Mobile Breast Cancer e-Support Program for Chinese Women With Breast Cancer Undergoing Chemotherapy (Part 1): Qualitative Study of Women’s Perceptions

Background: Women with breast cancer undergoing chemotherapy experience difficulty in accessing adequate cancer care in China. Mobile apps have the potential to provide easily accessible support for these women. However, there remains a paucity of randomized controlled trials to evaluate the effectiveness of app-based programs targeting specifically women with breast cancer undergoing chemotherapy. Moreover, women’s perceptions and experiences related to using and interacting within the app-based program have rarely been reported. Therefore, an app-based Breast Cancer e-Support program was developed and evaluated using a randomized controlled trial. Based on the incorporation of Bandura’s self-efficacy and social exchange theory, Breast Cancer e-Support program lasted for 12 weeks covering 4 cycles of chemotherapy and had 4 components: (1) a Learning forum, (2) a Discussion forum, (3) an Ask-the-Expert forum, and (4) a Personal Stories forum. Objective: As a part of the randomized controlled trial, the aim of this study was to explore the participants’ perception of Breast Cancer e-Support program, its strengths and weaknesses, and suggestions to improve the program. Methods: A descriptive qualitative study was employed. Thirteen women with breast cancer from 2 university-affiliated hospitals in China, who were randomly allocated to the Breast Cancer e-Support program in the randomized controlled trial, were interviewed from November 2016 to February 2017. Purposive sampling was used based on women’s scores of self-efficacy after the completion of the intervention. Inductive content analysis was used to analyze the transcripts, allowing the categories and subcategories to flow from the data. Results: The qualitative interviews revealed that participants perceived the Breast Cancer e-Support program to be helpful in enhancing knowledge, improving confidence level, and promoting emotional well-being. Women also identified access to tailored advice from experts and convenience as the benefits of this program. Physical or psychological health status, stigma related with breast cancer, and app instability were mentioned as the challenges to engagement. Suggestions for improvement included adding message reminders to prompt instant communication and search engine to locate information quickly, supplementing more interesting and practical knowledge, updating the information more often, and quickening the responses to women’s questions. The participants recommended the Breast Cancer e-Support program to be incorporated as routine care to support women during chemotherapy. JMIR Mhealth Uhealth 2018 | vol. 6 | iss. 4 | e85 | p. 1 http://mhealth.jmir.org/2018/4/e85/ (page number not for citation purposes) Zhu et al JMIR MHEALTH AND UHEALTH


Introduction
Breast cancer is the most commonly diagnosed cancer for Chinese women [1], and chemotherapy is widely used to treat breast cancer [2]. Women with breast cancer receiving chemotherapy experience difficulty accessing adequate cancer care in China because of the shortage of oncology-trained health care professionals (HCPs) [3,4], and the increasing incidence of breast cancer [5]. In recent years, China's Ministry of Health has developed a national plan aiming to provide easily accessible and affordable health service to prevent and control cancer [6]. Mobile apps offer one means in this endeavor to support patients [7].
It is widely recognized that the use of chemotherapy causes a variety of side effects such as nausea, insomnia, and pain, which adversely affect women's psychological well-being and quality of life (QoL) [8,9]. Effective symptom management is thus crucial, and a sense of self-efficacy and social support are needed for women to initiate and maintain appropriate symptom management strategies [10]. Furthermore, the majority of women receiving chemotherapy for breast cancer are treated in the out-patient setting and have to manage most symptoms at home without direct support from HCPs [11]. Apps could provide an innovative platform to overcome the accessibility barrier, where women can acquire knowledge and communicate with peers and HCPs when and where needed [7].
In 2017, 89% of the Chinese population owned a mobile phone [12], and approximately 653 million Chinese people accessed the internet via their mobile phone [13]. Taking advantage of their easily accessibility, apps have the potential to demonstrate their value on health promotion with a robust program. However, our recent integrative review found that there remains a paucity of randomized controlled trials (RCTs) to evaluate the app effectiveness specifically targeting at women with breast cancer undergoing chemotherapy [14]. Furthermore, women's perceptions and experiences related to using and interacting within the app-based programs during chemotherapy have rarely been reported [14].
Therefore, an app-based Breast Cancer e-Support program was developed [15] and evaluated using a single-blinded, multicentered RCT (ACTRN: ACTRN12616000639426) [16]. The components of this program were guided by four factors (direct mastery experiences, vicarious experiences, verbal persuasion, and arousal state) from Bandura's self-efficacy theory [17] and structural support and functional support from the social exchange theory [18]. This program supported women for 12 weeks covering four cycles of chemotherapy and had been shown to significantly improve the self-efficacy, QoL, and symptom interference on daily life for women at 3 months of follow-up, as reported in Part 2 of this study (forthcoming) [19].
Process evaluation is an important part of an RCT to understand the program effectiveness [20]. Identifying how women appraise different components, especially for a multicomponent app-based program, can give insights as to why and how the program achieves or fails in the desired outcomes, further improving the design of a future trial [21]. Thus, this qualitative process evaluation aimed to explore the participants' perception of Breast Cancer e-Support program, the strengths and weaknesses of this program, as well as their improvement suggestions.

