Effectiveness of a positive psychology and mindfulness-based app on mental health for parents of children with a neurodevelopmental disorder: study protocol of a pragmatic international randomized controlled trial.

INTRODUCTION: Parents of children with a neurodevelopmental disorder (NDD) experience more stress than parents of typically developing children. In a cocreation process with experts and parents, a low-threshold application that uses exercises based on the principles of positive psychology and mindfulness was developed. This application, called "Adappt," aims at enhancing the ability to adapt of the parents and caregivers of children with NDDs and at supporting their mental health. This protocol describes the evaluation study of the effectiveness of Adappt, its core working mechanisms and user experiences. METHOD: A pragmatic international multicenter randomized controlled trial will compare the effectiveness of Adappt with a (delayed) waitlist control condition. At least 212 parents or primary caregivers of children younger than 18 years diagnosed with or suspected of a NDD will be randomly assigned to the intervention or waitlist control condition. Participants are excluded if they have severe anxiety or depression levels or are in treatment for mental health issues. Measures will be collected online at baseline, post-intervention (1 month after baseline), and 4 and 7 months after baseline. The primary outcome is the improvement in generic sense of ability to adapt as measured with the Generic Sense of Ability to Adapt Scale (GSAAS; (Front Psychol 14:985408, 2023)) at 4-month follow-up. Secondary outcomes are mental well-being, (parental) distress, and client satisfaction with "Adappt." DISCUSSION: Results of this study will contribute to knowledge on the effectiveness of a low-threshold application for parents of children with a NDD in multiple countries. If the application is found to be effective in improving mental health, recommendations will be made for implementation in health care. TRIAL REGISTRATION: This study is registered on clinicaltrials.gov (NCT06248762) on February 8, 2024, and the Open Science Framework ( https://osf.io/5znqv ).

The effectiveness of personalised surveillance and aftercare in breast cancer follow-up: a systematic review.

PURPOSE: Breast cancer follow-up (surveillance and aftercare) varies from one-size-fits-all to more personalised approaches. A systematic review was performed to get insight in existing evidence on (cost-)effectiveness of personalised follow-up. METHODS: PubMed, Scopus and Cochrane were searched between 01-01-2010 and 10-10-2022 (review registered in PROSPERO:CRD42022375770). The inclusion population comprised nonmetastatic breast cancer patients ≥ 18 years, after completing curative treatment. All intervention-control studies studying personalised surveillance and/or aftercare designed for use during the entire follow-up period were included. All review processes including risk of bias assessment were performed by two reviewers. Characteristics of included studies were described. RESULTS: Overall, 3708 publications were identified, 64 full-text publications were read and 16 were included for data extraction. One study evaluated personalised surveillance. Various personalised aftercare interventions and outcomes were studied. Most common elements included in personalised aftercare plans were treatment summaries (75%), follow-up guidelines (56%), lists of available supportive care resources (38%) and PROs (25%). Control conditions mostly comprised usual care. Four out of seven (57%) studies reported improvements in quality of life following personalisation. Six studies (38%) found no personalisation effect, for multiple outcomes assessed (e.g. distress, satisfaction). One (6.3%) study was judged as low, four (25%) as high risk of bias and 11 (68.8%) as with concerns. CONCLUSION: The included studies varied in interventions, measurement instruments and outcomes, making it impossible to draw conclusions on the effectiveness of personalised follow-up. There is a need for a definition of both personalised surveillance and aftercare, whereafter outcomes can be measured according to uniform standards.

Evaluation of the Implementation of the Dutch Breast Cancer Surveillance Decision Aid including Personalized Risk Estimates in the SHOUT-BC Study: A Mixed Methods Approach.

