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1.
JMIR Hum Factors ; 11: e51522, 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38564261

ABSTRACT

BACKGROUND: More than 18 million cancer survivors are living in the United States. The effects of cancer and its treatments can have cognitive, psychological, physical, and social consequences that many survivors find incredibly disabling. Posttreatment support is often unavailable or underused, especially for survivors living with disabilities. This leaves them to deal with new obstacles and struggles on their own, oftentimes feeling lost during this transition. Mobile health (mHealth) interventions have been shown to effectively aid cancer survivors in dealing with many of the aftereffects of cancer and its treatments; these interventions hold immense potential for survivors living with disabilities. We developed a prototype for WeCanManage, an mHealth-delivered self-management intervention to empower cancer survivors living with disabilities through problem-solving, mindfulness, and self-advocacy training. OBJECTIVE: Our study conducted a heuristic evaluation of the WeCanManage high-fidelity prototype and assessed its usability among cancer survivors with known disabilities. METHODS: We evaluated the prototype using Nielsen's 10 principles of heuristic evaluation with 22 human-computer interaction university students. On the basis of the heuristic evaluation findings, we modified the prototype and conducted usability testing on 10 cancer survivors with a variety of known disabilities, examining effectiveness, efficiency, usability, and satisfaction, including a completion of the modified System Usability Scale (SUS). RESULTS: The findings from the heuristic evaluation were mostly favorable, highlighting the need for a help guide, addressing accessibility concerns, and enhancing the navigation experience. After usability testing, the average SUS score was 81, indicating a good-excellent design. The participants in the usability testing sample expressed positive reactions toward the app's design, educational content and videos, and the available means of connecting with others. They identified areas for improvement, such as improving accessibility, simplifying navigation within the community forums, and providing a more convenient method to access the help guide. CONCLUSIONS: Overall, usability testing showed positive results for the design of WeCanManage. The course content and features helped participants feel heard, understood, and less alone.


Subject(s)
Cancer Survivors , Mobile Applications , Neoplasms , Humans , User-Centered Design , Heuristics , User-Computer Interface , Power, Psychological , Neoplasms/therapy
2.
Occup Ther Health Care ; 38(2): 347-363, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37302410

ABSTRACT

Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.


Subject(s)
Cancer Survivors , Neoplasms , Occupational Therapy , Humans , Activities of Daily Living , Canada
3.
JMIR Form Res ; 6(7): e37706, 2022 Jul 26.
Article in English | MEDLINE | ID: mdl-35881439

ABSTRACT

BACKGROUND: The transition from active treatment to long-term cancer survivorship leaves the needs of many cancer survivors unaddressed as they struggle with physical, cognitive, psychological, and social consequences of cancer and its treatment. The lack of guidance after treatment has forced cancer survivors to manage long-term effects on their own, which has an impact on their overall health, quality of life, and social participation. Mobile health (mHealth) interventions can be used to promote self-management and evidence-informed education. OBJECTIVE: This study aims to design an mHealth app for cancer survivors with disabilities that will offer interventions to improve their quality of life and increase their self-efficacy to manage cancer as a chronic condition. METHODS: We organized 3 co-design workshops with cancer survivors (n=5). These workshops included persona development based on data from 25 interviews with cancer survivors with disabilities; prototype ideation, where we sketched ideas for the prototype; and prototype development, where participants critiqued, and suggested improvements for, the wireframes. RESULTS: These workshops helped us to define the challenges that cancer survivors with disabilities face as well as important considerations when designing an mHealth app for cancer survivors with disabilities, such as the need for including flexibility, engagement, socialization, and a minimalistic design. We also outline guidelines for other researchers to follow when planning their own co-design workshops, which include allowing more time for discussion among participants, having small participant groups, keeping workshops engaging and inclusive, and letting participants dream big. CONCLUSIONS: Using a co-design process aided us in developing a prototype of an mHealth app for cancer survivors with disabilities as well as a list of guidelines that other researchers can use to develop their own co-design workshops and design their app. Furthermore, working together with cancer survivors ensured that the design team had a deeper sense of empathy toward the target users and kept the focus on our ultimate goal: creating something that cancer survivors would want to use and benefit from. Future work will include usability testing of a high-fidelity prototype based on the results of these workshops.

