terms of ethical principles and ethical analysis. The purpose of this study was to describe ethical analysis concerning the implementation of welfare technology, in terms of both strategies and tools, within areas of social services in a Swedish municipality. Method: We followed a working model that focused on increased knowledge and experience in the implementation of welfare technology from an ethical perspective. In the data collection were observations, a questionnaire with open-ended questions and focus group discussions used. Results: The analysis showed that when welfare technology was introduced and implemented within the area of social services in a municipality, ethical awareness resulting from the conflicts between various interests and values had to be addressed. Conclusions: The ethical analysis improved implementation of strategies and tools in terms of facts and values, and invisible underlying values to the concept of well-being.

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study.

BACKGROUND: For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. OBJECTIVE: The aim of this study was to investigate children's participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. METHODS: A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children's levels of participation guided by a framework based on Shier's model of participation. RESULTS: Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier's participation model: children were listened to, children were supported to express their views, and children's views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. CONCLUSIONS: This study shows that the eHealth service Sisom can increase children's participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children's health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.

Child participation in health care (ChiPaC)-Development and psychometric evaluation of a self-report instrument for children's participation in health care.

AIMS AND OBJECTIVES: To develop and evaluate the psychometric properties of a self-report instrument measuring 6- to 12-year-old children's own experiences of participation in health care. BACKGROUND: Validated measures to evaluate children's participation in health care can play a critical role in strategic work towards supporting children's participation at an individual level and in working towards quality improvements at an organisational level. There are, however, no available instruments to achieve this. METHODS: An instrument development design was used, together with the TRIPOD checklist. Item construction was based on research about children's perspectives on participation in health care and Shier's model for participation. The face and content validity was evaluated by 14 healthy children, 9 paediatric nurses and 8 children with different diseases. The construct validity, internal consistency and stability reliability were evaluated based on data from 138 children visiting a paediatric clinic. RESULTS: The testing of the face and content validity resulted in an instrument with child-friendly language, additional instructions and visual attractive presentation. The principle component analysis resulted in the four-factor solution: "To be included," "To trust professionals," "To take control," and "To understand information." Internal consistency and intraclass correlation coefficients were acceptable. CONCLUSION: We conclude that the child participation in health care (ChiPaC) instrument has adequate reliability and validity when used to evaluate children's participation in health care. The involvement of children in the development of ChiPaC resulted in a brief, colourful and user-friendly instrument for use in paediatric health care. RELEVANCE TO CLINICAL PRACTICE: This new questionnaire, ChiPaC, is adapted for children between 6-12 years measuring participation in health care from a child perspective. ChiPaC can be used in the practical work of supporting individual children's participation in health care as well as in the strategical work towards quality improvements on an organisational level.

Parents' experiences of an e-health intervention implemented in pediatric healthcare: a qualitative study.

BACKGROUND: The growing field of participation in healthcare has the potential to provide a number of benefits for children, patients, healthcare professionals and also the healthcare systems. According to the Convention on the Rights of the Child (UNCRC), children have the right to participate in their own healthcare and make their voice heard. Children's opportunities for understanding their conditions, sharing their views and participating in decisions regarding their care depend on healthcare professionals but also on parents' ability to communicate and include children. E-health solutions can remove barriers to children's communication with healthcare professionals. The aim of this study was to explore parents' perspectives on the outcomes of an e-health solution, Sisom, used by children during healthcare appointments. METHODS: The empirical data is based on interviews with 16 parents. In the present study constructivist, grounded theory was chosen as the method. RESULTS: The theory of enhancing participation, by orientating communication about healthcare towards the voice of the child instead of the parents, summarizes the process of how the outcome of Sisom for children lead to enhanced participation, by making the child the main actor and an agent in his/her own healthcare. The facilitators for achieving participation in Sisom were four interrelated outcomes; engaging, voice-guarding, raising awareness and integrity preserving. In addition to generating increased participation, it emerged that the use of Sisom also initiated a process, which was evident in all four subcategories that facilitated the child in coping with the experience of having an illness. CONCLUSIONS: We conclude, that Sisom orientated communication about healthcare towards the voice of the child instead of the parents as well as including the child in the dialogue with the healthcare professional and thus increasing the child's participation and human rights.

Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care.

BACKGROUND: Children's participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. OBJECTIVE: The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals' perspectives. METHODS: A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. RESULTS: To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children's participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals' beliefs in the usefulness and usability of the solution, and health care professionals' willingness to change their professional roles guided by the solution. CONCLUSIONS: The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children's participation.

