Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms

2016 ◽  
Vol 34 (2) ◽  
pp. 98-105 ◽  
Author(s):  
Argerie Tsimicalis ◽  
Sylvie Le May ◽  
Jennifer Stinson ◽  
Janet Rennick ◽  
Marie-France Vachon ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Parental Engagement ◽  
Communication Tool ◽  
Translation Process ◽  
Interactive Communication ◽  
Linguistic Validation ◽  
Cancer Symptoms ◽  
Forward Translation ◽  
French Speaking

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

Usability Testing of an Interactive Communication Tool to Help Children Express Their Cancer Symptoms

2018 ◽  
Vol 35 (5) ◽  
pp. 320-331 ◽  
Author(s):  
Argerie Tsimicalis ◽  
Janet Rennick ◽  
Jennifer Stinson ◽  
Sylvie Le May ◽  
Julie Louli ◽  
...  
Keyword(s):  
Computer Software ◽  
Ease Of Use ◽  
Future Research ◽  
Communication Tool ◽  
Interactive Communication ◽  
Cancer Symptoms ◽  
French Speaking ◽  
Improvement Method ◽  
Interactive Computer Software ◽  
Purposive Sample

Objective: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. Method: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. Results: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. Conclusions: Children’s positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.

scholarly journals Assessing Apps for Patients with Genitourinary Tumors Using the Mobile Application Rating Scale (MARS): Systematic Search in App Stores and Content Analysis (Preprint)

2019 ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Roberto Collado-Borrell ◽  
Vicente Escudero-Vilaplana ◽  
Alejandra Melgarejo-Ortuño ◽  
Ana Herranz-Alonso ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Health Care ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Mobile Application ◽  
Rating Scale ◽  
Cross Sectional ◽  
Cancer Symptoms ◽  
Genitourinary Cancers

BACKGROUND The large number of available cancer apps and their impact on the population necessitates a transparent, objective, and comprehensive evaluation by app experts, health care professionals, and users. To date, there have been no analyses or classifications of apps for patients with genitourinary cancers, which are among the most prevalent types of cancer. OBJECTIVE The objective of our study was to analyze the quality of apps for patients diagnosed with genitourinary cancers using the Mobile Application Rating Scale (MARS) and identify high-quality apps. METHODS We performed an observational cross-sectional descriptive study of all smartphone apps for patients diagnosed with genitourinary cancers available on iOS and Android platforms. In July 2019, we searched for all available apps for patients with genitourinary cancers (bladder, prostate, cervical, uterine, endometrial, kidney, testicular, and vulvar) or their caregivers. Apps were downloaded and evaluated, and the general characteristics were entered into a database. The evaluation was performed by 2 independent researchers using the MARS questionnaire, which rates 23 evaluation criteria clustered in 5 domains (Engagement, Functionality, Esthetics, Information, and Subjective Quality) on a scale from 1 to 5. RESULTS In total, 46 apps were analyzed. Of these, 31 (67%) were available on Android, 6 (13%) on iOS, and 9 (20%) on both platforms. The apps were free in 89% of cases (41/46), and 61% (28/46) had been updated in the previous year. The apps were intended for prostate cancer in 30% of cases (14/46) and cervical cancer in 17% (8/46). The apps were mainly informative (63%, 29/46), preventive (24%, 11/46), and diagnostic (13%, 6/46). Only 7/46 apps (15%) were developed by health care organizations. The mean MARS score for the overall quality of the 46 apps was 2.98 (SD 0.77), with a maximum of 4.63 and a minimum of 1.95. Functionality scores were quite similar for most of the apps, with the greatest differences in Engagement and Esthetics, which showed acceptable scores in one-third of the apps. The 5 apps with the highest MARS score were the following: “Bladder cancer manager,” “Kidney cancer manager,” “My prostate cancer manager,” “Target Ovarian Cancer Symptoms Diary,” and “My Cancer Coach.” We observed statistically significant differences in the MARS score between the operating systems and the developer types (<i>P</i>&lt;.001 and <i>P</i>=.01, respectively), but not for cost (<i>P</i>=.62). CONCLUSIONS MARS is a helpful methodology to decide which apps can be prescribed to patients and to identify which features should be addressed to improve these tools. Most of the apps designed for patients with genitourinary cancers only try to provide data about the disease, without coherent interactivity. The participation of health professionals in the development of these apps is low; nevertheless, we observed that both the participation of health professionals and regular updates were correlated with quality.