BACKGROUND: To improve Shared decision-making (SDM) regarding personalized post-treatment surveillance, the Breast Cancer Surveillance Decision Aid (BCS-PtDA), integrating personalized risk information, was developed and implemented in eight hospitals. The aim of this mixed-methods study was to (1) assess the implementation and participation rates, (2) identify facilitators and barriers for use by health care professionals (HCPs), (3) quantify the observed level of SDM, and (4) evaluate risk communication and SDM application in consultations. METHODS: Implementation and participation rates and patients' BCS-PtDA use were calculated using hospital registry data and BCS-PtDA log data. HCPs' perspective on facilitators and barriers were collected using the MIDI framework. Observed SDM levels in consultation transcripts were quantified using the OPTION-5 scale. Thematic analysis was performed to assess consultation content. RESULTS: The average PtDA implementation and participation rates were, respectively, 26% and 61%. HCPs reported that the PtDA supported choice awareness. Reported barriers for implementation were mainly increased workload and a lack of perceived benefits. The consultation analysis (n = 64) showed patients were offered a choice, but deliberation was lacking. Risk communication was generally adequate. DISCUSSION: When the BCS-PtDA was used, patients were clearly given a choice regarding their post-treatment surveillance, but information provision and SDM application can be improved.

Compas-Y: A mixed methods pilot evaluation of a mobile self-compassion training for people with newly diagnosed cancer.

Objective: Compas-Y is a compassionate mind training app that was co-designed to be fully adapted to mobile technology and to people with newly diagnosed cancer. This study aimed to evaluate the use, appreciation and impact of the app. Methods: Seventy-one people with cancer who created an app account were included (38% breast cancer, 72% diagnosed <4 months ago, 76% received chemotherapy). Participants had very high baseline scores of self-compassion. In a convergent mixed methods design, back-end log-data (n = 71), pre-post surveys (n = 34) and semi-structured interviews (n = 23) collected for >8 weeks and were concurrently analysed using joint displays. Results: About half of the participants (45%) used 4 of the 6 modules. Compas-Y was highly appreciated, with all content considered relevant and a source of support. Experienced benefits related to improved mental health. Particularly, we found significant changes in anxiety, but not in depression or well-being. In the interviews, people reported experiencing more rest and more positive emotions due to using the app. Process benefits included significant reductions in self-criticism (inadequate self and self-blame), but not self-compassion. In the interviews, people reported improved self-compassion and less self-criticism, more self-awareness, recognition and support, and improved emotion regulation and coping. The surveys did not capture the full range of outcomes that participants reported in the interviews. Conclusions: Compas-Y is a highly appreciated mobile intervention that supported users in aspects of their mental health. Findings are discussed in terms of reach and adherence, app functionalities, co-design and tailoring of cancer-related and compassion-based eHealth.

Needs and preferences of breast cancer survivors regarding outcome-based shared decision-making about personalised post-treatment surveillance.

PURPOSE: In this study, we explored how patients experience current information provision and decision-making about post-treatment surveillance after breast cancer. Furthermore, we assessed patients' perspectives regarding less intensive surveillance in case of a low risk of recurrence. METHODS: We conducted semi-structured interviews with 22 women in the post-treatment surveillance trajectory in seven Dutch teaching hospitals. RESULTS: Although the majority of participants indicated a desire for shared decision-making (SDM) about post-treatment surveillance, participants experienced no SDM. Information provision was often suboptimal and unstructured. Participants were open for using risk information in decision-making, but hesitant towards less intensive surveillance. Perceived advantages of less intensive surveillance were: less distressing moments, leaving the patient role behind, and lower burden. Disadvantages were: fewer moments for reassurance, fear of missing recurrences, and a higher threshold for aftercare for side effects. CONCLUSIONS: SDM about post-treatment surveillance is desirable. Although women are hesitant about less intensive surveillance, they are open to the use of personalised risk assessment for recurrences in decision-making about surveillance. IMPLICATIONS FOR CANCER SURVIVORS: To facilitate SDM about post-treatment surveillance, the timing and content of information provision should be improved. Risk information should be provided in an accessible and understandable way. Moreover, fear of cancer recurrence and other personal considerations should be addressed in the process of SDM.

Assessment Tools for Measuring Health Literacy and Digital Health Literacy in a Hospital Setting: A Scoping Review.