4.
Transl Behav Med ; 9(4): 638-645, 2019 07 16.
Article in English | MEDLINE | ID: mdl-29986120

ABSTRACT

Hispanic breast cancer survivors (BCS) are at high risk for experiencing poor health-related quality of life (HRQoL) after completion of active breast cancer treatment. Therefore, there is a need to develop culturally tailored interventions for Hispanic BCS. To date, there have been limited interventions that have demonstrated that increasing cancer-related knowledge, self-efficacy in communication, and self-management skills can improve HRQoL among Hispanic BCS. These interventions have been delivered in person or by phone, which may be burdensome for Hispanic BCS. To facilitate intervention delivery, we developed My Guide, a Smartphone application aimed at improving HRQoL among Hispanic BCS. The purpose of the current study is to describe the feasibility results of a 4-week pilot trial testing My Guide among Hispanic BCS. Twenty-five women enrolled in the study (75% recruitment rate) and 22 women were retained (91.6% retention rate). Mean time spent using My Guide across the 4 weeks was 9.25 hr, and mean score on the satisfaction survey was 65.91 (range 42-70), in which higher scores reflect greater satisfaction. Participants' scores on the Breast Cancer Knowledge Questionnaire significantly improved from study baseline (M = 9.50, SD = 2.92) to the postintervention assessment (M = 11.14, SD = 2.66), d = 0.59. Participants' HRQoL scores improved over the course of 4 weeks, but these improvements were not statistically significant. Overall, My Guide was feasible and acceptable. Future studies will assess the preliminary efficacy of My Guide in improving HRQoL in a larger, randomized trial of Hispanic BCS.


Subject(s)
Breast Neoplasms/ethnology , Breast Neoplasms/therapy , Cancer Survivors/psychology , Hispanic or Latino/psychology , Smartphone/instrumentation , Breast Neoplasms/mortality , Feasibility Studies , Female , Humans , Middle Aged , Mobile Applications/supply & distribution , Pilot Projects , Quality of Life , Self Efficacy , Self-Management/education , Self-Management/psychology , Surveys and Questionnaires , Telephone/instrumentation , Telephone/statistics & numerical data
5.
Design Health (Abingdon) ; 2(1): 58-76, 2018.
Article in English | MEDLINE | ID: mdl-30506017

ABSTRACT

Latina breast cancer patients in the USA report significantly worse cancer-related symptom burden and health-related quality of life than non-Hispanic whites. However, health literacy (e.g. knowledge about cancer, coping skills and communication) has been found to improve quality of life. In this paper, we present a case study of the methodology used to design Mi Guía (My Guide), a mobile application that aims to improve symptom burden and health-related quality of life among Hispanic women who have completed active treatment for breast cancer by increasing their health literacy. We developed a community-supported approach to building the application, which involved: (1) eliciting feedback from community leaders such as support group organizers and facilitators who are bilingual in Spanish and English, prioritize patients' preferences and best interests and have a unique knowledge of the women and their needs;(2) conducting a formal evaluation of design principles based on previous interaction design research and user responses;(3) incorporating feedback from potential future users. In this paper, we discuss our methodology, and the challenges and benefits of this approach. We believe that future studies that aim to develop mobile technologies for underserved populations may benefit from a community-supported approach to design.

6.
Contemp Clin Trials ; 65: 61-68, 2018 02.
Article in English | MEDLINE | ID: mdl-29198729

ABSTRACT

Breast cancer is the most commonly diagnosed non-skin cancer in women and the leading cause of death among Hispanic women living in the United States. Relative to non-Hispanic white women, Hispanic women report poorer health related quality of life (HRQoL) after treatment. Although eHealth interventions delivered via Smartphones are a viable approach to addressing supportive care accessibility issues while also integrating multidisciplinary approaches for improving HRQoL, few eHealth interventions have been developed that specifically target Hispanic breast cancer survivors (BCS). This manuscript describes the methodology of a multi-site, randomized controlled behavioral trial investigating the feasibility and preliminary efficacy of a Smartphone application aimed at improving HRQoL and cancer-specific distress among Hispanic BCS. Participants will be randomized to receive the intervention application, My Guide (psychoeducation & self-management program), or the health education control condition application, My Health (health education), for six weeks. All participants will also receive weekly telecoaching to enhance adherence to both control and intervention conditions. We will measure the study's primary outcomes, general and disease-specific HRQoL and cancer-specific distress, at three time points: prior to, immediately after the intervention, and eight weeks after initial application use. My Guide may have the potential to improve HRQoL, and to address issues of limited access to supportive care among Hispanic women recovering from breast cancer treatment.


Subject(s)
Breast Neoplasms/psychology , Cancer Survivors/psychology , Health Promotion/methods , Hispanic or Latino/psychology , Mobile Applications , Quality of Life/psychology , Breast Neoplasms/ethnology , Female , Gender Identity , Health Education/methods , Humans , Mentors , Patient Satisfaction , Research Design , Self Efficacy , Smartphone , Social Support , Socioeconomic Factors , Stress, Psychological/ethnology , Stress, Psychological/psychology , Telemedicine , Telephone , United States
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