Study Design and Participants
A descriptive qualitative study was employed. The first author recruited women from the intervention group in an RCT examining the effectiveness of the Breast Cancer e-Support program. Women were eligible for the main study if they had commenced chemotherapy at the study sites after diagnosis of breast cancer, were able to access the internet via a mobile phone, and were able to read and write Mandarin. The study was approved by the institutional review board of Xiamen University affiliated Zhong Shan Hospital (zhu20151023), Central South University affiliated Hunan Cancer Hospital (zhu20151026) in China, and the University of Newcastle in Australia (H-2015-0448). Written consent forms were obtained from all participants.

Breast Cancer e-Support Program
A website was developed, with the introduction of the Breast Cancer e-Support program and the two-dimensional code for women to scan ( Figure 1) [22]. Once women downloaded the app, the home page displayed a button for the user to submit an application that the first author (JZ) either approved or declined through the app background thread to ensure only the intervention group had access to the Breast Cancer e-Support program with a unique username and self-set password. This application process prevented contamination between the two groups and protected the privacy of participants in the Breast Cancer e-Support program. The development process of the Breast Cancer e-Support program applied user-centric design and assessed the perceived ease of using the app [15]. This program supported women for 12 weeks covering four cycles of chemotherapy (1st-4th cycle of chemotherapy), with each cycle lasting 3 weeks. The Breast Cancer e-Support program had four components: Learning forum, Discussion forum, Ask-the-Expert forum, and Personal Story Forum [16]. The Learning forum provided knowledge and symptom management strategies related to breast cancer and chemotherapy. The Discussion forum offered an online platform for women to chat with one another. The Ask-the-Expert forum served as a communication channel for women to ask questions and receive advice directly from experts within 24 hours. The Personal Story forum presented five encouraging stories of other women who had successfully overcome obstacles during chemotherapy. On the basis of women's topics and questions, the information in the learning forum was updated every 2 weeks to address women's concerns. The Discussion forum and Ask-the Expert forum were moderated by the first author (JZ) who is an HCP. The moderator facilitated the online discussions and sent a reminder message to the doctors with incoming questions. Eight doctors from the study sites joined this program and responded to the questions in the Ask-the Expert forum. Technical assistance was available for the workday. The details of the Breast Cancer e-Support program can be found in the study protocol published in BMC Cancer [16].

Recruitment
For the process evaluation, we applied purposive sampling based on scores in the primary outcome of self-efficacy at 3 months. The Stanford Inventory of Cancer Patient Adjustment was used to assess women's self-efficacy to manage cancer-related problems [23]. The Stanford Inventory of Cancer Patient Adjustment contained 38 items rated from 0 (not at all confident) to 10 (absolutely confident). Higher total scores represent higher self-efficacy. We selectively approached women with higher and lower (ratio 1:1) scores than the mean score of self-efficacy. We achieved data saturation at the 10th participant. No additional data were yielded with three additional interviews, giving a total sample of 13 women [24]. Of the 13 interviewed women, 7 participants were higher and 6 participants lower than the mean score of self-efficacy.
Interviews were conducted from November 2016 to February 2017. As these two participating hospitals are in two different provinces in China, we undertook face-to-face interviews for women in Zhong Shan Hospital and telephone interviews for women in Hunan Cancer Hospital to achieve a sufficient sample size. The first author (JZ), who was a female PhD student in nursing and who had established a good relationship with women during moderating the online discussion, invited women by telephone to participate, giving a clear explanation of the aims of the interview. Women were informed that the interview would take 10 to 20 min and that the interview would be audiorecorded. A total of 18 women were approached. Five women declined to be audiorecorded and thus excluded. A total of 5 women from Zhong Shan Hospital were interviewed one-to-one in a meeting room in the hospital. Field notes were taken during the interviews. A total of 8 women from Hunan Cancer Hospital were interviewed by telephone. The duration of the interviews ranged from 7 to 27 min.
A semistructured interview guide (Table 1) with five questions was prepared for the interview. Two academic experts in psychoeducation and cancer care provided comments on clarity and content of the interview guide. What was your experience of using this program? 1 Probe: How did you feel participating in this program?
What were the main strengths or benefits of this program for you? 2 Probe: Which aspect of this program was most beneficial for you? Why?
What were the main weakness of this program for you? 3 Probe: Which aspect of the program was least beneficial for you? Why?
What suggestion will you give to improve this program? 4 Probe: How can this program be improved further?
Do you think this program should be continued? 5

