In summary, the NV procedures were accepted by the breast cancer survivors in this study. These survivors understood the workbook instructions and were able to use the provided supplies as intended. Participants took approximately 9 of the expected 10 photos for the week. They also completed all of the expected 15 workbook pages, except for one missed weekly log page, and used an unexpectedly large number of stickers to illustrate their pages.
Regarding the utilization of supplies provided, the use of fitness and motivation stickers was not unexpected given that participants were focused on their PA. However, it was notable that they chose to use near equal numbers of positively and negatively themed emoji stickers possibly due to widespread use of emojis in modern text communications and a related feeling of comfort using them to express feelings, both good and bad . In addition, cancer survivors tend to experience a large range of emotions as they adjust to life after cancer, particularly given the painful treatment process and related negative side effects . Therefore, the tendency for the breast cancer survivor population to use both negative and positive emojis to communicate their feelings warrants further study.
Several participants experienced a learning curve when using the instant cameras for the values clarification portion of the workbooks; since the cameras were preloaded with 10-packs of film when dispensed, there were usually fewer than 10 photos included in the workbooks. However, all participants expressed how they enjoyed and valued this part of the study. Huldtgren et al. suggested that decision making could be improved by focusing on personal values; similarly, the photographs taken as part of our study inspired the participants to reflect on their values . In addition, Issacs et al. found their participants to benefit from photojournalism since the images served as reminders of positive experiences . Here, photos of participants’ family were often featured, which agrees with the literature showing family to be a significant motivator for PA adoption and maintenance [35, 36]. These investigators also found friends to be significant motivators, again similar to our findings.
Participants used nearly all the space provided for them to draw their daily step charts and to answer questions about their daily activity. These results are in line with previous findings in the communications and human-computer interaction fields, which showed that individuals who self-monitored wanted options for storytelling and emotional self-expression [37, 38] and scaffolding to help them get from receiving new information to acting upon that information [39, 40]. Participants used photos, drawings, stickers, and text to reflect on their values as well as their identity, integrating them with their PA data to tell stories about their lives . This process reflects what has been called the “qualified self,” as opposed to the “quantified self” that is commonly discussed in regard to PA self-monitoring [42, 43]. Robertson et al. found that cancer survivors’ preferences differed from current standards used in application development for mobile devices in that they preferred value-based rather than numeric goals . They also preferred PA data to be interpreted and contextualized. Here, numerical PA data was similarly one part of a larger set of data that described our participants’ attitudes towards PA and how it fit in with other mundane aspects of their day-to-day lives such as chores and shopping. Further, they discussed these stories in the context of larger issues, such as family obligations, religion, and the impact of illness on their lives.
Weight loss was not identified as a major theme, though it is often the primary theme of many PA-related programs. Breast cancer survivors in this study were more focused on spending time with family and felt that improving their physical health could improve the quality of this time. They also focused on how their health impacted their PA. For example, several participants commented on how going to physician appointments or helping others go to their physician appointments negatively impacted their ability to do PA. In addition, whether they felt good or bad after these appointments also directly impacted their attitude toward their own PA goals.
These findings have several potential implications for future studies. PA interventions among the cancer survivor population should consider how activity monitors are utilized by the participants. Numerical data, particularly those focused on calories or steps, may be less meaningful to most participants than visual data such as graphs and progress charts. Activity monitor manufacturers provide several types of visual data in their applications, but current research rarely focuses on these aspects.
The tactile nature of our visualization procedures also suggests several potential areas of future research. The stickers we provided were extremely popular. It is not clear whether virtual stickers would have a similar impact to the tactile feeling of sticking a physical sticker to a piece of paper. We adopted a hybrid approach to this study, with electronic data collection but hard copies of all scrapbooking materials. As part of this decision process, we opted to use instant cameras with printed out photos rather than digital photos. Future studies may wish to investigate differences between purely digital scrapbooking, for example using an app like Day One (https://dayoneapp.com), as opposed to tactile scrapbooking such as was used here.
While the acceptability of this novel NV technique and insights gained from the utilization of the materials as noted above are the strengths of this study, it also had some limitations. First, this was a formative study focused on the acceptability of a novel intervention and thus, interpretations are limited by the small sample size. Also, since the primary goal was to gain feedback on the intervention equipment and utilization, the duration of usage was relatively short (7 days). Third, an unexpectedly large proportion of participants (three of the twenty) were lost to follow up despite this being a very short-term study. While this was unexpected and is unusual based on previous studies, we believe that the loss of contact with one participant and the loss of another to an acute health issue were likely chance occurrences. The third lost participant provided important information in that the scrapbooking activities were culturally inappropriate for her, which provided insight for future studies in this population (e.g., exclusion criteria added during recruitment, or adaptation of NV strategies to be more broadly culturally acceptable or tailored to specific cultures). Finally, since our target population is older women breast cancer survivors, generalizability is limited in age and gender. Additional research is needed to investigate whether these materials and procedures are acceptable in other populations.