Evaluation of compliance with isotretinoin PPP recommendations and exploration of reasons for non-compliance: Survey among French-speaking health care professionals and patients in Belgium

2018 ◽  
Vol 27 (6) ◽  
pp. 668-673 ◽  
Author(s):  
Mélanie Lelubre ◽  
Jamila Hamdani ◽  
Christelle Senterre ◽  
Karim Amighi ◽  
Marion Peres ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
French Speaking

scholarly journals Self-discovered breast cancer symptoms and women's help seeking behaviour: key findings from phase one of a two-phase study

2010 ◽  
pp. 133-132
Author(s):  
Mairin O’Mahony
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Health Care Professionals ◽  
Help Seeking ◽  
Western World ◽  
Two Phase ◽  
Cancer Symptoms ◽  
Common Cancer ◽  
Breast Symptom ◽  
Help Seeking Behaviour

Breast cancer is the most common cancer among women in the western world. In Ireland, breast cancer was the most common cancer diagnosed amongst women during 2000-2004 with approximately 3,095 cases reported annually and an average of 947 deaths. It is well known that the earlier the diagnosis of breast cancer is made the more likely it is that women will have a better health outcome. However, 20-30% of women wait for one month or more before presenting to a Health Care Professional with a self discovered breast symptom. This is a worrying situation given the increased emphasis on prompt presentation of symptoms and the associated link with better health care outcomes for women diagnosed with breast cancer. Therefore, more work on help-seeking behaviour from the woman’s perspective will help Health Care Professionals to understand women’s needs and concerns surrounding symptom discovery and highlight the key issues linked to delayed ...

scholarly journals Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

2019 ◽  
Author(s):  
Christina Gerlach ◽  
Kathy Taylor ◽  
Marion Ferner ◽  
Markus Munder ◽  
Martin Weber ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Health Care ◽  
Focus Groups ◽  
Cultural Adaptation ◽  
Health Care Professionals ◽  
Outcome Measure ◽  
Routine Care ◽  
Cognitive Interviews ◽  
Myeloma Patient ◽  
Forward Translation

Abstract Background Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity. Methods Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, health care professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau’s model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis. Results Cultural and linguistic differences were noted between the German and English original version. The focus groups (n = 11) and cognitive interviews (n = 9) both highlighted the need for adapting individual items and their answer options to the German health care context. Greater individuality regarding need for information with the right to not be informed was elaborated by patients. While the comprehensive nature of the tool was appreciated, item wording regarding satisfaction with health care was deemed not appropriate in the German context. For implementation into routine care, careful handling of data was addressed as a barrier, whereas the MyPOS itself was perceived as a facilitator/prompt for a patient-centred discussion of QoL issues. Conclusion With adaptations to answer options and certain items, the German version of the MyPOS can help monitor symptoms and problems afflicting myeloma patients over the course of the disease trajectory. It can help promote a model of comprehensive supportive and patient-centred care for these patients.

scholarly journals Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care

10.2196/14271 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e14271 ◽  
Author(s):  
Petra Svedberg ◽  
Susann Arvidsson ◽  
Ingrid Larsson ◽  
Ing-Marie Carlsson ◽  
Jens M Nygren
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Pediatric Care ◽  
Successful Implementation ◽  
Communication Tool ◽  
Pediatric Health Care ◽  
Children’S Participation ◽  
Ehealth Services ◽  
Children's Participation ◽  
Insight Into

Background Children’s participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. Objective The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals’ perspectives. Methods A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. Results To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children’s participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals’ beliefs in the usefulness and usability of the solution, and health care professionals’ willingness to change their professional roles guided by the solution. Conclusions The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children’s participation.

Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology

2021 ◽  
pp. OP.20.01038
Author(s):  
Bryan A. Sisk ◽  
Jessica A. Zavadil ◽  
Lindsay J. Blazin ◽  
Justin N. Baker ◽  
Jennifer W. Mack ◽  
...  
Keyword(s):  
Health Care ◽  
Pediatric Oncology ◽  
Health Care Professionals ◽  
Semantic Content ◽  
Parental Engagement ◽  
Negative Consequences ◽  
Self Confidence ◽  
Parents And Children ◽  
Negative Communication ◽  
Communication Breakdowns

PURPOSE: Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns. METHODS: Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis. RESULTS: Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance. CONCLUSION: Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.

scholarly journals Korean Translation and Linguistic Validation of Urgency and Overactive Bladder Questionnaires

2020 ◽  
Vol 24 (1) ◽  
pp. 66-76 ◽  
Author(s):  
Seung-Ee Kim ◽  
Hyo Serk Lee ◽  
Ha Na Lee ◽  
Seo Yeon Lee ◽  
Min Soo Choo ◽  
...  
Keyword(s):  
Overactive Bladder ◽  
Ordinary Language ◽  
Cognitive Debriefing ◽  
Severity Scale ◽  
Translation Process ◽  
Linguistic Validation ◽  
Korean Patients ◽  
Forward Translation ◽  
Back Translation ◽  
Validation Procedure

Purpose: Given the importance of evaluating the severity of overactive bladder (OAB) symptoms and outcomes after treatment, several questionnaires have been developed to evaluate OAB patients. However, only limited questionnaires are available in Korea for use with Korean patients. Therefore, this study aimed to develop Korean versions of OAB questionnaires through a rigorous linguistic validation process.Methods: The Indevus Urgency Severity Scale, Urgency Perception Scale, Urgency Severity Scale, and Patient Perception of Intensity of Urgency Scale underwent translation and linguistic validation. The linguistic validation procedure consisted of permission for translation, forward translations, reconciliation, back-translation, cognitive debriefing, and proofreading. Two independent bilingual translators translated the original version of each questionnaire, and a panel then discussed and reconciled the 2 initial translations. Next, a third independent bilingual translator performed a backward translation of the reconciled version into English. Five Korean patients diagnosed with OAB were interviewed for cognitive debriefing.Results: Each item of the questionnaires was translated into 2 Korean versions in the forward translation process. Terms such as ‘urgency’ and ‘wetting’ were translated into ordinary language by the translators and adjusted by the panel members to more conceptually equivalent terms in a medical context. In the back-translation process, the panel made a few changes regarding details based on a comparison of the back-translated and original versions. During the cognitive debriefing process, 5 patients provided a few pieces of feedback on the naturalness of the wording of the questionnaires, but generally agreed on the translated terms.Conclusions: In this study, the panel produced a successful linguistic validation of Korean versions of multiple OAB questionnaires, which can be utilized to evaluate the severity and treatment outcomes of OAB.

scholarly journals Identifying Gaps in Metastatic Breast Cancer Patient Knowledge and Their Communication Experiences With Health Care Professionals and Developing Visually Based Solutions to Overcome Those Gaps

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 108s-108s
Author(s):  
C. Ellsworth Beaumont ◽  
C. Benjamin
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Health Care Professionals ◽  
Treatment Options ◽  
Metastatic Breast ◽  
International Agency ◽  
Communication Tool ◽  
Low Literacy ◽  
Visually Based