Assessment of (digital) health literacy in the hospital can raise staff awareness and facilitate tailored communication, leading to improved health outcomes. Assessment tools should ideally address multiple domains of health literacy, fit to the complex hospital context and have a short administration time, to enable routine assessment. This review aims to create an overview of tools for measuring (digital) health literacy in hospitals. A search in Scopus, PubMed, WoS and CINAHL, following PRISMA guidelines, generated 7252 hits; 251 studies were included in which 44 assessment tools were used. Most tools (57%) were self-reported and 27% reported an administration time of <5 min. Almost all tools addressed the domain 'understanding' (98%), followed by 'access' (52%), 'apply' (50%), 'appraise' (32%), 'numeracy' (18%), and 'digital' (18%). Only four tools were frequently used: the Newest Vital Sign (NVS), the Short Test of Functional Health Literacy for Adults ((S)TOFHLA), the Brief Health Literacy Screener (BHLS), and the Health Literacy Questionnaire (HLQ). While the NVS and BHLS have a low administration time, they cover only two domains. HLQ covers the most domains: access, understanding, appraise, and apply. None of these four most frequently used tools measured digital skills. This review can guide health professionals in choosing an instrument that is feasible in their daily practice, and measures the required domains.

Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design.

BACKGROUND: Although the treatment for breast cancer is highly personalized, posttreatment surveillance remains one-size-fits-all: annual imaging and physical examination for at least five years after treatment. The INFLUENCE nomogram is a prognostic model for estimating the 5-year risk for locoregional recurrences and second primary tumors after breast cancer. The use of personalized outcome data (such as risks for recurrences) can enrich the process of shared decision-making (SDM) for personalized surveillance after breast cancer. OBJECTIVE: This study aimed to develop a patient decision aid (PtDA), integrating personalized risk calculations on risks for recurrences, to support SDM for personalized surveillance after curative treatment for invasive breast cancer. METHODS: For the development of the PtDA, the International Patient Decision Aids Standards development process was combined with a mixed methods design inspired by the development process of previously developed PtDAs. In the development, 8 steps were distinguished: establishing a multidisciplinary steering group; definition of the end users, scope, and purpose of the PtDA; assessment of the decisional needs of end users; defining requirements for the PtDA; determining the format and implementation strategy for the PtDA; prototyping; alpha testing; and beta testing. The composed steering group convened during regular working-group sessions throughout the development process. RESULTS: The "Breast Cancer Surveillance Decision Aid" consists of 3 components that support the SDM process: a handout sheet on which personalized risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualized and which contains an explanation about the decision for surveillance and a login code for a web-based deliberation tool; a web-based deliberation tool, including a patient-reported outcome measure on fear of cancer recurrence; and a summary sheet summarizing patient preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Beta testing is currently ongoing. CONCLUSIONS: We developed an acceptable and usable PtDA that integrates personalized risk calculations for the risk for recurrences to support SDM for surveillance after breast cancer. The implementation and effects of the use of the "Breast Cancer Surveillance Decision Aid" are being investigated in a clinical trial.

Appreciating the Good Things in Life During the Covid-19 Pandemic: A Randomized Controlled Trial and Evaluation of a Gratitude App.

The Covid-19 pandemic has had many negative consequences on the general public mental health. The aim of this study was to test the effectiveness of and satisfaction with an app with gratitude exercises to improve the mental health of people with reduced mental well-being due to the Covid-19 pandemic, as well as potential mechanisms of well-being change and dose-response relationships. A two-armed randomized controlled trial design was used, with two groups receiving the 6-week gratitude intervention app either immediately (intervention group, n = 424) or after 6 weeks (waiting list control group, n = 425). Assessments took place online at baseline (T0), six weeks later (T1) and at 12 weeks (T2), measuring outcomes (i.e., mental well-being, anxiety, depression, stress), and potential explanatory variables (i.e., gratitude, positive reframing, rumination). Linear mixed models analyses showed that when controlled for baseline measures, the intervention group scored better on all outcome measures compared to the control group at T1 (d = .24-.49). These effects were maintained at T2. The control group scored equally well on all outcome measures at T2 after following the intervention. Effects of the intervention on well-being were partially explained by gratitude, positive reframing, and rumination, and finishing a greater number of modules was weakly related to better outcomes. The intervention was generally appealing, with some room for improvement. The results suggest that a mobile gratitude intervention app is a satisfactory and effective way to improve the mental health of the general population during the difficult times of a pandemic.

Integrating Top-down and Bottom-up Requirements in eHealth Development: The Case of a Mobile Self-compassion Intervention for People With Newly Diagnosed Cancer.

