The results demonstrate how knowledge, competence, and motivation influence women’s experience of the health information process. Below we summarize these data in the context of three main themes: Harmonize interactive and personal needs engaging with health information; Critical recognition of sources of information; and Capability to communicate comprehended health information (Table 3).
Different formats of information resources
During the waiting period before commencing RT, the women navigated through various sources of information. The assimilation of information using a combination of different media (Internet, interpersonal communication, the Digi-Do) simultaneously was described as enabling better comprehension of the RT treatment. The interpersonal meeting with the HCP at the surgical, oncology and RT departments was seen as being a valuable source of information and the health information provided there was deemed trustworthy. Nonetheless, at times, having a vast amount of information presented during a short space of time in the meetings with HCPs made it difficult for the women to comprehend the material. Further, the context influenced the conversation and the women’s capability to ask questions. Thus, to sit down in a consultation with an HCP was perceived as being more useful. The face-to-face meetings gave opportunities to ask questions and gain answers about their health from the experts. The meetings were reinforced with written information (brochures), which was often seen as helpful. Previous health experiences and expectations of the interpersonal meeting had an impact on understanding what had been discussed. It was also noted how the presence of a low emotional state could have a negative influence on the comprehension of the information. Additionally, side-effects from previous chemotherapy sessions could affect what the women remembered after the meeting.
‘I can ask something, and it was the same when the doctors sat there and told me something and when I came out from there, I remembered maybe 10% of what had been said.’ (Woman #12)
The Digi-Do was seen as being a valuable complement to the interpersonal meeting, enabling them to have quick access to reliable information. The tool enabled an increased understanding of their own health, cancer, and the RT process, both before, and during and after the meeting. The participating women described how the Digi-Do presenting information in different formats (simulated visit, written text, voice-over, animated films) was seen as being a stimulating way to learn. The ability to choose what information to access, and to repeat and revisit the information, helped the women to comprehend and gain a better understanding of the meetings with HCPs and the RT process.
‘It was probably a combination of seeing the environment and obtaining information … I was somehow more prepared for what would happen.’ (Woman #3)
The meetings with HCPs within the RT setting were perceived differently. Although the staff were portrayed as being friendly and professional, the environment was experienced as being stressful, with other patients waiting in line, leaving little or no time for the women to ask questions.
‘It’s like in and out and in and out just like that. So you don’t have many seconds to exchange words with them.’ (Woman #7)
Health-related barriers, such as reduced eyesight, made it difficult to read written text in brochures, on online websites, and in the Digi-do. Not common but observed was a negative attitude towards digital technology. A frustration linked to a lack of experience of using digital technology was expressed and there was an apprehension of making mistakes or damaging the equipment, for example, pressing the wrong key or when handling the VR-goggles.
Social media was seen as an effective medium for instantaneous communication with other people, despite a certain degree of suspicion around privacy. It was voiced how support in the style of emojis of hearts was encouraging, providing a sense of being cared for. To be active in breast cancer groups enabled contact with other women who shared similar experiences. This was seen to be beneficial as it reduced a sense of being alone.
‘Had there not been social media and this had happened 15 years ago and there had been the pandemic at the same time, I think I would have experienced a greater sense of isolation.’ (Woman #1)
Empowerment through tailored health information
The health information obtained from online sources, the Digi-Do, and, at times, the interpersonal meetings, was found to be too general. This was viewed as a disadvantage, as the women wished for information that they could relate to their own personal situation. Some of the women expressed how accessing information would only increase their distress. Consequently, they were restrictive in accessing information from both HCPs and other sources such as the Internet.
.I told the doctors to only tell me only exactly what I needed to know.’ (Woman #12)
For some of the women, the term breast cancer had negative associations, which at times led to adverse effects when searching online. Thus, negative associations hindered the women from knowing what to search for. Fear of not being sure of what type of information they would access, or what to do with the information, was expressed.
‘I won’t become calm. To find out more about the cancer or treatment won’t contribute to my wellbeing. I just have to wait and see what is to come.’ (Woman #8)
As most of the women had not previously attended the hospital where they received RT treatment, the ability to self-navigate where to go and what to see using the VR-application was very much appreciated. While some of the women enjoyed using the VR-goggles to gain a simulated view of the hospital setting, others experienced dizziness. At times there were some minor technical difficulties when handling the VR-goggles. The majority of the women preferred to navigate through the environment with their finger directly on the mobile screen as they found that they could still engage in walking through the environment without having to bother with the VR-goggles. The simulated visit to the high-technological environment with a voice-over explaining what they saw, for example, their position on the RT bed, was a seen as a modern way to learn about the clinical setting. This was mentioned as being something that enabled them to better understand and made them feel less anxious.
‘I have never experienced this kind of shifting pictures before, this VR-application where you can decide where to go and see where you are going to have RT was great!’ (Woman #7)
Further, the flexibility to be able to access the Digi-Do using a smartphone was seen as beneficial. As many of the women often had their smartphones nearby, they could easily look at the set of questions-and-answers to obtain answers to any concerns that might come up.
