Adjusting advance care planning to older people's needs: results from focus groups and interviews.

BACKGROUND: Advance care planning (ACP) is becoming increasingly important in medical care. Some suggest standardized approaches to initiate ACP with all older adults. However, the idea of patient-centered care suggests more nuanced approaches tailored to individual older adults' needs. This study investigated how older adults with different views and needs about ACP can be approached in an adequate and most beneficial way by health care professionals. METHODS: We used questionnaires, interviews, focus groups and informal conversations with older adults, living in their own homes, who volunteered to take part in our research. The research was participatory as we collaborated closely with practice partners and we used the obtained findings immediately and continuously to inform the next steps of our research throughout the process. RESULTS: We identified three subgroups of older adults with differential needs regarding ACP-related activities: The first group avoids talking about their needs and wishes for care towards the end of life. These older people benefit from activities, which aim at motivating them to concern themselves with ACP-related topics. The second group consists of older adults who are in principle open for ACP-conversations but do not initiate these themselves. This group either trusts their next-of-kin or their healthcare professional to act in accordance with their wishes or does not bring up the topic in order to avoid confronting relevant others with possibly unpleasant topics. This group of people benefits from information about ACP and from healthcare professionals initiating the ACP process. The third group of older people initiates the ACP process themselves, gathers information, and takes the necessary steps for ACP. With this group it remains relevant to check carefully whether they have indeed taken all relevant steps and shared the information with all relevant involved care institutions and relatives. CONCLUSIONS: We propose a model to simplify adjustments of ACP to individuals' needs. Our suggested approach might contribute to increasing the motivation of older people to engage in ACP conversations if these are more closely related to their own needs. Further, it might also contribute to simplifying the individual shaping of the ACP process for healthcare professionals as our suggested model offers clear guidance for approaching different types of older people in different ways. The suggested approach may in future be used for training health care professionals in the conduct of ACP conversations.

Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland.

BACKGROUND: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. OBJECTIVE: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland. METHOD: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. RESULTS: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. CONCLUSIONS: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.

The Balancing Act of Assessment Validity in Interprofessional Healthcare Education: A Qualitative Evaluation Study.

CONSTRUCT & BACKGROUND: In order to determine students' level of interprofessional competencies, there is a need for well-considered and thoroughly designed interprofessional assessments. Current literature about interprofessional assessments focuses largely on the development and validation of assessment instruments such as self-assessments or questionnaires to assess students' knowledge or attitudes. Less is known about the design and validity of integral types of assessment in interprofessional education, such as case-based assessments, or performance assessments. The aim of this study is to evaluate the evidence for and threats to the validity of the decisions about students' interprofessional performances based on such integral assessment task. We investigated whether the assessment prototype is a precursor to practice (authenticity) and whether the assessment provides valid information to determine the level of interprofessional competence (scoring). APPROACH: We used a design-based qualitative research design in which we conducted three group interviews with teachers, students, and interprofessional assessment experts. In semi-structured group interviews, participants evaluated the evidence for and threats to the validity of an interprofessional assessment task, which were analyzed using deductive and inductive content analysis. FINDINGS: Although both evidence for and threats to validity were mentioned, the threats refuting the assessment's validity prevailed. Evidence for the authenticity aspect was that the assessment task, conducting a team meeting, is common in practice. However, its validity was questioned because the assessment task appeared more structured as compared to practice. The most frequently mentioned threat to the scoring aspect was that the process of interprofessional collaboration between the students could not be evaluated sufficiently by means of this assessment task. CONCLUSIONS: This study showed that establishing interprofessional assessment validity requires three major balancing acts. The first is the balance between authenticity and complexity. As interprofessional practice and competencies are complex, interprofessional tasks require build-up or guidance toward this complexity and chaotic practice. The second is that between authenticity and scoring, in which optimal authenticity might lead to threats to scoring and vice versa. Simultaneous optimal authenticity and scoring seems impossible, requiring ongoing evaluation and monitoring of interprofessional assessment validity to ensure authentic yet fair assessments for all participating professions. The third balancing act is between team scoring and individual scoring. As interprofessional practice requires collaboration and synthesis of diverse professions, the team process is at the heart of solving interprofessional tasks. However, to stimulate individual accountability, the individual performance should not be neglected.