BACKGROUND: Psychosocial eHealth interventions for people with cancer are promising in reducing distress; however, their results in terms of effects and adherence rates are quite mixed. Developing interventions with a solid evidence base while still ensuring adaptation to user wishes and needs is recommended to overcome this. As most models of eHealth development are based primarily on examining user experiences (so-called bottom-up requirements), it is not clear how theory and evidence (so-called top-down requirements) may best be integrated into the development process. OBJECTIVE: This study aims to investigate the integration of top-down and bottom-up requirements in the co-design of eHealth applications by building on the development of a mobile self-compassion intervention for people with newly diagnosed cancer. METHODS: Four co-design tasks were formulated at the start of the project and adjusted and evaluated throughout: explore bottom-up experiences, reassess top-down content, incorporate bottom-up and top-down input into concrete features and design, and synergize bottom-up and top-down input into the intervention context. These tasks were executed iteratively during a series of co-design sessions over the course of 2 years, in which 15 people with cancer and 7 nurses (recruited from 2 hospitals) participated. On the basis of the sessions, a list of requirements, a final intervention design, and an evaluation of the co-design process and tasks were yielded. RESULTS: The final list of requirements included intervention content (eg, major topics of compassionate mind training such as psychoeducation about 3 emotion systems and main issues that people with cancer encounter after diagnosis such as regulating information consumption), navigation, visual design, implementation strategies, and persuasive elements. The final intervention, Compas-Y, is a mobile self-compassion training comprising 6 training modules and several supportive functionalities such as a mood tracker and persuasive elements such as push notifications. The 4 co-design tasks helped overcome challenges in the development process such as dealing with conflicting top-down and bottom-up requirements and enabled the integration of all main requirements into the design. CONCLUSIONS: This study addressed the necessary integration of top-down and bottom-up requirements into eHealth development by examining a preliminary model of 4 co-design tasks. Broader considerations regarding the design of a mobile intervention based on traditional intervention formats and merging the scientific disciplines of psychology and design research are discussed.

Effectiveness and implementation of SHared decision-making supported by OUTcome information among patients with breast cancer, stroke and advanced kidney disease: SHOUT study protocol of multiple interrupted time series.

INTRODUCTION: Within the value-based healthcare framework, outcome data can be used to inform patients about (treatment) options, and empower them to make shared decisions with their health care professional. To facilitate shared decision-making (SDM) supported by outcome data, a multicomponent intervention has been designed, including patient decision aids on the organisation of post-treatment surveillance (breast cancer); discharge location (stroke) and treatment modality (advanced kidney disease), and training on SDM for health care professionals. The SHared decision-making supported by OUTcome information (SHOUT) study will examine the effectiveness of the intervention and its implementation in clinical practice. METHODS AND ANALYSIS: Multiple interrupted time series will be used to stepwise implement the intervention. Patients diagnosed with either breast cancer (N=630), stroke (N=630) or advanced kidney disease (N=473) will be included. Measurements will be performed at baseline, three (stroke), six and twelve (breast cancer and advanced kidney disease) months. Trends on outcomes will be measured over a period of 20 months. The primary outcome will be patients' perceived level of involvement in decision-making. Secondary outcomes regarding effectiveness will include patient-reported SDM, decisional conflict, role in decision-making, knowledge, quality of life, preferred and chosen care, satisfaction with the intervention, healthcare utilisation and health outcomes. Outcomes regarding implementation will include the implementation rate and a questionnaire on the health care professionals' perspective on the implementation process. ETHICS AND DISSEMINATION: The Medical research Ethics Committees United in Nieuwegein, the Netherlands, has confirmed that the Medical Research Involving Human Subjects Act does not apply to this study. Bureau Onderzoek & Innovatie of Santeon, the Netherlands, approved this study. The results will contribute to insight in and knowledge on the use of outcome data for SDM, and can stimulate sustainable implementation of SDM. TRIAL REGISTRATION NUMBER: NL8374, NL8375 and NL8376.

Further Validation of a Dutch Translation of the Sussex Oxford Compassion for the Self Scale in Samples of Crisis Line Volunteers, Military Personnel and Nursing Students.