Analysis
Inductive content analysis was used to analyze the transcripts, allowing the categories to flow from the data [25]. Qualitative content analysis was conducted in the original language, following Graneheim and Lundman's [26] steps for analysis procedures to achieve trustworthiness. Audiotapes were transcribed verbatim into written Chinese by the first author immediately after the interview. The first (JZ) and third authors (DG) performed the initial coding independently. Transcripts and field notes were repeatedly read through to obtain a broad picture of the whole. Transcribed data were coded and analyzed. The various codes were compared regarding the differences and similarities, and interpretations of the codes were sorted into subcategories. Finally the underlying meanings of the subcategories were grouped into categories. The research team had regular meetings to examine and revise the tentative subcategories and categories. Any coding discrepancies were discussed to ensure consensus. Two experts in qualitative research reviewed the process of data collection and analysis. Participant's quotes were translated into English. English translation of the results and direct quotes were checked by the last author who is bilingual (English and Chinese).
In total, 13 women in the intervention group participated in the interview, with mean score of self-efficacy at 3 months as 218.58 (SD 68.1; range 108-349). These 13 women had comparable demographic or clinical characteristics as all participants in the RCT, except for education level (χ 2 0.05,4 =10.8, P=.01). The interviewed women had significantly higher education level than all participants in the RCT. The demographic or clinical variables of the 13 participants are summarized in Table 2.

Overview
From the content analysis, four categories emerged: (1) benefits of participation, (2) challenges to engagement, (3) suggested improvement, and (4) future direction. All the categories and subcategories are summarized in Textbox 1.

Category 1: Benefits of Breast Cancer e-Support Program
A total of 9 women found that the Learning forum was most beneficial, and 3 believed that the Discussion forum was most beneficial. A total of 5 women found the Personal Story forum as being least beneficial. Six women did not identify any forum to be least beneficial. Participants reported many benefits from the different forums, including enhanced knowledge, improved confidence levels, promoted emotional well-being, access to tailored advice from experts, as well as being easy to use, convenient, and easily accessible.

Subcategory 1: Enhancing Knowledge on Symptom Management, Breast Cancer, and Chemotherapy
Most of the women mentioned that they gained a better understanding of breast cancer, chemotherapy, and how to manage a variety of symptoms after participating in the Breast Cancer e-Support program:

Subcategory 2: Improved Confidence Level
Two women said they felt more confident as they watched the encouraging videos in the "Personal Story forum," and 3 women mentioned that their confidence levels were increased when reading other participant's experiences shared in the "Discussion forum." Others' stories served as the role models to build confidence for these women. When women saw someone succeed in a similar situation, they felt empowered and more positive:

Subcategory 3: Improved Emotional Well-Being
Most women mentioned that they felt much better when they read the information in the Learning forum and interacted with peers and HCPs through the program. They were less distressed as their perception about breast cancer altered and their queries answered. They felt reassured knowing that they were not alone in the struggle with breast cancer, and they had peer and professional support available. This is revealed from the following statements by 2 women:

Subcategory 4: Received Advice From Experts
Some women appreciated the Ask-the-Expert forum as the advice was tailored to their own needs, which was "direct and targeted help." They felt supported as they had experts to answer their queries and received timely responses. The advice from an expert acknowledged their symptoms, validated their concerns, interpreted the lab results, and gave some useful suggestions. One woman stated:

Category 2: Challenges to Engagement of Breast Cancer e-Support Program
Participating women highlighted several challenges to engagement in the Breast Cancer e-Support program. Challenges were associated with physical or psychological health status, stigma with breast cancer, and instability of the app.