Series: Practical guidance to qualitative research. Part 7: Qualitative evidence synthesis for emerging themes in primary care research: Scoping review, meta-ethnography and rapid realist review.

This article, the seventh in a series aiming to provide practical guidance for qualitative research in primary care, introduces qualitative synthesis research for addressing health themes in primary care research. Qualitative synthesis combines rigorous processes and authorial judgement to present the collective meaning of research outputs; the findings of qualitative studies - and sometimes mixed-methods and quantitative research - are pooled. We describe three exemplary designs: the scoping review, the meta-ethnography and the rapid realist review. Scoping reviews aim to provide an overview of the evidence/knowledge or to answer questions regarding the nature and diversity of the evidence/knowledge available. Meta-ethnographies intend to systematically compare data from primary qualitative studies to identify and develop new overarching concepts, theories, and models. Rapid realist reviews aim to provide a knowledge synthesis by looking at complex questions while responding to time-sensitive and emerging issues. It addresses the question, 'what works, for whom, in what circumstances, and how?'We discuss these three designs' context, what, why, when and how. We provide examples of published studies and sources for further reading, including manuals and guidelines for conducting and reporting these studies. Finally, we discuss attention points for the research team concerning the involvement of necessary experts and stakeholders and choices to be made during the research process.

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research.

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.

Rationale and development of an e-health application to deliver patient-centered care during treatment for recently diagnosed multiple myeloma patients: pilot study of the MM E-coach.

BACKGROUND: Patients with multiple myeloma (MM) increasingly face complicated treatment regimens. E-health may support patients and healthcare providers in enhancing a patient-centered healthcare approach. Therefore, we aimed to develop a patient-centered multi-modality e-health application, to assess the application for usability and end-user experiences. METHODS: The application was developed following an iterative "action-based" methodology using the design thinking approach. Key end users participated, and relevant stakeholders were consulted in the development process. First, the care pathway was evaluated, the focus of development was determined, and a solution ideated during recurring multidisciplinary meetings. Second, a prototype was tested and improved. Third, a subsequent prototype was evaluated during a pilot study with patients and healthcare professionals on usability, usage, and experiences. RESULTS: The multi-modality application, named the "MM E-coach," consisted of a newly developed medication module, patient-reported outcome (PRO) questionnaire assessments, a messaging service, alerts, information provision, and a personal care plan. The median system usability score was 60 on a scale of 0-100. Patients appreciated the medication overview, healthcare professionals appreciated the outpatient clinic preparation module, and both appreciated the messaging service. Additional recommendations for improvement mostly revolved around the flexibility of functionalities and look and feel of the application. CONCLUSIONS: The MM E-coach has the potential to provide patient-centered care by supporting patients and caregivers during MM treatment and is a promising application to be implemented in the MM care pathway. A randomized clinical trial was initiated to study its clinical effectiveness.

Implementation of a patient-reported experience measure in a Dutch disability care organization: A process evaluation of cocreated tailored strategies.

INTRODUCTION: In 24/7 disability care facilities, patient-reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. METHODS: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick-offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. RESULTS: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID-19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. CONCLUSION: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility-specific learning goals. Stakeholder engagement and co-created strategies may have strengthened the adoption of and experiences with the implementation. PATIENT OR PUBLIC CONTRIBUTION: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact.

Parents' Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder-A Descriptive Population-Based Study from Switzerland.

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD.

Design guidelines for assessing students' interprofessional competencies in healthcare education: a consensus study.