Self-compassion is considered an important, transdiagnostic factor for mental health. The Sussex Oxford Compassion for the Self Scale (SOCS-S) is a recently developed comprehensive measure of self-compassion, that was found to have promising psychometric properties among health care staff and university students in the initial validation study. The aim of this study is the further psychometric evaluation of a Dutch translation of the SOCS-S in different populations and settings. The SOCS-S was administered in three different Dutch samples [crisis line volunteers (n = 560), military personnel (n = 244) and nursing students (n = 255)]. The results confirm the five-factor structure of the SOCS-S and its reliability and criterion and convergent validity across the samples. Measurement invariance was demonstrated for gender in two samples and for age in all three samples, but not across professions. Finally, the SOCS-S was found to explain additional variance in mental health in comparison to a widely used self-compassion measure (SCS-SF).

Experiences of Self-Criticism and Self-Compassion in People Diagnosed With Cancer: A Multimethod Qualitative Study.

Objective: Self-criticism is a self-condemning and self-compassion a supportive style of self-to-self relating. These concepts have increasingly been studied in people with cancer, but mainly with quantitative studies. This study is the first to explore how adult cancer patients experience self-criticism and self-compassion in the context of their illness. Design: A multimethod qualitative study design was used, combining individual and group semi-structured interviews. Participants were 26 people with cancer who familiarized themselves with the topic by doing various self-compassion exercises for 2 weeks prior to the interview. Individual and group interviews were analyzed together using thematic analysis. Results: Four themes regarding self-criticism were identified: (1) being harsh or strict with yourself, (2) feeling guilty or angry, (3) feeling useless or like a burden, (4) feeling ashamed and not wanting to show weakness. Six themes regarding self-compassion were identified: (1) being mild to yourself, (2) guarding your boundaries, (3) accepting the illness and limitations, (4) maintaining a positive perspective, (5) connecting to others, and (6) taking responsibility for your health. Conclusion: Our findings offer insights into practical and daily life experiences of self-criticism and self-compassion of people with cancer, which can aid the further development of theory, scales and interventions.

Mental wellbeing in crisis line volunteers: understanding emotional impact of the work, challenges and resources. A qualitative study.

BACKGROUND: : Crisis line volunteers are a valuable addition to formal care. Although there is growing evidence of decreased mental wellbeing of crisis line volunteers, a comprehensive overview of perceived emotional impact from the perspective of volunteers is lacking. Purpose: This study explores the emotional impact, the challenges that crisis line volunteers encounter, and the resources that they use to cope with these challenges. METHOD: : A grounded theory approach was used to explore the subjective experiences of the participants. Four focus groups with twentytwo active volunteers and eight interviews with former volunteers were conducted. RESULTS: : Results provide an overview of emotions that volunteers experience in their work. (e.g., gratification, compassion, frustration, and powerlessness). Challenges are related to the characteristics of callers (e.g., inappropriate behaviour) and topics of the calls (e.g., suicidality). Resources to cope adequately with negative emotions are, among others, a self-compassionate attitude and good training. CONCLUSION: : This study highlights the importance of training of volunteers in dealing with specific callers, and gives input for the development of interventions aimed at increasing personal resources, such as awareness of positive emotions and self-compassion. These resources can help to increase the mental wellbeing of crisis line volunteers and reduce turn-over rates.

The Role of Self-Compassion in the Job Demands-Resources Model, an Explorative Study among Crisis Line Volunteers.

The job demands-resources (JD-R) model has hardly been studied in volunteer organizations and there is a scarcity of studies evaluating self-compassion as a personal resource within the JD-R model. The present study addresses these gaps in current knowledge, first by examining the applicability of the JD-R model in a crisis line volunteer organization. Second, self-compassion is examined, both in terms of its moderating role on the exhaustion process as well as its role on the motivation process. Structural equation modelling was used for the analyses. The influence on the organizational outcome 'compassion towards others' was examined using a multiple regression analysis. The results showed that the JD-R model has an acceptable fit on this sample and supports the central assumption that exhaustion and motivation are two independent but related processes. This study provides evidence that self-compassion is a valuable addition to the JD-R model, as it has an indirect effect on both processes, and increases the explained variance in compassion towards others by 7% through the exhaustion process and by 3% through the motivational process. These findings point to the importance of focusing on self-compassion in training and supervision in volunteer organizations.

