How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals' views.

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.IMPLICATIONS FOR REHABILITATIONHealthcare 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.

Older adults as designers of behavior change strategies to increase physical activity-Report of a participatory design process.

Background: Despite the significant value of physical activity for the health of older adults, this population often fails to achieve recommended activity levels. Digital interventions show promise in providing support for self-managed physical activity. However, more information is needed about older adults' preferences for digital support to change physical activity behaviors as well as the process of designing them. The aim of this paper was to describe the participatory design process in which older adults were involved in the co-creation of digitally supported behavioral change strategies to support self-managed physical activity, and how the results were integrated in a prototype. Methods: The participatory design process involved with nine older adults and two researchers. The participants were divided in two groups, and each group participated in three workshops and completed home tasks in between workshops. Following an iterative design process influenced by theories of behavior change, the workshops and home tasks were continuously analyzed, and the content and process were developed between groups and the next set of workshops. Prototypes of a mobile health (mHealth) solution for fall preventive exercise for older adults were developed in which the conceptualized strategies were integrated. To support coherence in reporting and evaluation, the developed techniques were mapped to the Behavior Change Technique Taxonomy v1 and the basic human psychosocial needs according to the Self-determination Theory. Results: The results highlight different preferences of older adults for feedback on physical activity performance, as well as the importance of transparency regarding the identification of the sender of feedback. Preferences for content and wording of feedback varied greatly. Subsequently, the design process resulted in a virtual health coach with three different motivational profiles and tools for goal setting and self-monitoring. These behavior change strategies were integrated in the exercise application Safe Step v1. The conformity of the design concepts with the needs of Self-determination Theory and Behavior Change Technique Taxonomy v1 are presented. Conclusion: The participatory design process exemplifies how older adults successfully contributed to the design of theory-based digital behavior change support, from idea to finished solution. Tailoring feedback with a transparent sender is important to support and not undermine motivation.

Older Adults' Experiences of Behavior Change Support in a Digital Fall Prevention Exercise Program: Qualitative Study Framed by the Self-determination Theory.

BACKGROUND: Exercise is an effective intervention to prevent falls in older adults; however, long-term adherence is often poor. To increase adherence, additional support for behavior change has been advocated. However, consistency in the reporting of interventions using behavior change techniques is lacking. Recently, a classification system has been developed to increase consistency in studies using behavior change techniques within the self-determination theory. OBJECTIVE: This study aimed to explore expressions of self-determination among community-dwelling older adults using a self-managed digital fall prevention exercise program comprising behavior change support (the Safe Step program), which was developed in co-creation with intended users. METHODS: The qualitative study design was based on open-ended responses to questionnaires, and individual and focus group interviews. A deductive qualitative content analysis was applied using the classification system of motivation and behavior change techniques as an analytical matrix, followed by an inductive analysis. Twenty-five participants took part in a feasibility study and exercised in their homes with the Safe Step program for 4 months. The exercise program was available on computers, smartphones, and tablets, and was fully self-managed. RESULTS: In the deductive analysis, expressions of support were demonstrated for all three basic human psychological needs, namely, autonomy, competence, and relatedness. These expressions were related to 11 of the 21 motivation and behavior change techniques in the classification system. The inductive analysis indicated that autonomy (to be in control) was valued and enabled individual adaptations according to different rationales for realizing exercise goals. However, the experience of autonomy was also two-sided and depended on the participants' competence in exercise and the use of technology. The clarity of the program and exercise videos was seen as key for support in performance and competent choices. Although augmented techniques for social support were requested, support through relatedness was found within the program. CONCLUSIONS: In this study, the Safe Step program supported the establishment of new exercise routines, as well as the three basic human psychological needs, with autonomy and competence being expressed as central in this context. Based on the participants' experiences, a proposed addition to the classification system used as an analytical matrix has been presented. TRIAL REGISTRATION: ClinicalTrials.gov NCT02916849; https://clinicaltrials.gov/ct2/show/NCT02916849.

Older adults' preferences for, adherence to and experiences of two self-management falls prevention home exercise programmes: a comparison between a digital programme and a paper booklet.

BACKGROUND: Fall prevention exercise programmes are known to be effective, but access to these programmes is not always possible. The use of eHealth solutions might be a way forward to increase access and reach a wider population. In this feasibility study the aim was to explore the choice of programme, adherence, and self-reported experiences comparing two exercise programmes - a digital programme and a paper booklet. METHODS: A participant preference trial of two self-managed fall prevention exercise interventions. Community-dwelling adults aged 70 years and older exercised independently for four months after one introduction meeting. Baseline information was collected at study start, including a short introduction of the exercise programme, a short physical assessment, and completion of questionnaires. During the four months intervention period, participants self-reported their performed exercises in an exercise diary. At a final meeting, questionnaires about their experiences, and post-assessments, were completed. For adherence analyses data from diaries were used and four subgroups for different levels of participation were compared. Exercise maintenance was followed up with a survey 12 months after study start. RESULTS: Sixty-seven participants, with mean age 77 ± 4 years were included, 72% were women. Forty-three percent chose the digital programme. Attrition rate was 17% in the digital programme group and 37% in the paper booklet group (p = .078). In both groups 50-59% reported exercise at least 75% of the intervention period. The only significant difference for adherence was in the subgroup that completed ≥75% of exercise duration, the digital programme users exercised more minutes per week (p = .001). Participants in both groups were content with their programme but digital programme users reported a significantly higher (p = .026) degree of being content, and feeling supported by the programme (p = .044). At 12 months follow-up 67% of participants using the digital programme continued to exercise regularly compared with 35% for the paper booklet (p = .036). CONCLUSIONS: Exercise interventions based on either a digital programme or a paper booklet can be used as a self-managed, independent fall prevention programme. There is a similar adherence in both programmes during a 4-month intervention, but the digital programme seems to facilitate long-term maintenance in regular exercise. TRIAL REGISTRATION: ClinTrial: NCT02916849.

