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 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 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.

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 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

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 The process of transprofessional collaboration: how caregivers integrated the perspectives of rehabilitation through working with a physical therapist

2020 ◽  
Vol 8 (4) ◽  
pp. e000378
Author(s):  
Ryohei Goto ◽  
Junji Haruta
Keyword(s):  
Nursing Home ◽  
Action Research ◽  
Physical Therapist ◽  
Nursing Home Residents ◽  
Research Approach ◽  
Action Research Approach ◽  
Informal Interview ◽  
Trial Basis ◽  
Field Notes

ObjectivesTo clarify the process of how caregivers in a nursing home integrate the perspectives of rehabilitation into their responsibilities through working with a physical therapist.DesignThis study was conducted under an action research approach.SettingThe target facility was a nursing home located in Japan. The researcher, a physical therapist, worked at the nursing home once a week from April 2016 to March 2017. During the study period, he created field notes focused on the dialogue and action of caregivers regarding care, responses of caregivers to the physical therapist and reflections as a physical therapist. Caregivers were also given a short informal interview about their relationship with the nursing home residents. For data analysis, two researchers discussed the content based on the field notes, consolidating the findings.ParticipantsThe participants were caregivers who worked at the target facility. Thirty-eight caregivers agreed to participate. Average age was 39.6±11.1 years, 14 (37%) were male and average caregiver experience was 9.8 years.ResultsTwo cycles of action research were conducted during the study period. There were four stages in the process of how caregivers in the nursing home integrated the perspectives of rehabilitation through their work with the physical therapist. First, caregivers resisted having the rehabilitation programme carried out in the unit because they perceived that rehabilitation performed by a physical therapist was a special process and not under their responsibility. However, the caregivers were given a shared perspective on rehabilitation by the physical therapist, which helped them to understand the meaning of care to adapt the residents’ abilities to their daily life. They practised resident-centred care on a trial basis, although with a sense of conflict between their new and previous role, which emphasised the safety of residents’ lives and personhood. The caregivers increased their self-efficacy as their knowledge and skills were supplemented by the physical therapist and his approval of their attempted care. They were then able to commit to their newly conceived specialty of care as a means of supporting the lives of residents.ConclusionsThe process of working with a physical therapist led to a change in caregivers’ perception and behaviours, which occurred in four stages: resistance to incorporation, recapture of other perspectives, conflicts and trials in the role of caregiver and transformation to a resident-centred perspective.

scholarly journals Use of participatory action research approach to develop a self-management resource for persons living with dementia

Dementia ◽  
2021 ◽  
pp. 147130122199728
Author(s):  
Sherry Dupuis ◽  
Carrie McAiney ◽  
Lisa Loiselle ◽  
Brenda Hounam ◽  
Jim Mann ◽  
...  
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
Primary Care Providers ◽  
Self Management ◽  
Research Approach ◽  
Care Providers ◽  
Participatory Action ◽  
Action Research Approach ◽  
Care Partners ◽  
Essential Components

This article describes the use of a participatory action research (PAR) approach to developing a self-management resource for persons living with dementia and care partners. Despite growing evidence that persons with dementia are able to contribute in meaningful ways to decision-making about their care and life preferences, few opportunities exist for them to participate in the design of resources and services meant for them. There is also a need to support the self-management of persons living with dementia with the provision of accurate, high quality, user-friendly information. The Living Well with Dementia resource was developed through a partnership with persons with dementia, family members, Alzheimer Society representatives, primary care providers, and researchers. The methods used in the development of this resource are outlined in six steps employed in this process, from establishment of a PAR team to final resource creation. Informed by a whole systems approach, the resource brings together essential components of self-management into a comprehensive system of care and support for living. It empowers users to be active participants in the application of new knowledge to their lives. Better self-management has important implications for access to health care and quality of life for persons with dementia and care partners.

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