INTRODUCTION: Healthcare systems require healthcare professionals and students educated in an interprofessional (IP) context. Well-designed assessments are needed to evaluate whether students have developed IP competencies, but we currently lack evidence-informed guidelines to create them. This study aims to provide guidelines for the assessment of IP competencies in healthcare education. METHODS: A qualitative consensus study was conducted to establish guidelines for the design of IP assessments using the nominal group technique. First, five expert groups (IP experts, patients, educational scientists, teachers, and students) were asked to discuss design guidelines for IP assessment and reach intra-group consensus. Second, one heterogeneous inter-group meeting was organized to reach a consensus among the expert groups on IP assessment guidelines. RESULTS: This study yielded a comprehensive set of 26 guidelines to help design performance assessments for IP education: ten guidelines for both the IP assessment tasks and the IP assessors and six guidelines for the IP assessment procedures. DISCUSSION: The results showed that IP assessment is complex and, compared to mono-professional assessment, high-quality IP assessments require additional elements such as multiple IP products and processes to be assessed, an IP pool of assessors, and assessment procedures in which standards are included for the IP collaboration process as well as individual contributions. The guidelines are based on expert knowledge and experience, but an important next step is to test these design guidelines in educational practice.

Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers.

A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: (1) Informal caregivers' roles in interprofessional collaboration with healthcare professionals and (2) Informal caregivers' perception of interprofessional collaboration among healthcare professionals. Informal caregivers' roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers' collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.

Series: Practical guidance to qualitative research. Part 6: Longitudinal qualitative and mixed-methods approaches for longitudinal and complex health themes in primary care research.

This article, the sixth in a series aiming to provide practical guidance for qualitative research in primary care, introduces two approaches for addressing longitudinal and complex health themes in primary care research. The first approach - longitudinal qualitative research - supports the study of change during the life course. The second approach - mixed-methods research - integrates quantitative and qualitative research to gain new insights to address the complex and multifaceted themes in primary care.We discuss the context, what, why, when and how of these approaches and their main practical and methodological challenges. We provide examples of empirical studies using these approaches and sources for further reading.

Series: Practical guidance to qualitative research. Part 5: Co-creative qualitative approaches for emerging themes in primary care research: Experience-based co-design, user-centred design and community-based participatory research.

This article, the fifth in a series aiming to provide practical guidance for qualitative research in primary care, introduces three qualitative approaches with co-creative characteristics for addressing emerging themes in primary care research: experience-based co-design, user-centred design and community-based participatory research. Co-creation aims to define the (research) problem, develop and implement interventions and evaluate and define (research and practice) outcomes in partnership with patients, family carers, researchers, care professionals and other relevant stakeholders. Experience-based co-design seeks to understand how people experience a health care process or service. User-centred design is an approach to assess, design and develop technological and organisational systems, for example, eHealth, involving end-users in the design and decision-making processes. Community-based participatory research is a collaborative approach addressing a locally relevant health issue. It is often directed at hard-to-reach and vulnerable people. We address the context, what, why, when and how of these co-creative approaches, and their main practical and methodological challenges. We provide examples of empirical studies using these approaches and sources for further reading.

Clients and professionals elicit long-term care preferences by using 'What matters to me': A process evaluation in the Netherlands.

BACKGROUND: 'What matters to me' is a five-category preference elicitation tool to assist clients and professionals in choosing long-term care. This study aimed to evaluate the use of and experiences with this tool. METHODS: A mixed-method process evaluation was applied. Participants were 71 clients or relatives, and 12 professionals. They were all involved in decision-making on long-term care. Data collection comprised online user activity logs (N = 71), questionnaires (N = 38) and interviews (N = 20). Descriptive statistics was used for quantitative data, and a thematic analysis for qualitative data. RESULTS: Sixty-nine per cent of participants completed one or more categories in an average time of 6.9 (±0.03) minutes. The tool was rated 6.63 (±0.88) of 7 in the Post-Study System Usability Questionnaire (PSSUQ). Ninety-five per cent experienced the tool as useful in practice. Suggestions for improvement included a separate version for relatives and a non-digital version. Although professionals thought the potentially extended consultation time could be problematic, all participants would recommend the tool to others. CONCLUSION: 'What matters to me' seems useful to assist clients and professionals with preference elicitation in long-term care. Evaluation of the impact on consultations between clients and professionals by using 'What matters to me' is needed.

How to foster successful implementation of a patient reported experience measurement in the disability sector: an example of developing strategies in co-creation.