'Managing pieces of a personal puzzle' - Older people's experiences of self-management falls prevention exercise guided by a digital program or a booklet.

BACKGROUND: Exercise is effective in order to prevent falls in community-dwelling older people. Self-management programs have the potential to increase access and reduce costs related to exercise-based fall prevention. However, information regarding older people's views of participating in such programs is needed to support implementation. The aim of this study was to explore older people's experiences of a self-management fall prevention exercise routine guided either by a digital program (web-based or mobile) or a paper booklet. METHODS: This qualitative study was part of a feasibility study exploring two completely self-managed exercise interventions in which the participants tailored their own program, guided either by a digital program or a paper booklet. Individual face-to-face semi-structured interviews were conducted with a purposeful sample of 28 participants (18 women), mean age 76 yrs. Qualitative content analysis was used to analyse the data. RESULTS: Self-managing and self-tailoring these exercise programs was experienced as 'Managing pieces of a personal puzzle'. To independently being able to create a program and manage exercise was described in the categories 'Finding my own level' and 'Programming it into my life'. The participants experienced the flexibility and independence provided by completely self-managed exercise as positive and constructive although it required discipline. Furthermore, different needs and preferences when managing their exercise were described, as well as varying sources of motivation for doing the exercise, as highlighted in the category 'Defining my source of motivation'. The category 'Evolving my acquired knowledge' captures the participants' views of building their competence and strategies for maintenance of the exercise. It describes a combined process of learning the program and developing reflection, which was more clearly articulated by participants using the digital program. CONCLUSIONS: This study provides new knowledge regarding experiences, preferences and motivations of older people to engage in home-based self-managed fall prevention exercise. They expressed both a capability and willingness to independently manage their exercise. A digital program seems to have strengthened the feeling of support while creating their own exercise program and tailoring it to their preferences and circumstances, which might therefore create better opportunities for adoption and adherence in the long term.

A Method for Co-Designing Theory-Based Behaviour Change Systems for Health Promotion.

A methodology was defined and developed for designing theory-based behaviour change systems for health promotion that can be tailored to the individual. Theories from two research fields were combined with a participatory action research methodology. Two case studies applying the methodology were conducted. During and between group sessions the participants created material and designs following the behaviour change strategy themes, which were discussed, analysed and transformed into a design of a behaviour change system. Theories in behavioural change and persuasive technology guided the data collection, data analyses, and the design of a behaviour change system. The methodology has strong emphasis on the target group's participation in the design process. The different aspects brought forward related to behaviour change strategies defined in literature on persuasive technology, and the dynamics of these are associated to needs and motivation defined in literature on behaviour change. It was concluded that the methodology aids the integration of theories into a participatory action research design process, and aids the analyses and motivations of design choices.

Evaluation of user adoption during three module deployments of region-wide electronic patient record systems.

BACKGROUND: In Sweden there are modular region-wide EPR systems that are implemented at various health organisations in the region. The market is dominated by four IT systems that have been procured and deployed in 18 out of 21 regions. METHODS: In a 2.5-year research study, deployments of three region-wide EPR modules: a patient administration system, eReferral module and eMedication module were followed and evaluated. Health professionals, EPR maintenance organisation, IT and health care managers were observed, interviewed and responded to questionnaires. RESULTS: Although the same deployment process was used during the three deployments, large variations in the units' adoptions were observed. The variations were due to: (1) expectation and attitude, (2) management and steering, (3) end-user involvement, (4) EPR learning, and (5) usability and the possibility of changing and improving the EPR. CONCLUSIONS: If changes in work processes are not considered in development and deployment, the potential benefits will not be achieved. It is therefore crucial that EPR deployment is conceived as organisational development. Users must be supported not just before and during the go-live phase, but also in the post-period. A problem often encountered is that it is difficult to make late changes in a region-wide EPR, and it is an open question whether it is possible to talk about a successful deployment if the usability of the introduced system is low.

Three key concerns for a successful EPR deployment and usage.

The health care environment is unique because of the large and complex organisation with a traditional hierarchic structure that is governed by laws and regulations. This paper examines how a large Swedish health care organisation work with usability issues regarding Electronic Patient Record (EPR) deployment and usage. EPR systems have great impact on work environment and clinical work routines will not be performed in the same way as before. This paper analyse how the EPR management and core business understand their EPR responsibilities and work with usability aspects at different levels in the organisations. The paper reveals that there is a conflict about responsibility between EPR management and core business management. The reasons for the confusion are contradictive understanding of what an EPR system is, an IT system or a tool for the core business to perform better health care work. This leads to that care staff's experience regarding the EPR system's usability, is not being listened to within the organisation. Three key concerns for a successful EPR deployment and usage are identified and further analysed; education, evaluation and support & improvement ideas.