Demographics
Thirty-two women who had recently completed BC chemotherapy were interviewed. Majority were between ages 41-50 (34.4%). Most were married (62.5%), Christian (75%), had tertiary level education (68.8%) and monthly household income of USD120 (34.4%), and were diagnosed with stage III BC (34.4%). Socio-demographic data are presented in Table 1.
Table 1
Socio-demographic data of the participants (N=32)
Variable | | Frequency | Percent |
Age, mean (SD) 48± (12.78) |
Marital status | Single | 5 | 15.6 |
Married | 21 | 62.5 |
Separated | 1 | 6.7 |
Widowed | 4 | 12.5 |
Divorced | 1 | 3.1 |
Ethnicity | Yoruba | 16 | 50.0 |
Igbo | 12 | 37.5 |
Hausa | 1 | 3.1 |
Edo | 1 | 3.1 |
Urhobo | 1 | 3.1 |
Igala | 1 | 3.1 |
Religion | Christianity | 24 | 75.0 |
Islam | 7 | 21.9 |
Catholic | 1 | 3.1 |
Level of education | No formal Education | 2 | 6.3 |
Primary | 2 | 6.3 |
Secondary | 5 | 15.6 |
Diploma | 1 | 3.1 |
Tertiary | 22 | 68.8 |
Stage of breast cancer | Stage 1 | 7 | 21.9 |
Stage 2 | 5 | 15.6 |
Stage 3 | 11 | 34.4 |
Stage 4 | 4 | 12.5 |
I don’t know | 5 | 15.6 |
Monthly household income | Less than 20,000NGN (50USD) | 8 | 25.0 |
21,000-50,000NGN (120USD) | 11 | 34.4 |
51,000-100,000NGN (245USD) | 6 | 18.8 |
101,000-150,000NGN (370USD) | 2 | 6.3 |
Above 150,000NGN | 5 | 15.6 |
Themes
Four major themes emerged, including experiences of BC diagnosis and treatment phase, patients’ needs during chemotherapy, coping with chemotherapy, and perception of mHealth intervention for psychoeducational support. These themes are further elaborated into various sub-themes (See Table 2).
Table 2
Themes and sub-themes generated from the interviews
Themes | Sub-themes |
Experiences of breast cancer diagnosis and treatment phase | • Emotional turmoil with breast cancer diagnosis • Different experiences with the first cycle of chemotherapy • Psychological disturbances during chemotherapy |
Patients’ needs during chemotherapy | • Need for information from reliable sources • Need for psychological support and reassurance |
Coping with chemotherapy | • Resources available for coping • Strategies adopted for illness adjustment |
Perception of mHealth intervention for psychoeducational support | • Suggestions for the design of mHealth intervention • Incorporation of cultural elements • Facilitators for using mHealth intervention • Perceived barriers to using mHealth intervention • Acceptability and feasibility of the usage of mHealth intervention |
Experiences Of Bc Diagnosis And Treatment Phase
The participants perceived diagnosis with BC as highly challenging. On receiving the diagnosis, some were confused, scared, and shocked. Participants’ experiences in this regard are further discussed under three sub-themes.
i. Emotional turmoil with breast cancer diagnosis
Receiving the diagnosis was psychologically burdensome and shocking for the women. All of them were emotionally challenged after they received the diagnosis. It was clear that none of them was prepared for such an occurrence.
“I felt that the whole world was coming to an end. I cried and cried. I said, “God why, me…” (Participant 5).
“It was the saddest day of my life. It was even on my birthday. When people were calling telling me happy birthday, I was telling them it was a sad birthday” (Participant 1).
ii. Different experiences with the first cycle of chemotherapy
Many women felt that the first cycle of chemotherapy they had was more challenging than the other cycles they received.
“The first chemo…My God I almost ran mad. I was on admission. In fact, I could not stand. I thought I was gone. They said I passed out. I was hearing them from afar” (Participant 13).
