The BOOST Paediatric Advance Care Planning Intervention for Adolescents with Cancer and Their Parents: Development, Acceptability and Feasibility

Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient’s values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) – an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. Methods Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with 9 healthcare professionals, 4 adolescents and young adults with cancer and 6 parents; 5b) Feasibility test of core intervention components with 3 families, including interviews about their experiences. Results The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: 4 ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. Conclusion The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

The Role of Pain in the Lives of Patients with Psoriasis: A Qualitative Study on an Inadequately Addressed Symptom

Background: Patients with psoriasis commonly report experiencing severe sensory symptoms, and the burden of these symptoms can extend beyond unpleasant experiences to impair patients’ health-related quality of life (HRQL). However, the symptom of pain and its consequences are still poorly understood in psoriasis patients. Objective: To understand the quality and intensity of pain associated with psoriasis as well as its interference with daily function in patients with psoriasis. Methods: Three focus groups and four interviews with psoriasis patients were conducted (n = 25). A trained facilitator used a semi-structured interview guide based on a literature review and a theory-driven approach. Two researchers independently coded the narratives and reached a consensus on the major themes using NVivo 12 software. Results: Our analysis produced five main themes regarding pain. (1) Perception of pain was illustrated through intense descriptors. (2) Patients identified pain triggers, including self-inflicted triggers. (3) Patients found coping strategies to deal with pain, including suppression of sensory experience. (4) Emotional suffering was linked primarily to the compulsion to continue scratching despite repeated efforts to stop and the failure of physicians to acknowledge the burden of the pain, which led to inadequate pain management. (5) Pain led to an overt impact on HRQL in these patients through interference with daily activity, intimate relationships, and sleep. Conclusions: Pain can be a significant hardship for patients with psoriasis. We encourage clinicians to inquire about pain separate from pruritus and to consider HRQL impacts of their patients’ pain when determining treatments.

Development and Pilot Testing of a Food Literacy Curriculum for High School-Aged Adolescents

Adolescent obesity and poor diet quality are increasingly prevalent and could be mitigated with attainment of food literacy. However, as these programs for adolescents are lacking, the purpose of this project was to develop a food literacy curriculum for high school-aged adolescents. The curriculum was designed in accordance with food literacy attributes and components utilizing Backward Design, Social Cognitive Theory, and Constructivism. After expert committee review, pilot testing was completed in two low-income communities by a trained facilitator and observer. Detailed observations were collected during pilot testing to assess achievement of learning objectives. Modifications were made to lesson procedures as required. The resulting curriculum, Teens CAN: Comprehensive Food Literacy in Cooking, Agriculture, and Nutrition, contains 12 modules of experiential lessons and application activities within three topics. Agriculture lessons concentrate on the food supply chain and food environments; nutrition lessons include food groups while focusing on nutrients of concern for underconsumption; and cooking lessons include food safety, budgeting, and preparation. Teens CAN provides a comprehensive and necessary approach to advancing food literacy in adolescents. Future directions include assessing dietary implications after participating in Teens CAN lessons and employment of an innovative two-tiered cross-age teaching model.

Engaging Youth in Placemaking: Modified Behavior Mapping

Typically excluded from conversations about place, youth are becoming recognized as agents of change in placemaking. This article explores adapting a quantitative research method, behavior mapping, into a more youth-friendly qualitative participatory action research (PAR) method for placemaking projects, namely modified behavior mapping (MBM). The goal of MBM is to instigate placemaking conversations with youth with an understanding of an aspect of the lived experience of place and existing behavior. Sites are divided into observation zones, and youth are led through the zones by a trained facilitator. Like the quantitative method, MBM requires a list of behaviors of interest and a basemap. Behaviors are organized into groups on an observation sheet in a youth-friendly checklist format. A new checklist is printed for each observation zone. Basemaps can be an aerial photo or a downloaded map; however, creating a basemap by taking measurements will create science, technology, engineering, and math (STEM) learning opportunities. While in the observation zone, youth check the behaviors observed. Unlike the quantitative method, MBM does not require strict data collection protocols or a statistical analysis which makes the method more youth-friendly. Instead, MBM affords an opportunity for youth to reflect on their use of space and on others’ use of space. Results are disseminated through focus group discussions in order to create design programs or designs of place.

