scholarly journals Developing a Web-Based Comic for Newly Diagnosed Women With Breast Cancer: An Action Research Approach (Preprint)

2018 ◽  
Author(s):  
Tzu-I Lee ◽  
Shuh-Jen Sheu ◽  
Hsueh-Chin Chang ◽  
Yu-Ting Hung ◽  
Ling-Ming Tseng ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Action Research ◽  
Cancer Treatment ◽  
Diagnostic Process ◽  
Research Approach ◽  
Newly Diagnosed ◽  
Web Based ◽  
Action Research Approach ◽  
The Web

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.

scholarly journals Developing a web-based shared decision-making tool for fertility preservation among reproductive-age women with breast cancer: An action research approach (Preprint)

2020 ◽  
Author(s):  
Ling-Ming Tseng ◽  
Pei-Ju Lien ◽  
Chen-Yu Huang ◽  
Yi-Fang Tsai ◽  
Ta-Chung Chao ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Action Research ◽  
Fertility Preservation ◽  
Reproductive Age ◽  
Research Approach ◽  
Shared Decision ◽  
Web Based ◽  
Action Research Approach ◽  
The Web

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

scholarly journals Developing a Web-Based Comic for Newly Diagnosed Women With Breast Cancer: An Action Research Approach

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 ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Action Research ◽  
Research Approach ◽  
Newly Diagnosed ◽  
Web Based ◽  
Action Research Approach

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

2018 ◽  
Author(s):  
Yu-Ting Hung ◽  
Ching-Fang Wu ◽  
Te-Hsin Liang ◽  
Shin-Shang Chou ◽  
Guan-Liang Chen ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Action Research ◽  
Cancer Patients ◽  
Medical Information ◽  
Cancer Surgery ◽  
Breast Cancer Surgery ◽  
Research Approach ◽  
Breast Cancer Patients ◽  
Action Research Approach

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.

scholarly journals Developing a Web-Based Shared Decision-Making Tool for Fertility Preservation Among Reproductive-Age Women With Breast Cancer: An Action Research Approach

10.2196/24926 ◽  
2021 ◽  
Vol 23 (3) ◽  
pp. e24926
Author(s):  
Ling-Ming Tseng ◽  
Pei-Ju Lien ◽  
Chen-Yu Huang ◽  
Yi-Fang Tsai ◽  
Ta-Chung Chao ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Action Research ◽  
Fertility Preservation ◽  
Shared Decision Making ◽  
Reproductive Age ◽  
Research Approach ◽  
Shared Decision ◽  
Web Based ◽  
Decision Making Tool

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 a 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 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 shared decision-making 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’s shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale. Results Five major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients’ and health providers’ needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation. Conclusions We have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians. Trial Registration Clinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910

scholarly journals Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach (Preprint)

2017 ◽  
Author(s):  
Anna Wikman ◽  
Laura Kukkola ◽  
Helene Börjesson ◽  
Martin Cernvall ◽  
Joanne Woodford ◽  
...  
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
Behavior Therapy ◽  
Cognitive Behavior Therapy ◽  
Research Approach ◽  
Cognitive Behavior ◽  
Participatory Action ◽  
Web Based ◽  
Action Research Approach ◽  
Previously Treated

BACKGROUND Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child’s cancer disease after end of treatment. OBJECTIVE One aim of this study was to develop an internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. METHODS Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. RESULTS A 10-week, internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. CONCLUSIONS To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population.

Primary care provider-reported participation in breast cancer treatment decision making.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 78-78
Author(s):  
Lauren P. Wallner ◽  
Yun Li ◽  
Chandler McLeod ◽  
Archana Radhakrishnan ◽  
Sarah T. Hawley ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cancer Treatment ◽  
Cancer Patients ◽  
Early Stage ◽  
Treatment Decision ◽  
Breast Cancer Treatment ◽  
Newly Diagnosed ◽  
Breast Cancer Patients ◽  
Treatment Decision Making

78 Background: Surgical treatment decisions for early-stage breast cancer patients are complex and often involve discussions with multiple oncology providers. However, with the increasing adoption of team-based cancer care models, it remains unknown to what extent primary care providers (PCPs) are participating in breast cancer treatment decisions and whether they feel they have enough knowledge to participate in these decisions effectively. Methods: A stratified random sample of PCPs identified by newly diagnosed early-stage breast cancer patients who participated in iCanCare Study (Georgia and Los Angeles SEER registries) were surveyed about their experiences caring for cancer patients (N = 519, 58% current response rate). PCPs were asked how frequently they discussed which surgery a patient should have, how comfortable they were with these discussions, whether they had the necessary knowledge to participate in treatment decision making and their confidence in their ability to help with treatment decision making (5-item likert-type scales). The individual items were then categorized as somewhat/often/always vs. never/rarely for analyses. Results: In this preliminary sample, 62% of PCPs were not comfortable having a discussion about surgery options with a patient newly diagnosed with breast cancer, 41% did not feel that they had the necessary knowledge to participate in treatment decision-making, and 34% were not confident in the ability to help with treatment decision-making. One third (32%) of PCPs reported discussing surgical treatment options with their newly diagnosed breast cancer patients, but 22% of these PCPs also reported that they were not comfortable having these discussions and 16% reported they did not have necessary knowledge to participate in decision-making. Conclusions: A minority of PCPs participate in breast cancer treatment decision-making and there are notable gaps in their self-reported knowledge about decision-making and confidence in their ability to help with these decisions. Efforts to increase PCP knowledge about the specifics of cancer treatments may be warranted, but further research is needed to assess the impact of PCP participation on treatment decision-making outcomes.

Decision-making when organising facilities for a school: a participatory action research approach

Facilities ◽  
2020 ◽  
Vol 38 (13/14) ◽  
pp. 913-926 ◽  
Author(s):  
Ulrika Uotila ◽  
Arto Saari ◽  
Juha-Matti Junnonen
Keyword(s):  
Decision Making ◽  
Action Research ◽  
Project Planning ◽  
Research Approach ◽  
Final Decision ◽  
Public Authorities ◽  
Content Type ◽  
Action Research Approach ◽  
Alternative Solutions

Purpose Public authorities are required to organise new facilities to respond to changed user demands in terms of a public-owned school. The number of pupils attending the case study school will increase in the following years, as will the number of children attending a day nursery located on the present campus. In addition, the users of the campus have complained of building-related symptoms. This study aims to understand the municipal decision-making process in organising the school’s facilities, in particular, the factors used for decreasing uncertainty around a project. Design/methodology/approach This study is a case study undertaken through an action research approach. The researchers participated in the project planning meetings concerning the future activities to take place in the building. Findings Over a 13-month period, multiple stakeholders participated in the project planning meetings providing a deeper understanding of the space demands posed, current challenges and opportunities offered by the existing building. In addition, the alternative solutions generated were evaluated. The problem identification and information gathering periods lasted over nine months, which was far longer than predicted. Thus, generating alternative solutions and evaluation of the solutions also delayed. As the entire process was delayed substantially, the final decision on organising the facilities was not made during this research. Practical implications This research may be of practical value for a property owner and a project team for decision-making concerning changed facility demands. Originality/value This paper provides information about how public authorities are making decisions on facility organisation during conditions of uncertainty.

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 ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Action Research ◽  
Decision Aid ◽  
Cancer Surgery ◽  
Breast Cancer Surgery ◽  
Research Approach ◽  
Action Research Approach
Sign in / Sign up

Export Citation Format

Share Document