“My first dose of chemo was not an easy one. It was easy to take it, but it was challenging to battle the side effects at home. It was as if another demon from hell was coming to dominate this body…” (Participant 8).
However, some participants opined that the first chemotherapy cycle was not challenging for them.
“The first chemo did not trouble me much. I was eating as I like; I just witnessed a little discomfort the first and second day” (Participant 25).
iii. Psychological disturbances during chemotherapy
Psychological concerns reported by the women include fear, anger, confusion and insomnia.
“My sister, you see, chemo will confuse you. When I started chemo, I was weighing 138kg. 1st Chemo took 13kg!” (Participant 9).
“...even to sleep on my bed, I become scared. Because it is as though once it is 12 midnight something strange was coming to possess my body…” (Participant 8).
“Sometimes I will be shouting at my children, I became very irritable and aggressive.” (Participant 20).
Patients’ Needs During Chemotherapy
While receiving chemotherapy, the needs of the women were majorly informational and psychological. Many of them got confusing information online and from friends and relatives. These needs were further elaborated in two subthemes.
i. Need for information from reliable sources
The participants’ responses suggested that they did not have enough information before and during chemotherapy. They wished they had more information about diet, exercise and the mode of action of the chemotherapy.
“I didn’t know they would cut off my breast after the injection; they didn’t explain very well to me. Even for the chemotherapy, they did not explain well…” (Participant 10).
“The major informational need I had was on nutrition. Like when I want to go to the market, what should I buy and what should I not buy…” (Participant 13).
Although many of them resorted to seeking information online, some were scared as the information they got was misleading, confusing and inconsistent. While some found the information helpful, many of them found the information unreliable, which made them feel uncertain about their prognosis.
“Google will take you where you don’t want to go. When I google, I was confused as I didn’t see anybody to put me through…” (Participant 8).
“When I got the diagnosis, I said I was not going to go for chemotherapy. So, I tried different supplements. But they were not successful, so I came back to the hospital. But by then, I was between life and death” (Participant 9).
ii. Need for psychological support and reassurance
Although many of them reported that they had attended health talks on coping with the demands of chemotherapy before the commencement of their chemotherapy sessions, they felt they needed personal counselling sessions.
“Except for the weekly health talk, there was really no personal counselling. They just did a general health talk” (Participant 6).
“I think one thing is missing, counselling. How can people come here crying and they still go out of the hospital sad? There must be time for counselling” (Participant 4).
3. Coping With Chemotherapy
Although the participants perceived chemotherapy as highly challenging, coping resources were available, and some coping strategies were adopted for adjustment. This is further elaborated in two subthemes.
i. Resources available for coping
Coping resources identified by the participants can be categorised into family members, friends, BC survivors, health professionals and the church.
“My aunt was a huge support to me. She is 80 now. She is a BC survivor. I concluded that if she could survive it over 20 years ago when technology was not this advanced…what am I afraid of…” (Participant 13).
“My children all rallied around me. They have been giving much money, running into millions of naira.” (Participant 19)
“I just want to thank the nurses and the doctors here. They are very hardworking. Thank you for your love and care. The love, attention, care and support were really helpful” (Participant 25).
“My whole church was aware. Because of my financial state, I could not pay the hospital bills here so my whole church was supportive in terms of praying and raising money for me, especially the church women” (Participant 8).
Furthermore, many of them found smartphones to be a major source of support while receiving chemotherapy.
“Smartphone is like my doctor, consultant, and dietician. The phone is a teacher and even more than a doctor. Before you see a doctor, the phone has helped you to get an answer” (Participant 8).
“My phone was my top companion. Apart from God and my phone… Anything I don’t understand, I will just press it there and will get the answer” (Participant 10).
ii. Strategies adopted for adjusting to the illness
The strategies adopted for coping include positive thinking, prayer, online information and exercise.
“Determination, courage, being positive in everything, that was what pushed me through...” (Participant 10).
“With prayers, I was able to cope. And I believed God was able to support…” (Participant 26).