Background: Metastatic breast cancer (MBC) is the fifth most common cause of death from cancer globally.1 MBC is incurable and its trajectory complicated. Patients have only a few days to choose treatments after an unexpected diagnosis, and most conversations with health care professionals (HCPs) are oral, a communication method with low retention accuracy (14%).2 Patients and caregivers feel ill prepared and overwhelmed. Yet when visuals are introduced into HCP/patient communication, accurate recall can be as high as 85% for low-literacy populations.2 Aim: Test if visually based communication tools can be used by HCPs to increase MBC patient and caregiver understanding of MBC as incurable, and confidence in making treatment decisions for quality of life. Methods: Survey of MBC patients (n=487) communication experience prior to treatment of Stage IV; interviews with HCPs (n=20) in the clinic to identify communication barriers with patients; empathy role play with HCPs and patients to clarify viewpoints (n=7); analysis of patient materials; in-depth interviews with MBC patients and communication experts (n=12); iterative design process of communication tool prototype with MBC patient group (n=48) and HCPs. Results: Only 1 in 8 patients were educated with visuals during initial discussions with HCPs. Less than half of patients (46%) included HER2 and hormone receptor status when asked to describe their subtype. One-third of patients felt they did not have enough knowledge to participate in decision-making for treatment and 58% of patients felt rushed to start; 71% did not recall discussing goals/hobbies; and just 62% discussed pain and symptom management. HCPs want to deliver difficult news in a clear and empathetic way, reduce repetition, save time educating patients, and have better tools for caregivers; current patient materials are impersonal and overwhelming. Iterative development and testing of the MBC Communication Toolkit prototype with HCPs and patients showed patients understood treatment options more easily with a visual metaphor while HCPs using the prototype said the images were effective for communicating symptoms and treatment options. Conclusion: A visual approach to improving communication between MBC patients and caregivers and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback. Visual tools can help HCPs engage patients with information to enable them to understand their disease, goals, and nature of treatments so they can make informed, appropriate decisions. REFERENCES 1. International Agency for Research on Cancer: Breast cancer: estimated incidence, mortality and prevalence worldwide in 2012. Available at https://globocan.iarc.fr/Pages/fact-sheets_cancer.aspx 2. Houts PS, Witmer JT, Egeth HE, et al: Using pictographs to enhance recall of spoken medical instructions II. Patient Educ Couns 43:231-242, 2001 https://doi.org/10.1016/S0738-3991(00)00171-3

Adaptations to the Serious Illness Conversation Guide to Be More Culturally Safe

2020 ◽  
Vol 16 (1) ◽  
Author(s):  
Elizabeth Beddard-Huber ◽  
Gina Gaspard ◽  
Kathleen Yue
Keyword(s):  
Health Care ◽  
British Columbia ◽  
First Nations ◽  
Indigenous Peoples ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Care Providers ◽  
Communication Tool ◽  
Clinical Tool ◽  
Serious Illness

The Serious Illness Conversation Guide (SICG) has been shown to be an effective communication tool used by health care professionals when interacting with patients facing a life-limiting illness. However, Ariadne Labs, the originators of the tool, have not tested it with First Nations and Indigenous Peoples. In this project, the British Columbia Centre for Palliative Care and the First Nations Health Authority in British Columbia (BC), Canada collaborated to adapt the SICG to be more culturally safe for First Nations and Indigenous Peoples. Multiple feedback strategies were employed. Feedback was received from 35 older adults, Elders, and community members from two First Nations communities plus approximately 80 nurses serving in First Nations communities across BC. Key areas of focus for feedback on the clinical tool included setting up the conversation, involving family, closing the conversation, and using principles of health literacy to reduce power differences. Three questions were added in response to feedback received. By creating a safe space for dialogue, it is hoped that health care providers and family members will develop a deeper understanding of what is important to the person with a life-limiting illness. These conversations promote patient-centred health care that aligns with patient values and wishes. Findings from this project directly informed modification of the tool to support a more culturally safe conversation. Further research will inform whether this tool is culturally safe for all seriously ill people.

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