Subcategory 1: Physical or Psychological Health Status
Some women mentioned that the severe physical symptoms such as nausea and fatigue hindered their engagement of the program. Psychosocial symptoms related to fear of recurrence and death added to their distress, further hampering women's engagement of Breast Cancer e-Support program. This is echoed by the following statements:

Subcategory 2: Stigma With Breast Cancer
Some women experienced stigma with breast cancer. They perceived themselves as having a "disability" and felt that they would be rejected by family and friends if they made their condition known. Women felt ashamed to have breast cancer, and using this program reminded them of their illness. Women who felt this way reduced the usage of the Breast Cancer e-Support program because they did not want to be reminded that they had breast cancer or they were different:

Category 3: Suggested Improvement
Many women gave suggestions on how to improve this program, including design improvement; interesting, plain, and practical content; updating the information more often; and quickening response to women's questions.

Subcategory 1: Design Improvement
Some women suggested a design or technical improvement such as adding the message reminder and search engine to facilitate instant communication in the Discussion forum and help women to locate the information they needed in the Learning forum. Two women were of the following opinion:

Subcategory 2: Short, Interesting, Plain, and Practical Content
Some women mentioned that the information in the Leaning forum should be short, interesting, and practical. Also plain language should be used to convey the knowledge. Adding more content on food choice was requested by 6 women. Five women said they didn't tap into the "Personal Story forum" very often and hadn't benefitted from the video much. Videos being too long was identified as the main reason, and the majority of women suggested that the video should be short and focused:

Subcategory 3: Update the Information More Often
Some women mentioned that the information should be updated more often because they required different information and faced new problems as their chemotherapy progressed. One woman stated: We have so many people in the discussion forum.

Subcategory 4: Quicken the Responses to Women's Questions
Some women said they preferred receiving an answer immediately from the HCPs, but there were often delays in responses to their questions:

Category 4: Future Direction
Most women were satisfied with this program and advocated it as routine care. Some women also suggested opening this program to caregivers. One woman recommended applying this program to other cancer groups.

Subcategory 1: Breast Cancer e-Support as Routine Care
Most of the women said that as this program was very beneficial for them, this program should be available to more women with breast cancer as routine care:

