scholarly journals Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach

10.2196/10404 ◽  
2019 ◽  
Vol 21 (2) ◽  
pp. e10404 ◽  
Author(s):  
Yu-Ting Hung ◽  
Ching-Fang Wu ◽  
Te-Hsin Liang ◽  
Shin-Shang Chou ◽  
Guan-Liang Chen ◽  
...  
2018 ◽  
Author(s):  
Yu-Ting Hung ◽  
Ching-Fang Wu ◽  
Te-Hsin Liang ◽  
Shin-Shang Chou ◽  
Guan-Liang Chen ◽  
...  

BACKGROUND Patients with early-stage breast cancer have numerous options when choosing the type of breast surgery method to be applied. Each of these options lead to a similar long-term survival rate, but result in significant differences in appearance, function, cost, recurrence rate, and various other relevant considerations. However, the time available for detailed communication with each patient is often limited in clinics, which puts these women under great psychological stress and can hinder their surgery-related decision making. OBJECTIVE The objective of this study was to develop a multipurpose surgery decision-making website providing medical information, psychological support, and decision-related simulation for women during breast cancer surgery-related decision making. METHODS Using the 4 steps of action research, which involve multigroup teamwork via regular team meetings, the following were performed: (1) Planning: searching, analyzing, and evaluating health websites to consensually decide the major infrastructure; (2) Action: work was performed simultaneously in 4 groups, which consisted of medical information collection and editing, patient interviews and data extraction, webpage content design, and programming to create or host the website; (3) Evaluation: the website was tested by clinical experts and focus groups of former breast cancer patients to assess its effectiveness and pinpoint appropriate improvements; and (4) Reflection: constant dialogue was conducted between the various participants at each step, which was used as the foundation and motivation of next plan-action-evaluation-reflection circle. RESULTS Using the action research approach, we completed the development of our website, which includes the following: (1) “Woman’s Voice”—an animated comic depicting the story of a female breast cancer patient with interspersed questions for the users that will help them better empathize with the experience; (2) “Cancer Information Treasure House”—providing breast cancer surgery-related information through text, tables, pictures and a presentation video; (3) “Decision-making Simulator”—helping patients think through and check the pros and cons of the different surgical options via visual-based interactions including “Stairs Climbing” and “Fruit of Hope”; and (4) “Recommended Links”—providing reliable websites for further reference. Additionally, we have further improved the website based on the feedback received from postsurgery breast cancer patients and clinicians. We hope to continue improving to better meet both the patients’ and health providers’ needs and become a practical decision-making aid for patients undergoing breast cancer surgery. CONCLUSIONS We have created the first breast cancer surgery decision-making assistance tool in Taiwan using a “Web-based” and multifunctional website design. This site aims to provide health care knowledge, psychological healing, and emotional support functions, as well as decision-making capability enhancement simulations. We look forward to assisting breast cancer patients in their decision-making process and expect our website to increase patient’s autonomy and improve their communication with clinicians.


2018 ◽  
Author(s):  
Tzu-I Lee ◽  
Shuh-Jen Sheu ◽  
Hsueh-Chin Chang ◽  
Yu-Ting Hung ◽  
Ling-Ming Tseng ◽  
...  