BACKGROUND: The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved in this process. Currently, the impact of stakeholders on strategies to improve the integrated use is rarely reported, and information about how stakeholders can be engaged, including care-users who are communication vulnerable, is limited. This study illustrates the impact of all stakeholders on developing tailored implementation strategies and provides insights into supportive conditions to involve care-users who are communication vulnerable. METHODS: With the use of participatory action research, implementation strategies were co-created by care-users who are communication vulnerable (n = 8), professionals (n = 12), management (n = 6) and researchers (n = 5) over 9 months. Data collection consisted of audiotapes, reports, and researchers' notes. Conventional content analysis was performed. RESULTS: The impact of care-users concerned the strategies' look and feel, understandability and relevance. Professionals influenced impact on how to use strategies and terminology. The impact of management was on showing the gap between policy and practice, and learning from previous improvement failures. Researchers showed impact on analysis, direction of strategy changes and translating academic and development experience into practice. The engagement of care-users who are communication vulnerable was supported, taking into account organisational issues and the presentation of information. CONCLUSIONS: The impact of all engaged stakeholders was identified over the different levels strategies focused on. Care-users who are communication vulnerable were valuable engaged in co-creation implementation strategies by equipping them to their needs and routines, which requires adaptation in communication, delimited meetings and a safe group environment. TRIAL REGISTRATION: Reviewed by the Medical Ethics Committee of Zuyderland-Zuyd (METCZ20190006). NL7594 registred at https://www.trialregister.nl/ .

Exploring care-users experiences is important for decisions to improve quality of care. This applies to care-users in the disability care in particular, as these care-users are highly dependent on their care professional. Instruments that facilitate a dialogue between care-users and care professionals about experiences with care are not always used correctly. Furthermore, it is difficult to translate outcomes into decisions about improving quality of care for the individual care-user and the organisation. In our study, care-users, care professionals, management and researchers developed strategies together to improve the use of care-user experience measures.This study aims to show the impact of all participants, including care-users, professionals, management and researchers, on developing implementation strategies. Additionally, the study aims to show how care-users can participate in developing strategies whilst having problems with communication due to intellectual, developmental and acquired disabilities.We found that care-users gave crucial input to the look and feel, and understandability and relevance of the strategies. The contribution of the professionals had impact on how to use strategies and terminology used in instructions and visuals. Management shared lessons learned and represented the needs on the policy level. Researchers used their analytical skills and facilitated the group process. Care-users were able to collaborate by taking into account their needs and because information was presented to them clearly and attractively.

The Next Step Toward Patient-Centeredness in Multidisciplinary Cancer Team Meetings: An Interview Study with Professionals.

BACKGROUND: Patient-centeredness is essential in complex oncological multidisciplinary team decision-making. Improvement seems to be needed, while there is a lack of knowledge about health care providers' needs for improvement. OBJECTIVE: To explore multidisciplinary team members' perspectives on the need to improve patient-centeredness in complex decision-making, and subsequently the strategies to enhance it. METHODS: This was a qualitative descriptive interview study. The participants were twenty-four professionals who attended multidisciplinary cancer team meetings weekly. The setting was five multidisciplinary teams (gastrointestinal, gynecological, urological, head and neck, and hematological cancer) in a Dutch academic hospital. Data were collected by semi-structured interviews and were analyzed with a combination of inductive and deductive content analysis. RESULTS: The participants voiced the need for additional information (patient-centered information, patients's needs and preferences, individualized medical information) during the multidisciplinary team meeting, to be more patient-centered in the decision-making conversation with the patient following the meeting, and for more information following the meeting to support patient-centeredness. The strategies, which mostly originated from the needs, were categorized as organization, decision-making, and communication. The most prominent strategies were those aimed at collecting and using patient-centered information, and to facilitate the decision-making conversation with the patient following the multidisciplinary team meeting. CONCLUSION: Our findings highlighted the need to improve patient-centeredness in oncological multidisciplinary teams and provided a comprehensive overview of strategies for improvement, supported by multidisciplinary team members. These strategies emphasize involvement of patients throughout the continuous process of decision-making for patients with cancer. These strategies may be implemented in other oncological multidisciplinary teams, taking in mind the local needs. Future research may help to prioritize the strategies and to determine and evaluate the effect on endpoints, like patient or professional satisfaction, shared decision-making, and on the decision that was made.

Improving the experience of older people with colorectal and breast cancer in patient-centred cancer care pathways using experience-based co-design.