“The exercise helps me to eat more. Sometimes, bad thoughts will enter during the night, to sleep will become an issue. After these exercises, I also find it easier to fall asleep” (Participant 17).
“I didn’t know what to eat or what to do. I now went to check online. The kind of food I should be taking. I was like whao! Is that the secret? That was how I pushed through” (Participant 8).
4. Perception Of Mhealth Intervention For Psychoeducational Support
The participants offered various suggestions that should guide the design of such an intervention. Their thoughts are captured in the following five subthemes:
i. Suggestions for the design of mHealth intervention
The participants suggested that mHealth intervention could be delivered through a mobile application (app), and the contents should include what to expect during chemotherapy, how chemotherapy works, how to manage the side effects of chemotherapy, and information on diet.
“First thing is information about chemo. Many are afraid of chemo. But if they can put out the information, it will take the fear away. Also, there should be info about how chemo works and how to manage the side effects” (Participant 15).
“They should give information about the first stage of chemo, the second stage. They should break it down” (Participant 16).
“…what can I eat, what are the things I need to run away from. The app should also have information about exercise” (Participant 17).
The intervention features suggested by the participants include the availability of offline features, involvement of BC survivors, privacy, timely response from nurses and user-friendliness.
“If it is possible, they can do it in such a way that participants can access some messages or functions offline. Also, the app should be user-friendly, and nurses must also respond on time. There should also be feedback” (Participant 4).
“…you have to bring survivors in. If a nurse is a survivor, that can be fine. It takes a survivour to relate with what we are passing through” (Participant 8).
“Privacy is paramount. An app like Facebook is not allowed. An app like WhatsApp looks good. It should be confidential to avoid stigma” (Participant 20).
They also reported on the suitability of nurses for delivering such interventions.
“I believe nurses should be able to help us with the application. Maybe because we spend more time with them, so they answer our questions more…
ii. Incorporation of cultural elements
Some cultural elements identified during the discussion are the inclusion of food available in the local context and the availability of translation features into the three major local Nigerian languages, and information on how to balance spirituality and orthodox medicine.
“…there are many fruits and vegetables that they mention online that we don’t have around here. So, if an app with local content can be built, it will go a very long way. (Participant 7).
“There should be room for translation- Yoruba, Igbo and Hausa. Over 20 years ago, my sister-in-law died of BC. I saw her breast decaying and she did not go to the hospital but was praying. People should come to the hospital. This is a cultural issue” (Participant 4).
iii. Facilitators for using mHealth intervention
Facilitators for the usage of mHealth intervention include the availability of smartphones, regular internet subscriptions and literacy. Almost all of them had a smartphone, and they have been using it to seek information online.
“I am a regular user of my phone, so there will not be any barrier. I speak English well, and I subscribe well to the internet” (Participant 1).
“…if there is an app that can bridge the communication between patients and nurses, it will encourage the patients that at least somebody is going through the journey with them” (Participant 3).
iv. Perceived barriers to using mHealth intervention
The participants identified three major barriers: illiteracy, non-expertise in using the app, and the cost of downloading the app. The two illiterate participants suggested that their children could teach them how to use the app.
“If it does not have you paying a subscription fee to be part, that will be very fine. For me, I won’t download the app if it is not free. I prefer to be using my chrome and going on Google” (Participant 32).
“I have it, but I am not literate. For the application, my children can put me through on how to go about it” (Participant 14).
v. Acceptability and feasibility of the usage of mHealth intervention
All the participants opined that the intervention is feasible and would be acceptable. Also, they declared that they were willing to be part of the intervention when it is launched.
“This is a welcome development. We will not have to be rushing to the hospital every time for complaints that can be easily handled on the phone” (Participant 30).
For me, if such an app had existed before I started chemotherapy, I would have surely used it…” (Participant 4).
“This intervention will go a long way. I don’t think there will be many barriers, so far the app is beneficial, people will use it” (Participant 15).