Callers' perceptions of their contact with a rheumatology telephone helpline.

BACKGROUND: Telephone helplines are useful for improving patients' access to healthcare services and reducing the need for frequent face-to-face contact with healthcare professionals. Little is known about how people who phone a helpline perceive the encounter. OBJECTIVES: The aims of the present study were to describe the variation in how callers perceive their encounter with a rheumatology telephone helpline. METHODS: The study had a descriptive, qualitative design and used a phenomenographic approach, comprising 27 semi-structured telephone interviews with callers to Rheuma Direct, a rheumatology telephone helpline with specially trained nurses. The callers comprised 22 women and five men, aged 22-89 years (mean 54 years). RESULTS: The callers phoned Rheuma Direct when they had problems obtaining answers to questions on the internet or from healthcare professionals. Three descriptive categories emerged: constructive dialogue, specialized competence and applicability. The callers perceived that it was a constructive dialogue when they were able to discuss their concerns with someone, received emotional support, felt reassured and were satisfied with the information provided. They perceived specialized competence when the nurses were experienced and skilful, the advice provided complemented previously received information and when they had more knowledge after the call. The callers perceived that Rheuma Direct had applicability because it was easy to access and they could make different choices before, during and after the telephone call. CONCLUSIONS: Callers to a rheumatology telephone helpline perceived it as a valuable complement to other sources of information, and felt that it could provide them with the tools to manage their disease better, as well as future contacts with healthcare professionals.

What makes parents act and react? Parental views and considerations relating to 'child health' during infancy.

Lifestyle factors and behaviours are adopted very early in life and tend to persist throughout life. Considering that the parents are the primary gatekeepers for their child's health, there is a need to gain more knowledge and deeper understanding about what causes parents to act and react in order for early preventive efforts to have any effect. The aim was to explore the parental views and considerations concerning 'child health' among parents with infants 8-10 months old. The sample was strategic and 16 parents (aged 23-41) were recruited from three child health centres in Sweden. Open-ended interviews were conducted and a qualitative, manifest content analysis approach was utilized. The parents described the subject 'child health' as a large, multifaceted concept. Three categories emerged during data analysis: developing a sixth sense, being affected by perceptions and believing health and ill health as a continuum. The parents perceived food and feeding issues as one of the most worrying aspects and a significant indicator of 'child health'. In order to meet the parents on their turf, the 'healthy health message' conveyed needs to take the parental perspective into consideration rather than attempting to educate the parents from predetermined assumption, belief and values.

Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer.

BACKGROUND: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a "traditional" conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym "Si det som det er" or "Tell it how it is") is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a "voice" in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. OBJECTIVE: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. METHODS: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. RESULTS: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. CONCLUSIONS: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.

Promoting participation in healthcare situations for children with JIA: a grounded theory study.

Children's right to participate in their own healthcare has increasingly become highlighted in national and international research as well as in government regulations. Nevertheless, children's participation in healthcare is unsatisfactorily applied in praxis. There is a growing body of research regarding children's participation, but research from the children's own perspective is scarce. The aim of this study was thus to explore the experiences and preferences for participation in healthcare situations among children with juvenile idiopathic arthritis (JIA) as a foundation for creating strategies to promote their participation in pediatric healthcare. Twenty children, aged 8 to 17 years, with JIA were interviewed individually and in focus groups. In order to increase the children's opportunities to express their own experiences, different interview techniques were used, such as draw-and-tell and role play with dolls. The analysis was conducted with a constructivist grounded theory. The result explores children's perspective of influencing processes promoting their participation in healthcare situations. The core category that emerged was, "Releasing fear and uncertainty opens up for confidence and participation," and the categories related to the core category are, "surrounded by a sense of security and comfort," and "strengthened and supported to become involved." In conclusion, the knowledge gained in this study offers new insights from the perspective of children themselves, and can constitute a valuable contribution to the understanding of necessary conditions for the development of specific interventions that promote participation among children in healthcare situations.

The perspective of children on factors influencing their participation in perioperative care.