How Demanding Is Volunteer Work at a Crisis Line? An Assessment of Work- and Organization-Related Demands and the Relation With Distress and Intention to Leave.

Background: Crisis line services, run by volunteers, offer a listening ear 24/7 to people who cannot or do not want to use professional help. Although previous studies have identified various potential stressors crisis line volunteers face, as yet a comprehensive assessment is lacking with regards to the frequency and perceived stressfulness of work- and organization-related demands, and their relationship with distress and a volunteer's intention to leave. Objective: To identify the frequency and impact of particular stressful situations (demands). In addition, to examine the extent to which these demands are associated with volunteers' demographics, distress and intention to leave the crisis line service. Method: In a cross-sectional study among 543 volunteers of a Dutch crisis line service the participants filled out a questionnaire about their experience of a large number of work- and organization-related demands and their perceived stressfulness. To calculate the impact of demands, the occurrence and stressfulness were multiplied. In addition, work-related distress, intention to leave the crisis line service as well as a number of demographics and work-related characteristics were assessed. Results: Work-related demands with the highest impact on volunteers were calls from people with psychiatric problems and suicidal intentions. "Having no time for a break" was the organization-related demand with the highest impact on volunteers. Eighteen percentage of the volunteers scored moderate or high on distress and 4% had the intention to leave the crisis line service within 1 year. Most work- and organization-related demands were positively associated with volunteers' distress and intention to leave the organization. Being older, being male and spending more hours per week volunteering were significantly, positively correlated with work-related demands. The total explained variance for distress was 16% and for intention to leave 13%. Conclusion: Although most crisis line volunteers experienced low impact from work- and organization-related demands, these demands were significantly related to experienced distress and the intention to leave crisis line service. For volunteers with moderate to high distress it can be useful to implement interventions aimed at increasing personal resources to help them deal with the challenges of the work at the crisis line.

Follow-up after breast cancer: Variations, best practices, and opportunities for improvement according to health care professionals.

OBJECTIVE: Follow-up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow-up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow-up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow-up as proposed by HCPs. METHODS: Semi-structured in-depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow-up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach. RESULTS: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines. Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare. CONCLUSIONS: Variation in follow-up existed between hospitals. Shared decision-making (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences.

Web-based self-help intervention for partners of cancer patients based on acceptance and commitment therapy and self-compassion training: a randomized controlled trial with automated versus personal feedback.

PURPOSE: To evaluate the effectiveness of two versions (personal or automated feedback) of a psychological Web-based self-help intervention targeting partners of cancer patients. The intervention was based on acceptance and commitment therapy (ACT) and self-compassion training. Participants' adherence and their satisfaction were also studied. METHODS: Two hundred three partners of patients with heterogeneous entities of cancer were randomized into three conditions: personal feedback (PF) (n = 67), automated feedback (AF) (n = 70), or waiting list (WL) control (n = 66). Participants completed measures at baseline (T0) and post-intervention (T1; 3 months after baseline) to assess psychological distress (HADS; primary outcome), positive mental health, caregiver strain, general health (secondary outcomes), posttraumatic growth, resilience, self-compassion, psychological flexibility, sense of mastery, and relational communication style (process measures). Participants in the two experimental conditions also completed these measures at follow-up (T2; 6 months after baseline). RESULTS: There was no significant difference in change in psychological distress, positive mental health, caregiver strain and general health from T0 to T1 for either of the experimental conditions compared with the WL-condition. However, when compared to a WL-condition, the PF-condition was effective in increasing psychological flexibility (effect size d = 0.49) and resilience (d = 0.12) and decreasing overprotection (d = 0.25), and the AF-condition was effective in reducing overprotection (d = 0.36) and improving protective buffering (d = 0.36). At follow-up, the PF-condition was more effective than the AF-condition for improving mental health (d = 0.36), psychological flexibility (d = 0.60), mastery (d = 0.48), and protective buffering (d = 0.24). Participants positively appreciated the intervention and 69% participants were adherent. CONCLUSION: This study demonstrates that a Web-based intervention based on ACT and self-compassion training with automated or personal feedback does not seem to improve psychological distress; however, it may have the potential to support partners of cancer patients to cope with the difficult situation they are facing. The condition with personal feedback seemed to be more beneficial.