Early Mobility for Critically Ill Patients: Building Staff Commitment Through Appreciative Inquiry

Background Immobility contributes to many adverse effects in critically ill patients. Early progressive mobility can mitigate these negative sequelae but is not widely implemented. Appreciative inquiry is a quality improvement method/change philosophy that builds on what works well in an organization. Objectives To explore whether appreciative inquiry would reinvigorate an early progressive mobility initiative in a medical intensive care unit and improve and sustain staff commitment to providing regular mobility therapy at the bedside. Secondary goals were to add to the literature about appreciative inquiry in health care and to determine whether it can be adapted to critical care. Methods Staff participated in appreciative inquiry workshops, which were conducted by a trained facilitator and structured with the appreciative inquiry 4-D cycle. Staff members’ attitudes toward and knowledge of early progressive mobility were evaluated before and after the workshops. Performance of early progressive mobility activities was recorded before and 3 and 10 months after the workshops. Results Sixty-seven participants completed the program. They rated the workshops as successfully helping them to understand the importance of early progressive mobility (98%), explain their responsibility to improve patient outcomes (98%), and engender a greater commitment to patients and the organization (96%). Regarding mobility treatments, at 3 months orders had improved from 62% to 88%; documentation, from 52% to 89%; and observation, from 39% to 87%. These improvements were maintained at 10 months. Conclusion Participation in the workshops improved the staff’s attitude toward and performance of mobility treatments. Appreciative inquiry may provide an adjunct to problem-based quality improvement techniques.

AB1273 TEACHING RARE DISEASES THROUGH ROLE PLAY: RESULTS OF AN EXPERIMENTAL WORKSHOP ON RAYNAUD PHENOMENON

Background:Systemic autoimmune diseases are mostly taught through theoretical lectures, which do not allow for the acquisition of physical examination skills and semiologic confrontation.Objectives:We report herein the results of a pilot experiment using role-play to teach how to manage patients with Raynaud phenomenon (RP).Methods:We developed a workshop that consisted of two 30-minute OSCE (Objective and Structured Clinical Examination) stations. Students were divided into groups of 4 to 5 persons. On each station, 2 students were actors and 2 were observers. After a short briefing, students played a 15-minute scenario and then had a 15-minute debriefing.The first station simulated the case of a 26-year old woman referred for suspected RP. Students were instructed to perform clinical history taking and physical examination of the patient, formulated relevant diagnosis hypotheses and prescribe any additional necessary exams. Students had to suspect the diagnosis of idiopathic RP. The simulated patient was played by a trained facilitator with expertise on RP.The second station simulated the case of a 56-year-old woman referred for RP complicated by digital ulcers. Students received the same instructions as before. They had to suspect the diagnosis of systemic sclerosis. The patient role was held by a real patient with systemic sclerosis, followed by the physician who was supervising the station, who had received prior training and who agreed to participate in this training.At the end of the workshop, the students had to complete a satisfaction questionnaire.Results:A total of 21 students participated in the workshop and 17 completed the survey. The students were “very satisfied” (Likert 4/4) of this training in 94%. They considered this workshop “not very stressful” (Likert 2/4) and “very formative” (Likert 4/4) in 71%, but “a little short” (Likert 2/4) in 88%. After taking this training, all students felt “a little” (Likert 3/4, 24%) or “much more comfortable” (Likert 4/4, 76%) to manage patients with idiopathic RP; and “a little” (Likert 3/4, 65%) or “much more comfortable” (Likert 4/4, 35%) to manage patients with systemic sclerosis. All would recommend this workshop to other students.When asked about the strengths of this training, the students mentioned the benefits of being put in an immersive situation, which allowed for a better acquisition of practical skills (especially physical examination) and a more interactive exchange with teachers; as well as the confrontation with a real patient, which allowed for a better retention of semiologic findings and associated a relational component to this experience. The main weak points reported were its short duration and the stress induced by being observed during the simulation.Conclusion:This workshop suggests the interest and feasibility on a small group of students of a rare diseases awareness workshop using role-play. The evaluation of its pedagogical efficiency and its generalization on large student promotions are being considered.Acknowledgments:NoneDisclosure of Interests:Sebastien SANGES: None declared, Sandrine Morell-Dubois: None declared, Meryem-Maud Farhat: None declared, Morgane Assaraf: None declared, Marc Lambert: None declared, Vincent Sobanski: None declared, David Launay Grant/research support from: Dr. Launay reports personal fees from Actelion, grants and personal fees from Takeda, grants and personal fees from CSL Behring, outside the submitted work., Eric Hachlla: None declared

ONLINE MINDFULNESS PROGRAM FOR LONELY OLDER ADULTS

Mindfulness meditation is a cognitive state of self-awareness that promotes emotional regulation and change in self-perspective. Mindfulness has been applied to address loneliness, stress, and anxiety, demonstrating consistent health benefits. The purpose of this study was to test the feasibility of an online mindfulness program and to measure its impact on well-being among lonely older adults. The intervention consisted of seven one-hour weekly online modules led by a trained facilitator via WebEx. Engagement was high with 63% of participants attending four or more sessions. Pre/post survey data (N=42) found decreased anxiety, stress, and improvement in mindfulness, purpose in life, and resilience. This program demonstrates that online mindfulness programs may be of great benefit for lonely older adults. Future research will include larger samples to investigate further impacts.

