We analyzed 18 patient-navigator dyads (a total of 36 separate interviews). Data saturation was reached after review of 16 dyads. The characteristics of participating patients were similar to the larger RCT sample. There were a total of three navigators in the Rochester PNRP. Each navigator worked with multiple patients. provides a summary of patient and navigator demographic information.
Patient and Navigator Demographic Characteristics
3.1. Struggles of Patient Navigation
Having reviewed individual analyses of patient and navigator interviews [11
], we wanted to use a new multiperspective approach to elucidate novel findings that might not have been apparent in the individual analyses. Relational themes of struggles readily revealed themselves as information that we could not have learned had we relied just on single perspective interviews. We discovered three themes of struggles () from our paired analysis addressing the question, “How does using multiperspective interviews shed new light on the process of navigation for cancer care?
” Since the navigator interviews tended to be longer, themes were repeatedly emphasized in navigator interviews, but less frequently mentioned in patient interviews, indicating a situation in which having dual informants was particularly valuable. The theme of imbalanced investment
was a struggle that was particularly difficult for navigators. The navigators felt a tension between being an advocate for patient autonomy on the one hand, and feeling personally responsible to promote patient decisions consistent with guideline-concordant care on the other hand. Navigators gave multiple examples of how deeply vested they became in their individual relationships with patients. Yet the navigators worked with multiple different patients simultaneously, in a cancer care setting that almost universally sent the message of “fighting cancer” by promoting evidence-based treatment protocols. Therefore, when navigators encountered patients who opted to go against medical advice, they struggled with how to continue to support the patient’s decisions. To the navigators, these patients sometimes seemed less vested in their cancer care than the navigators themselves.
Themes of Struggles in Patient Navigation
One dyad exemplified the struggle of imbalanced investment. A patient with breast cancer had a mastectomy, but opted out of hormonal therapy because she believed it would increase her risk of a myocardial infarction (MI), and she feared an MI over anything else. From the patient’s interview, this was not a difficult decision for her. She was comfortable with having a mastectomy alone. She gave no indication of any realization that the navigator was struggling to continue his support of her decision. The navigator described the process he went through, first wanting her to speak with her oncologist, then trying to change her mind, and finally reconciling her decision with his role as a supportive advocate (, Dyad #7).
Struggles of Patient Navigation
In another example highlighting the theme of imbalanced investment, the navigator struggled to reconcile the patient’s decision to opt out of treatment with her own belief in standard medical treatments. The navigator had feelings of anger toward the patient that she recognized as misplaced. The patient was too overwhelmed by the care of her chronically ill daughter to focus on her own medical needs. The patient said little in her interview, and nothing about her decision to stop treatment for breast cancer. Instead it was from the navigator’s interview that we learned how the patient “decided after one chemo treatment that she didn’t want anymore of the drugs into her body…she wanted to leave the rest up to God” (, Dyad #12).
Another category of struggles in patient navigation was relational amelioration. In the dyad that best exemplified this theme, we witnessed that the struggle had two layers. From the patient’s interview we learned that her struggle was the extremely adversarial relationship she had with her oncologist after experiencing a side effect from chemotherapy. She admitted to having little trust in her doctors, and was very angry at the lack of response she got from them. From the navigator’s interview we learned that along with the adversarial relationship between the patient and oncologist, another struggle arose for the navigator in balancing her support for the patient without passing judgment about the patient’s medical provider, and potentially making the situation worse. The navigator had to find a way to simultaneously validate the patient’s feelings without creating more tension in the patient-oncologist relationship (, Dyad # 14).
3.2. Needs Identified
The second set of themes to emerge from our multiperspective analysis underscored what we had already learned in our review of patient and navigator interviews separately [11
]. We found that patients and navigators have general consensus about the most important needs for patients during the course of their cancer care. Patients’ needs as described by patients themselves as well as their navigators were characterized as emotional support, informational support, and accompaniment
(). This in itself was not a novel revelation. However, when we read patient and navigator interviews together as dyads, it became clear that the themes of emotional support, informational support, and accompaniment, while they materialized in all interviews, were characterized rather differently by patients and navigators.
Themes of Patient Needs in Cancer Care
This difference in how patients and navigators described the same need was most obvious in our analysis of the most commonly expressed theme–emotional support. Interestingly, patients rarely expressed emotional support as an initial expectation of navigation, but realized it as an unanticipated, emerging benefit once the relationship with the navigator was forged. While highly valued, patients often discovered their need for emotional support from the navigator “after the fact.” In contrast, navigators often identified emotional support as one of their roles from the beginning of the relationship. Emotional support for some patients took the nonspecific form of “just being there,” “a supportive presence,” or a “comfortable friend” to talk to. For navigators, providing support was seen as part of their job, yet they described a personalized, supportive process that took each individual patient’s unique situation into account (, Dyad #12).
Patient Needs–Emotional Support
For patients, navigation not only offered emotional support to them, but often also to their family when dealing with the patient’s diagnosis of cancer. Many patients were effusive in their appreciation for navigators taking time to connect with other members of their family, and there was the sense that the whole family was receiving navigation. When navigators spoke about patients’ families, they seemed unaware of how much appreciation patients had for the inclusion of other family members. Instead, navigators felt that it was important to learn about patients’ families as a way to gauge the baseline level of support an individual patient might have and to gain insight on needs that the patient might be unable to express (, Dyad # 6). One navigator who worked with a male patient with colon cancer found that her relationship with his wife was her entry point for navigation, “His wife is like his eyes because he can’t see…she’s his arms, his everything for him. I spoke more to his wife than I did to him because he wanted to hurry up and get it done…but I could see that he was very scared.”