Principal Findings
In this study, we evaluated participants' perception of an app-based program that they had access to during four cycles of chemotherapy. This process evaluation supported the quantitative results of the RCT that the Breast Cancer e-Support program was useful and feasible [19]. This study helped in understanding what challenges exist with the engagement of the Breast Cancer e-Support program. Despite the challenges, the participants provided constructive suggestions for improvement related to the design, content, and operation of this program. The participants recommended the Breast Cancer e-Support program be incorporated as routine care to support women during chemotherapy.
Women in this study reported that the Breast Cancer e-Support program was helpful in enhancing knowledge, improving confidence level, and promoting emotional well-being. They valued the tailored advice from experts. These findings could be explained by the theoretical framework of this program: Bandura's self-efficacy theory [17] and the social exchange theory [18]. Self-efficacy, an individual's perceived ability to perform a particular task in a given situation, is an important concept that influences women' ability to manage their disease and chemotherapy [17]. Four factors such as direct mastery experiences, vicarious experiences, verbal persuasion, and perception of their physiological state from Bandura's self-efficacy theory [17] were addressed in the Breast Cancer e-Support program by offering knowledge and skills, providing hopeful stories, and encouragement from peers and HCPs. In addition, supported by social exchange theory, the Breast Cancer e-Support program provided a channel to connect women with structural support and a variety of functional support, which are identified as the essential components of social support [18].
Many women stated that the Breast Cancer e-Support program was easy to use and convenient. Compared with traditional face-to-face interventions, connecting with the Breast Cancer e-Support program meant that women were able to access information and social support at anytime and anywhere [28]. Taking advantage of the app's technical capabilities, this program provided women the opportunity to learn tailored information, watch encouraging stories, and chat with peers and HCPs [16]. Even though the majority of women enjoyed the convenience and multifunctional ability of the Breast Cancer e-Support program, one woman identified the app instability as a challenge to the engagement of this program. It is hard to determine whether the app instability was because of the internet connection or the app itself. But still, there is a need to improve the app reliability and to offer sufficient technical support service to participants [29].
This study revealed that some participants felt too sick or in a low mood to use the Breast Cancer e-Support program during chemotherapy. Consistent with our study, the association between poor health status and infrequent computer use was reported [29,30]. Furthermore, Chinese women might fail to disclose their negative emotions when confronting a life-threatening disease [31], which may have prevented participants in this study from sharing their feelings in the Breast Cancer e-Support program. In traditional Chinese culture, family members are obliged to take care of the patients [32]. Family-centered approach should therefore be adopted in the future app-based studies, so that a family member can also use the app in need when women are experiencing severe physical and psychosocial symptoms.
In our study, stigma related to breast cancer was reported to prevent the utilization of this program. Culturally, Chinese women are not willing to talk openly about breast cancer because of the perceived social rejection and low self-esteem associated with being ill and the disfigurement of breast surgery [31]. Women's concerns on stigma may also hinder their emotional expression and support seeking behaviors in this program, thus reducing their engagement. Culturally sensitive education and peer support were reported to help reduce stigma and increased a sense of belonging for Chinese women with breast cancer [33]. Integration of culturally tailored support regarding stigma into the Breast Cancer e-Support program may alter women's perception on stigma, thus improving their engagement.
During process evaluation, women also gave constructive suggestions for improvement in design, content, and operation of the Breast Cancer e-Support program. Design improvement involved adding message reminders to prompt instant communication with peers and shorten the response time from the experts, as well as adding a search engine function to help quickly locate information. Content improvement included supplementing more interesting and practical knowledge (eg, more pictures, cartoons, and food choices), plain language used, and short and concise videos to convey information. Our study indicates the demand for health service that optimizes on instant communication and improves efficiency on information delivery [34]. Operational improvement referred to knowledge being updated more often and questions being responded to more quickly. HCPs' involvement, such as knowledge updating and timely feedback, is crucial to reinforce women's app engagement [34]. In recent years, user-centered design has gained recognition in app development [35], and user-friendliness has been incorporated in the app assessment [36,37]. Thus, these valuable comments from users' experiences identified in our study should be addressed in future app designs and operation to encourage app engagement.
In our study, half of the interviewed women emphasized the importance of diet guidelines during chemotherapy. They believed that food choice was very practical, and this program should add more diet details. Diet is imbued with Chinese culture [38], and the need for more specific diet information was considered important. Traditional Chinese medicine is evident regarding diet and food properties among Chinese women with breast cancer undergoing chemotherapy [39]. Specific food recommendations that are culturally sensitive should be addressed for future app-based programs targeting different sociocultural groups.
Many participants recommended the incorporation of this program as routine care during chemotherapy. Some suggested the Breast Cancer e-Support program should be generalized to other family members or other cancer patients. These recommendations indicated that women regarded this program useful and beneficial to other patients. With the increasing growth of mobile phone users [12], it is possible for all patients and their family caregivers to have such an app service available. Moreover, benefiting from the rapid advances in mobile technologies [7], future app-based intervention may convey information via multimedia for illiterate and old patients.

Strengths and Limitations
This study has limitations. This study was limited to those who were able to access the internet via a mobile phone and who were willing to be interviewed. This inclusion criteria may have narrowed the participant cohort to those who were technologically comfortable with mobile phone use and who had a high level of motivation to share their experiences. Moreover, there might be bias of the findings as the interviewed women were better educated than all participants in the RCT. Our results may not be representative of the views of all women with breast cancer in general. Two women in the intervention group who never accessed the program were not interviewed (one lost contact, one refused). Therefore, we were unable to explore further the reasons for nonuse of the app-based program. The strength of the study is that this process evaluation gathered rich qualitative data of participants' views on the benefits, challenges, improvement suggestions, and recommendation for an innovative intervention.

Conclusions
The study provides evidence on the benefits of the Breast Cancer e-Support program and contributes to an increased understanding of some challenges of why women could not engage in this program as much as expected. This study also discussed some improvement suggestions and future direction of the app-based program from participants' view. Such knowledge is crucial, and future app-based interventions could address participants' improvement suggestions on design and operation, apply family-centered approaches, and provide more support on stigma associated with the condition to encourage the app engagement and provide better support.
Our study also has global significance because apps are being increasingly recognized as supplementary interventions when the feasibility of traditional face-to-face interventions are challenged. This app has the potential to be used by Chinese women in Australia and also be translated to other languages to help the culturally and linguistically diverse groups to promote their health outcomes. The knowledge generated from the study can be used to develop guidelines for future health care app development.