AIMS AND OBJECTIVES: To describe the experiences of participation in perioperative care of 8- to 11-year-old children. BACKGROUND: All children have the right to participate in decisions that affect them and have the right to express their views in all matters that concern them. Allowing children to be involved in their perioperative care can make a major difference in terms of their well-being by decreasing fear and anxiety and having more positive experiences. Taking the views of children into account and facilitating their participation could thus increase the quality of care. DESIGN: Descriptive qualitative design. METHODS: The study was conducted in 2013 and data were collected by narrative interviews with 10 children with experience from perioperative care in Sweden. Qualitative content analysis was chosen to describe the variations, differences and similarities in children's experiences of participation in perioperative care. RESULTS: The result showed that receiving preparatory information, lack of information regarding postoperative care and wanting to have detailed information are important factors for influencing children's participation. Interaction with healthcare professionals, in terms of being listened to, being a part of the decision-making and feeling trust, is important for children's participation in the decision-making process. Poor adaptation of the care environment to the children's needs, feeling uncomfortable while waiting and needs for distraction are examples of how the environment and the care in the operating theatre influence the children's experiences of participation. CONCLUSIONS: Efforts should be made to improve children's opportunities for participation in the context of perioperative care and further research is needed to establish international standards for information strategies and care environment that promotes children's participation in perioperative care. RELEVANCE TO CLINICAL PRACTICE: Nurse anaesthetists need to acquire knowledge and develop strategies for providing preparatory visits and information to children prior to surgery as well as reducing waiting times and creating environments with meaningful and tailored opportunities for distraction in perioperative care.

Effects of a self-care promoting problem-based learning programme in people with rheumatic diseases: a randomized controlled study.

AIM: To evaluate the effects of a self-care promoting problem-based learning programme for people with rheumatic diseases in terms of health-related quality of life, empowerment, and self-care ability. BACKGROUND: Individuals with rheumatoid arthritis express a great need for education and support in adapting to the disease, but the average qualities of studies about patient education interventions are not high. There is no evidence of long-term benefits of patient education. DESIGN: Randomized controlled trial. METHODS: A randomized controlled design was selected with test at baseline, 1-week and 6-month post-interventions after completed the 1-year programme. The tests consisted of validity and reliability tested instruments. The participants were randomly assigned in spring 2009 to either the experimental group (n = 54) or the control group (n = 148). The programme was running alongside the standard care the participants received at a rheumatology unit. Parametric and non-parametric tests were used in the analyses. RESULTS: The participants in the experimental group had statistically significant stronger empowerment after participation in the self-care promoting problem-based learning programme compared with the control group, at the 6-month post-intervention. Approximately, two-thirds of the participants in the experimental group stated that they had implemented lifestyle changes due to the programme. CONCLUSION: The self-care promoting problem-based learning programme enabled people with rheumatic diseases to improve their empowerment compared with the control group. It is important to continue to develop problem-based learning in patient education to find the very best way to use this pedagogical method in rheumatology care.

Psychometric properties of the Swedish Rheumatic Disease Empowerment Scale, SWE-RES-23.

INTRODUCTION: Empowerment is a central concept in both rheumatology and diabetes care. A Swedish empowerment instrument for patients with rheumatic diseases has not been created before now. The aim of the present study was to determine the psychometric properties of the Swedish Rheumatic Disease Empowerment Scale, SWE-RES-23, such as construct validity, internal consistency reliability, inter-item correlations and discriminant validity. METHODS: The already existing instrument, the Swedish Diabetes Empowerment Scale (SWE-DES-23), was adapted for use in patients with rheumatic diseases. The adapted instrument was called the SWE-RES-23. In 2009, 260 patients with rheumatic diseases from a rheumatology unit in Sweden completed the instrument. Construct validity was tested by using exploratory factor analysis. Internal consistency reliability was tested by the use of Cronbach's α-coefficient. In order to determine unidimensionality of the empowerment subscales, inter-item correlations were calculated. To establish discriminant validity, an item about self-perceived health from the Short Form (SF) 36 was used in addition to the SWE-RES-23. RESULTS: The exploratory factor analysis resulted in five factors (empowerment subscales) with eigenvalues >1, explaining 64.1% of the total variance: Goal achievement and overcoming barriers to goal achievement; Self-knowledge; Managing stress; Assessing dissatisfaction and readiness to change; and Support for caring. Cronbach's α values ranged from 0.59 to 0.91, and the value for the total score was 0.92. CONCLUSION: The results support the possibility of adapting the SWE-DES-23 for use in patients with rheumatic diseases. The SWE-RES-23 shows acceptable psychometric properties, in terms of construct validity and internal consistency reliability. To validate the SWE-RES-23 fully, further studies are needed, with a focus on test-retest correlations.