This study points to the suggestion that mental health care staff may hold negative attitudes and beliefs about people with mental illness with tentative implications for treatment of the patient and development and implementation of evidence-based services. Since patients and staff in most respects share these beliefs, it is essential to develop interventions that have an impact on both patients and staff, enabling a more recovery-oriented staff-patient relationship.

BackgroundGreater interest is being shown in participatory approaches, especially in research on interventions that concern children and young people’s health and well-being. Although participatory approaches have user involvement in common, they differ in terms of the explicit guidance on how to actually involve and engage children and young people in health research. The aim of this scoping review was to systematically map recent research involving children and young people in the development of interventions targeting issues of health and well-being.MethodsAn interpretative scoping literature review based on: a scientific literature search in (health and social science) databases, reference lists, a manual search in key journals and contact with existing networks was conducted. A total of 4458 references were identified through the literature search, of which 41 studies published between 2000 and 2017 were included in the review. The target population was children and young people under 25 years old. Level of participation was categorized according to Shier’s Pathways to Participation Model.ResultsThe review showed that participatory approaches were most often used in the development of interventions in school settings and in community and healthcare settings and on issues concerning support in lifestyle or in managing illness or disease. The level of participation varied from children and young people taking part just as active informants, through stages of greater participation both in quantitative and qualitative terms, to children and young people becoming an active agent involved as a co-researcher where the research process was shaped by views of a higher level of mutuality. Most of the studies were categorised at a medium level and only three studies were judged to involve the children and young people at the highest level.ConclusionsThis scoping review showed that work remains in enabling children and young people to influence the development of interventions targeting health and well-being. In relation to level of sustainability in the interventions, it is relevant that goals, strategies and processes are formulated by those who can gain from the interventions. Participatory approaches aiming for a higher level of participation where children and young people work together with the researchers in partnerships are thus warranted.

Service user participation in decision making is considered an essential component of recovery-oriented mental health services. Despite the potential of shared decision making to impact service users knowledge and positively influence their experience of decisional conflict, there is a lack of qualitative research on how participation in decision making is promoted from the perspective of psychiatric service users. In order to develop concrete methods that facilitate shared decision making, there is a need for increased knowledge regarding the users' own perspective. The aim of this study was to explore users' experiences of participation in decisions in mental health services in Sweden, and the kinds of support that may promote participation. Constructivist Grounded Theory (CGT) was utilized to analyse group and individual interviews with 20 users with experience of serious mental illness. The core category that emerged in the analysis described a 'struggle to be perceived as a competent and equal person' while three related categories including being the underdog, being controlled and being omitted described the difficulties of participating in decisions. The data analysis resulted in a model that describes internal and external conditions that influence the promotion of participation in decision making. The findings offer new insights from a user perspective and these can be utilized to develop and investigate concrete methods in order to promote user's participation in decisions.

BackgroundChildren 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.ObjectiveTo redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer.MethodsA 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.ResultsChildren, 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.ConclusionsOverall, 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.

BackgroundResearch has shown inconsistencies in results and difficulties in conceptualization of assessment of socioeconomic status (SES) among adolescents. The aim of this study was thus to test the validity of self-reported information on SES in two age-groups (11–13 and 14–16 years old) in an adolescent population and to evaluate its relationship to self-reported health related quality of life (HRQOL). Different measures of SES commonly used in research in relation to HRQOL were tested in this study; parent’s occupations status, family material affluence status (FAS) and perceived SES.MethodA cross-sectional study, with a sample of 948 respondents (n = 467, 11–13 years old and n = 481, 14–16 years old) completed questionnaires about SES and HRQOL. The adolescents’ completion rates were used, with chi2-test, to investigate differences between gender and age-group. Correlation was used for convergent validity and ANOVA for concurrent validity.ResultsWe found a low completion rate for both fathers’ (41.7 %) and mothers' (37.5 %) occupation status, and a difference in completion rate between gender and age-groups. FAS had the highest completion rate (100 %) compared to parent's occupations status and perceived SES. The convergent validity between the SES-indicators was weak (Spearman correlation coefficient below 0.3), suggesting that the indicators measured different dimensions of SES. Both FAS and perceived SES showed a gradient in mean HRQOL between low and high SES in relation to HRQOL, this was significant only for perceived SES (p < 0.01, both age-groups).ConclusionThis study indicates the need for considering different approaches to measures of SES among adolescences and when evaluating SES in relation to HRQOL. Further research is needed to investigate sustainable ways to measure SES, delineating the relevance of tangible measures of education, occupation and income in relation to the perceived socioeconomic status in comparison with others in immediate social networks and in society at large.

BackgroundShared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice.ObjectiveThe objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden.MethodsThree semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM.ResultsThe model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process.Conclusions and Implications for PracticeThe current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.

The most important goal of nursing care is to promote the subjective experience of health. The health promoting efforts of mental health care nurses must be aimed at creating encounters where the patient will be confirmed both existentially and as an individual worthy of dignity. The patient in mental health care is often viewed by the nurse as nothing more than a passive recipient of care and the belief in the patient's potential is minimal. This can lead to a situation where the patient loses control in the caring situation and feels unable to improve his/her health, which conflicts with the goal of the nursing care. The aim of the study was to describe patients' conceptions of how health processes are promoted in mental health nursing. Twelve patients with experience of mental health nursing were interviewed, and the data material was analysed using a phenomenographic approach. The results show 13 different conceptions of the phenomenon, and these were summarized into four descriptive categories: interaction, attention, development and dignity. The conceptions described show that the patients need to be treated as equals and that the nurse must trust the patient's ability to make decisions and to promote his/her health process. It is suggested that mental health nursing should be built on humanistic science and its view that every individual has the ability to grow and develop. This view is one of the most important preconditions for the promotion of health processes in mental health nursing.

BackgroundRecommendations for rheumatology nursing management of chronic inflammatory arthritis (CIA) from European League Against Rheumatism (EULAR) states that nurses should take part in the monitoring patients’ disease and therapy in order to achieve cost savings. The aim of the study was to compare the costs of rheumatology care between a nurse-led rheumatology clinic (NLC), based on person-centred care (PCC), versus a rheumatologist-led clinic (RLC), in monitoring of patients with CIA undergoing biological therapy.MethodsPatients with CIA undergoing biological therapy (n = 107) and a Disease Activity Score of 28 ≤ 3.2 were randomised to follow-up by either NLC or RLC. All patients met the rheumatologist at inclusion and after 12 months. In the intervention one of two annual monitoring visits in an RLC was replaced by a visit to an NLC. The primary outcome was total annual cost of rheumatology care.ResultsA total of 97 patients completed the RCT at the 12 month follow-up. Replacing one of the two annual rheumatologist monitoring visits by a nurse-led monitoring visit, resulted in no additional contacts to the rheumatology clinic, but rather a decrease in the use of resources and a reduction of costs. The total annual rheumatology care costs including fixed monitoring, variable monitoring, rehabilitation, specialist consultations, radiography, and pharmacological therapy, generated €14107.7 per patient in the NLC compared with €16274.9 in the RCL (p = 0.004), giving a €2167.2 (13 %) lower annual cost for the NLC.ConclusionsPatients with CIA and low disease activity or in remission undergoing biological therapy can be monitored with a reduced resource use and at a lower annual cost by an NLC, based on PCC with no difference in clinical outcomes. This could free resources for more intensive monitoring of patients early in the disease or patients with high disease activity.Trial registrationThe trial is registered as a clinical trial at the ClinicalTrials.gov (NCT01071447). Registration date: October 8, 2009.