‘Sometimes a question pops up and you want to check it right away. So instead of having to go home and look up some paper that you have left somewhere you have the answer at hand straight away.’ (Woman #12)
There was a voiced appreciation of having seen the environment before attending the first appointment. This facilitated a better understanding, which made the women feel more in control. It was also indicated that having previously seen the environment increased their sense of control and reduced distress, enabling the women to focus more of what was being communicated by the HCPs.
‘… you can take in more of what is said during your first visit because you don’t have to be nervous or that you won’t be able to find where you are going.’ (Woman #10)
The ability to share the tool, allowing significant others access to the information, was described as being valuable and beneficial, both for the women and for the person they shared the tool with. The VR-app in particular was shared with both children and elderly parents. It was found that sharing the tool with others enabled them to obtain a better understanding of the woman’s situation, which enhanced support. Further, it was expressed that just knowing that, for example, the spouse had seen and experienced what the women was going through enhanced a sense of alleviation for the women. Additionally, it was noted that the Digi-Do could be used as an aid to answer and clarify questions from concerned significant others.
Using the tool he (her husband) got an insight into it all, he gained access to the information and the simulated environment … it was fantastic, as he could be involved too.’ (Woman #4)
The regularity and frequency of accessing information online or applying the Digi-Do varied. Like the use of Digi-Do, the rate of recurrence of seeking information on the Internet peaked during the waiting period for commencing RT and became less frequent once the treatment had started. With regards to the Digi-Do, it was found that the women primarily employed the VR-app before the start of the RT, while the information-app was utilized throughout the course of treatment. Some of the women re-visited the Digi-Do after completion of the RT treatment, as they found that this facilitated more of an understanding of all they had gone through.
Critical recognition of sources of information
Information received from the HCPs was generally found to be presented in a straightforward language and was easy to interpret and appraise. In relation to information obtained on the Internet, most of the women saw themselves as being critical, reading only information on sites that they deemed credible. To be deemed credible, the Internet site had to be well-known, recommended by HCPs, and non-commercial. Others did mention reading information on sites without questioning the quality of the source. At times the information accessed on the Internet was validated with HCPs or significant others who worked within the medical profession. Accessing personal experiences shared on social media by other women diagnosed with breast cancer triggered mixed emotions. There was a voiced scepticism towards information accessed on social media groups as it at times was found to be biased and inaccurate.
I feel that sometimes when you read blogs or similar you are dragged down and you become low. No, it’s nothing that suits me ...’ (Woman #11)
Despite this, it was found how chatting with those sharing a similar experience was described as being a relief and a way to affirm their frame of mind. The information attained in these conversations was interpreted and applied to their own situation, making this more credible rather than reading about it.
‘… it is nice to talk to someone who knows what you’re talking about … someone who doesn’t get worried about me ... it’s nice to get confirmation that you are normal in your illness.’ (Woman #12)
After initial apprehension, some women found that the Digi-Do tool was relevant in meeting their needs. They reported that the 360-degree images presented in the VR-application gave an accurate description of the environment. Nonetheless, it was voiced that the images in the VR-app were not always identical to the hospital space, due to recent refurbishment. The benefit of combining the different formats in the two applications was described as being useful, and the information was deemed to be both credible and easy to comprehend. One of the women, who worked in a clinical setting herself, thought that the information was of a satisfactory level and accurate.
‘Even if I hadn’t known anything about healthcare, I probably would have perceived the Digi-Do as great … I thought the level of the information was satisfying.’ (Woman #8)
Capability to communicate the attained health information
Obtaining an understanding of the diagnosis and treatment process was essential for creating a sense of control. Further, this increased the sense of being prepared before starting RT. Having this knowledge encouraged the women to engage in conversations about health. Many of the women mentioned how their increased understanding enabled them to be more active in communicating with the HCPs. Their state of mind, being happy or sad, influenced the women’s capability of participating actively in decisions related to health.
‘Then maybe I haven’t been really capable … I’ve been mostly sad and scared, maybe I haven’t taken advantage of engaging in communication with the health care professionals and participating in health decisions.’ (Woman #5)
To experience a simulated visit to the clinical setting using the VR-application enabled a comprehension of the environment and the RT procedure. To see the environment before the initial visit enabled a sense of control. It was described how, by already being familiar with the hospital before their first visit, their distress was reduced as the women recognised where to go. As the women felt calmer, armed with this prior knowledge they were able to focus on different questions in the initial meeting with the HCP. Instead of most of the attention being placed on the high-technological environment and practical questions, it was suggested that the interpersonal meeting might be more focused on what was relevant to them as a person.
‘… at the first visit you can take in more of what is being said because you don’t have to be nervous of not knowing where to go or about the environment.’ (Woman #10)
It was found that the increased knowledge gained from accessing information through various sources enhanced the women’s ability to talk about health with other people, not just HCPs. As mentioned, having easy access to the applications on a smartphone enabled the women to show others what they had gone through in a simple and straightforward way, fuelling further interesting conversations.