BACKGROUND Personal narratives have been seen as a useful way of communicating about cancer treatment options and providing recovery information. Many printed versions of such material are available, including comics that explore the individual memories of patients who have gone through cancer treatment. These studies have been used to orientate patients, patients’ relatives, and physicians. However, only a few Web-based comics have been specifically designed for patients with breast cancer and used as aids to decision making. OBJECTIVE We aimed to describe the developmental process of creating an animated comic as a Web-based surgery decision-making tool; the comic was aimed at illustrating the feelings, thoughts, and meanings when a patient suffers from breast cancer. This was done by recounting the symptoms, diagnostic process, treatments, and treatment effects of such women from the diagnosis stage onward. METHODS Using cycles of planning, action, evaluation, and reflection, which involved collaborative work, action research was conducted to develop a Web-based animated comic. The stages of action research consisted of (1) semistructured and in-depth interviews to collect experiences of women with breast cancer; (2) construction of an animated comic by editors, graphics designers, dubbers, and information technology engineers; (3) redrawing of pictures of the comic after gathering feedback from a breast surgeon; and (4) evaluation of the Web-based animated comic using 6 patient focus groups. RESULTS The comic was produced and showcased on the website “The Network of Making-decision Aids for Breast Cancer Surgery”; the comic was accompanied by soft music and audio explanations. The comic functions as a personal statement that describes experiencing breast cancer. The animated comic consists of 8 chapters, based on the 8 themes deducted from the findings obtained during the analysis of relevant interviews. The 8 chapters include (1) the appearance of a lump; (2) confirmation by medical diagnosis; (3) the uncertainty of waiting (4) fear of life-threatening disease; (5) choosing life over despair; (6) being brave and deciding to undergo treatment; (7) choosing the type of surgery; and (8) being reborn. CONCLUSIONS Using action research, this study illustrated that the comic that sheds light on issues of feelings, emotions, and thoughts that are present when a woman is diagnosed with breast cancer and provides a communication medium to explain the steps in the process. Meanwhile, it implies that hope will be able to overcome the challenges that will be faced. Within the Web-based decision aid for patients with breast cancer, the animated comic acts as an information resource and is aimed at patients’ understanding of impacts of emotions arising when suffering from breast cancer. It is potentially applicable as a therapeutic tool that facilitates self-reflection and self-healing among newly diagnosed patients with breast cancer.


2020 ◽  
Author(s):  
Ling-Ming Tseng ◽  
Pei-Ju Lien ◽  
Chen-Yu Huang ◽  
Yi-Fang Tsai ◽  
Ta-Chung Chao ◽  
...  

BACKGROUND The pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive- age patients with breast cancer have safe options when choosing the type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed. OBJECTIVE The objective of this study was to develop a web-based, shared decision-making (SDM) tool for helping patients with breast cancer make decisions on fertility preservation. METHODS We used the action research cycle of observing, reflecting, planning, and acting to develop a web-based SDM tool. The following four phrases were applied: (1) Observe and reflect: Collect and analyze the decision-making experiences of patients and health care providers; (2) Reflect and plan: Apply the initial results to create a paper design and modify the content; (3) Plan and act: Brainstorm about the web pages, and modify the content; (4) Act and observe: Evaluate the effectiveness, and refine the website SDM. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. The effectiveness was evaluated using the Preparation for Decision-Making (prepDM) scale. RESULTS Five major parts were developed with the use of the action research approach. The Introduction and Options (parts 1 and 2) describe the severity of the cancer treatment and infertility and the knowledge of fertility preservation, respectively. The SDM tool was designed as a step by step process (part 3) that involves the comparison of options, patient’s values and preferences, their knowledge regarding infertility and options, and reaching a collective decision. The Resources (part 4) provide information on the hospitals that provide such services, and the References (part 5) list all the literature cited in the website. The results show the web-based SDM meets both the patients’ and health providers’ needs and helps reproductive-age patients with breast cancer make decisions on fertility preservation. CONCLUSIONS We have created the first web-based SDM tool for making fertility preservation decisions in Taiwan. All female patients of reproductive age with breast cancer are expected to use the tool, which should increase patient autonomy and improve communication about fertility preservation with clinicians. CLINICALTRIAL NCT04602910


JAMA ◽  
2004 ◽  
Vol 292 (4) ◽  
pp. 435 ◽  
Author(s):  
Timothy Whelan ◽  
Mark Levine ◽  
Andrew Willan ◽  
Amiram Gafni ◽  
Ken Sanders ◽  
...  

10.2196/10716 ◽  
2019 ◽  
Vol 21 (2) ◽  
pp. e10716 ◽  
Author(s):  
Tzu-I Lee ◽  
Shuh-Jen Sheu ◽  
Hsueh-Chin Chang ◽  
Yu-Ting Hung ◽  
Ling-Ming Tseng ◽  
...  

2011 ◽  
Vol 14 (4) ◽  
pp. 405-416 ◽  
Author(s):  
Angel H.Y. Au ◽  
Wendy W.T. Lam ◽  
Miranda C.M. Chan ◽  
Amy Y.M. Or ◽  
Ava Kwong ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document