What Patients Want in a Smartphone App That Supports Colonoscopy Preparation: Qualitative Study to Inform a User-Centered Smartphone App (Preprint)

BACKGROUND The preparation for colonoscopy is elaborate and complex. In the context of colorectal cancer screening, up to 11% of patients do not keep their colonoscopy appointments and up to 33% of those attending their appointments have inadequately cleansed bowels that can delay cancer diagnosis and treatment. A smartphone app may be an acceptable and wide-reaching tool to improve patient adherence to colonoscopy. OBJECTIVE The aim of this qualitative study was to employ a user-centered approach to design the content and features of a smartphone app called colonAPPscopy to support individuals preparing for their colonoscopy appointments. METHODS We conducted 2 focus group discussions (FGDs) with gastroenterology patients treated at the McGill University Health Centre in Montreal, Canada. Patients were aged 50 to 75 years, were English- or French-speaking, and had undergone outpatient colonoscopy in the previous 3 months; they did not have inflammatory bowel disease or colorectal cancer. FGDs were 75 to 90 min, conducted by a trained facilitator, and audiotaped. Participants discussed the electronic health support tools they might use to help them prepare for the colonoscopy, the content needed for colonoscopy preparation, and the features that would make the smartphone app useful. Recordings of FGDs were transcribed and analyzed using thematic analysis to identify key user-defined content and features to inform the design of colonAPPscopy. RESULTS A total of 9 patients (7 male and 2 female) participated in one of 2 FGDs. Main content areas focused on bowel preparation instructions, medication restrictions, appointment logistics, communication, and postcolonoscopy expectations. Design features to make the app useful and engaging included minimization of data input, reminders and alerts for up to 7 days precolonoscopy, and visual aids. Participants wanted a smartphone app that comes from a trusted source, sends timely and tailored messages, provides reassurance, provides clear instructions, and is simple to use. CONCLUSIONS Participants identified the need for postcolonoscopy information as well as reminders and alerts in the week before colonoscopy, novel content, and features that had not been included in previous smartphone-based strategies for colonoscopy preparation. The ability to tailor instructions made the smartphone app preferable to other modes of delivery. Study findings recognize the importance of including potential users in the development phase of building a smartphone app.

Urban, Suburban, and Rural: Adolescents’ Use and Preferences for Fitness Promotion Technologies across Communities

Introduction. An understanding of adolescents’ use of technology across ages and communities could allow for future targeted obesity intervention strategies. Methods. Focus groups of adolescents from rural, suburban, and urban cities in three states were conducted. Focus groups were led by a trained facilitator to explore how participants used technologies and whether they applied them for fitness purposes. All focus groups were audio recorded and manually transcribed. Analysis was conducted by three investigators using an iterative process. Results. Five focus groups included adolescents between the ages of 12 and 18 years (20 females and 8 males.) Three themes were derived from our data. First, we found age differences regarding technology applied to fitness. Younger participants described technology as a complement to fitness; older participants viewed technology as a motivator for fitness. Second, differences in fitness approaches existed between rural and urban adolescents. Adolescents in rural communities reported focusing on the outdoors for fitness, while urban adolescents relied on fitness-oriented video games. Both rural and urban teens related having a lack of fitness-focused resources in their communities. Conclusions. Our findings indicate differences in adolescents’ application of technology for fitness. Despite adolescents’ differing uses of technology across communities, a common need exists to expand their resources.

Combining Different Types of Data in Studying Attitudes to English as a Lingua Franca

This paper deals with the attitudes of Croatian speakers to ELF, in particular to its pronunciation. Four methods were combined to reach conclusions about the status of ELF in Croatia: diary study, teacher interviews, a preliminary focus group interview and a survey. Whilst the first three methods revealed that the subjects regularly disfavour ‘bad pronunciation’, the survey showed that when it actually comes to talking to either native or non-native speakers, the subjects turned out to be tolerant to a slight accent. This clearly suggests a case of what is known as linguistic schizophrenia (B.B. Kachru 1977; Seidlhofer 2001). However, there are notable differences among groups of participants depending on variables such as professional profile, gender, degree of ease and success in learning pronunciation, and national pride. In any case, the combination of these methods proved to be a very good way to deal with the topic. The diary study is a valuable method to look into everyday practices and can feed nicely into survey questions. The preliminary survey highlighted the importance of different groups of participants and the need for groups of questions focusing around different factors. The preliminary focus group interview showed that it is crucial to have a single homogenous group of participants, as well as a trained facilitator. Finally, teacher interviews pointed to the possibility of similar attitudes being held by university teachers and the students they teach, which suggests that attitudes may be perpetuated. Overall, triangulation across methods and participants in the way proposed in the present paper provided a wealth of data, allowing a bottom-up view and a top-down view on the state of ELF in Croatia.