Blended psychosocial support for partners of patients with ALS and PMA: results of a randomized controlled trial.

Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA), aimed at enhancing feeling of control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using a wait-list control design was conducted. Caregiver-patient dyads were randomly assigned to either the support program (n = 74) or to a wait-list control group (n = 74). The support program, based on Acceptance and Commitment Therapy, consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. Participants filled in questionnaires at baseline, 3 and 6 months. Caregivers' feeling of control over caregiving was assessed using two self-efficacy measures. Primary outcome was caregivers' psychological distress. Secondary outcomes included caregiver burden, caregiver quality of life and patients' quality of life and psychological distress. Intention-to-treat and per-protocol analyses were performed using linear mixed models. Results: The support program had no effect on the primary or secondary outcomes, despite a significant positive effect on the intervening variable self-efficacy with regard to control over thoughts. Almost half of the caregivers did not complete the intervention with the most frequently reported reason being lack of time. Caregivers who completed the intervention evaluated the support program positively. Conclusions: The support program did not reduce distress of partners of patients with ALS/PMA but may be beneficial by increasing feeling of control over the caregiving situation. The high level of intervention drop outs may have limited the ability to detect an intervention effect.Trial registration: Netherlands Trial Registry NTR5734, registered 28 March 2016.

Developing a digital training tool to support oncologists in the skill of information-provision: a user centred approach.

BACKGROUND: For patients with cancer, being well informed by their oncologist about treatment options and the implications thereof is highly relevant. Communication skills training (CST) programs have shown to be effective in improving clinicians' communication skills, yet CSTs are time-consuming, inconvenient to schedule, and costly. Online education enables new ways of accessible learning in a safe and personalised environment. AIM AND METHODS: We describe the design of a digital CST-tool for information provision skills that meets oncologists' learning needs. We used the CeHRes Roadmap for user-centred design as a guiding framework. Phase 1 (Contextual Inquiry) involved consultation of the literature and a focus group interview study to uncover the learning needs and training preferences of clinicians' regarding a digital training for the skill of information-provision. In phase 2 (Value Specification), two multidisciplinary expert panels specified the learning content and format of a digital training. Phase 3 (Design) encompassed an iterative development process, including two user group assessment sessions and 5 individual user sessions in which prototypes were tested. All sessions were recorded and independently analyzed by two researchers. RESULTS: Based on literature and consultation of the users in the inquiry phase of the development process, and on expert opinion in the value specification phase, relevant (sub) skills and user requirements were defined to consider for the digital training format. It was decided to develop a conventional e-learning and a chatbot. Personalization and interactivity were integrated in the prototypes by including features that allow for e.g., choosing text, video or animation; to upload video-recorded consultations to receive peer-feedback; and to consult a communication expert. Results revealed that, overall, participants expressed a willingness to use a digital training tool to acquire information-provision skills. Individual user testing (including junior clinicians), indicated a preference for the chatbot over the e-learning. CONCLUSION: We offer a description of extensive development work which was conducted in collaboration with multiple health care professionals to iteratively develop two innovative prototypes of digital tools that would appropriately engage oncologists in learning effective information giving skills. The resulting prototypes were well appreciated and thus provide a solid basis for further development and testing.

Exploring facilitators and barriers to using a person centered care intervention in a nursing home setting.

Person-centered care (PCC) interventions have the potential to improve resident well-being in nursing homes, but can be difficult to implement. This study investigates perceived facilitators and barriers reported by nursing staff to using a PCC intervention consisting of three components: assessment of resident well-being, planning of well-being support, and behavioral changes in care to support resident well-being. Our explorative mixed method study combined interviews (n = 11) with a longitudinal survey (n = 132) to examine which determinants were most prevalent and predictive for intention to use the intervention and actual implementation 3 months later (n = 63). Results showed that perceived barriers and facilitators were dependent on the components of the intervention. Assessment of resident well-being required a stable nursing home context and a detailed implementation plan, while planning of well-being support was impeded by knowledge. Behavioral changes in nursing care required easy integration in daily caring tasks and social support.