BACKGROUND: Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare. OBJECTIVES: Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group. DESIGN: Experience-Based Co-Design. SETTING AND PARTICIPANTS: Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways. INTERVENTIONS: Co-design quality improvement teams. MAIN OUTCOME MEASURES: Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient-professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position. CONCLUSION: This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients. PATIENT OR PUBLIC CONTRIBUTION: Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.

Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study.

BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12-18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long-lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship- and task-oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich.

AIM: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. METHOD: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15-21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. RESULT: The presence of two main themes seemed necessary to facilitate participation outside of home and school: "environmental prerequisites to attend activities", which consists of five subthemes, such as "the company of trusted persons" and "the provision of knowledge and information", and "social interchange and engagement", which consists of three subthemes and describes how actual involvement can be supported. CONCLUSION: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.IMPLICATIONS FOR REHABILITATIONAdolescents with autism spectrum disorder perceive every kind of participation outside of home and school as social.We recommend using the company of trusted persons to encourage adolescents with autism spectrum disorder to actively participate outside of home and school.Rehabilitation professionals should promote environment-based approaches to achieve participation of adolescents with autism spectrum disorder.Rehabilitation professionals should actively approach, acknowledge and gently guide adolescents with autism spectrum disorder to support engagement in participation.

Stories of Lymphoma Survivors in Early Aftercare: A Narrative Inquiry.

BACKGROUND: Survivors of lymphoma experience multiple challenges after treatment. However, a lack of knowledge of in-depth experiences of lymphoma survivors in early aftercare persists. OBJECTIVE: To gain an in-depth understanding of the experiences of lymphoma survivors in early aftercare who have received an aftercare consultation based on evidence-based guideline recommendations, with an advanced practice nurse. METHODS: This study used a narrative design. We recruited lymphoma survivors after a best-practice aftercare consultation with an advanced practice nurse. A total of 22 lymphoma survivors and 9 partners participated. Data were collected through narrative interviews and analyzed according to thematic narrative analysis. RESULTS: Six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty, deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from healthcare professionals. CONCLUSIONS: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with a range of challenges in their personal lives. Choosing an aftercare trajectory based on an aftercare consultation that encourages patients to think about their issues, goals, and possible aftercare options may be useful for their transition from treatment to survivorship. IMPLICATIONS FOR PRACTICE: Survivors' social support and self-management capabilities are important aspects to be addressed in cancer care. An aftercare consultation involving shared goal setting and care planning may help nurses provide personalized aftercare.

Stakeholder engagement from problem analysis to implementation strategies for a patient-reported experience measure in disability care: A qualitative study on the process and experiences.

BACKGROUND: In implementation science, vast gaps exist between theoretical and practical knowledge. These gaps prevail in the process of getting from problem analysis to selecting implementation strategies while engaging stakeholders including care users. OBJECTIVE: To describe a process of how to get from problem analysis to strategy selection, how to engage stakeholders, and to provide insights into stakeholders' experiences. DESIGN: A qualitative descriptive design. SETTING AND PARTICIPANTS: The setting was a care organization providing long-term care to people with acquired brain injuries who are communication vulnerable. Fourteen stakeholders (care users, professionals and researchers) participated. Data were collected by a document review, five interviews and one focus group. Inductive content analysis and deductive framework analysis were applied. INTERVENTION: Stakeholder engagement. MAIN OUTCOME MEASURES: A three-step process model and stakeholders experiences. RESULTS AND CONCLUSION: We formulated a three-step process: (a) reaching consensus and prioritizing barriers; (b) categorizing the prioritized barriers and idealization; and (c) composing strategies. Two subthemes continuously played a role in how stakeholders were engaged during the process: communication supportive strategies and continuous contact. The experiences of stakeholder participation resulted in the following themes: stakeholders and their roles, use of co-creation methods and communication supportive strategies, building relationships, stimulus of stakeholders to engage, sharing power, empowerment of stakeholders, feeling a shared responsibility and learning from one another. We conclude that the inclusion of communication-vulnerable care users is possible if meetings are prepared, communication-friendly presentations and reports are used, and relationship building is prioritized.