During this project's study period, 42 transcripts of patient exit interviews were completed and transcribed. We reached data saturation after analysis of 35 interviews.
3.1 Participant characteristics
Nineteen of the 35 participants had been randomized to navigation. Twenty-eight individuals had completed treatment for breast cancer (all female), and seven had completed treatment for colorectal cancer (four female). Most participants were white (79%) and insured (74%; approximately half (38% of the insured patients had Medicare and/or Medicaid insurance). Reported annual income was similarly distributed between navigated and on-navigated participants and ranged from less than $10,000 to $60,000 (data not shown). Race, ethnicity, marital status, and employment status were similar between navigated and non-navigated participants, and also did not differ from the larger study population. Among navigated and non-navigated participants, 63% and 39%, respectively, had completed some college or beyond.
3.2 Participant expectations of patient navigation
3.2.1 Instrumental needs
The most common expectation of navigation described by participants was the addressing of instrumental needs, particularly information-giving (expressed by 24 participants -- 10 navigated, 14 standard care). Participants' expectations about receiving information about cancer-specific topics (e.g., how to arrange tests and appointments), addressing financial stressors, and managing insurance issues was a major concern (n=14), split fairly evenly between those randomized to navigation (n=8) and usual care (n=6). When first hearing about the navigation program, patients commonly hoped for concrete assistance with transportation in order to keep appointments (nine participants:six navigated, three non-navigated) and with finances or insurance coverage (14 participants:seven navigated, seven non-navigated). For example, a 57-year old navigated breast cancer patient described her need for help with insurance (see , Quotation 1). For some patients, instrumental needs included simply knowing what to expect, as one non-navigated breast cancer patient explained (see , Quotation 2):
3.2.2 Emotional support
Participants frequently discussed expectations regarding emotional support (14 participants: five navigated, nine non-navigated participants). Participants often described feeling overwhelmed at multiple occasions during their cancer care and, as a result, had the expectation that navigators would be a source of comfort and support to help them in times of distress. The support from an uninvolved person was often considered particularly salient, as a 72- year old navigated breast cancer patient reported (, Quotation 3). Some patients linked the apparently instrumental need for information with emotional needs, as an older non-navigated breast cancer patient commented (, Quotation 4):
3.2.3 Nonspecific expectations
In many instances (n=19, 10 navigated, nine non-navigated), participants were either unable to articulate specific expectations or provided general, nonspecific responses to questions about their expectations of navigation. In some instances, patients felt that they needed assistance with “everything” due to the overwhelming nature of a cancer diagnosis, as a younger navigated breast cancer patient described (, Quotation 5).
Other expectations for navigation included coordination of care (n=12, six navigated, six non-navigated), advocacy services (n=11, four navigated, seven non-navigated), having someone present or available throughout the cancer-care process, e.g. “being there” (n=9, five navigated, four non-navigated), and helping the participant to become activated in managing their care (n=8, two navigated, six non-navigated).
Among the participants with colorectal cancer (n=7, three navigated, four non-navigated), expectations were mostly for information. These participants less frequently discussed financial or transportation issues or becoming more involved in their care. Among our small number of male participants (n=3, all with colorectal cancer, one navigated), the expectations for navigation centered on information and emotional support -- similar to the overall sample. Also, male participants briefly mentioned expectations related to coordination of care, transportation, and availability to answer questions.
3.3 What are the most effective (i.e., meaningful or valuable) aspects of navigation?
3.3.1 Emotional support
Among the 19 navigated participants, the most commonly expressed, highly valued navigator functions encompassed themes of emotional support (n=17), “being there” (n=14), and information-giving (n=13). Although few navigated participants mentioned emotional support as an initial expectation of navigation, emotional support was mentioned as a strongly valued aspect of navigation by nearly all navigated participants. A younger breast cancer patient (, Quotation 6) illustrates the importance of emotional support. Emotional support was important even for patients who had other forms of social support or family involvement in their care, as a 37-year-old breast cancer patient described (, Quotation 7).
What are the most effective (i.e., meaningful or valuable) aspects of navigation?
3.3.2 Being there
Having the navigator “be there” for patients was infrequently mentioned as an expectation (five navigated patients) but was commonly mentioned as a valued aspect of navigation (14 of 19 or 74% of navigated participants). “Being there” was variously described as a form of emotional support provided by having the navigator as a comforting presence, a source of social support, or as a buffer against isolation or loneliness. The presence of the navigator as a source of comfort and emotional support was highly valued, especially when confronting the shock of the initial diagnosis, having to process information and understand treatment options, and having to coordinate complex treatment plans. An example of “being there” is discussed by an older breast cancer patient (see , Quotation 8).
In other instances of “being there,” navigated participants described the theme of meaningful navigation as embodying personalized, comprehensive, accessible continuity of care for them throughout the cancer care process. Examples of this form of “being there” consisted of having the navigator attend office appointments, visit them in the hospital, link them to community resources, and represent a preferred alternative to family members in discussions about their cancer or treatment plan.
3.3.3 The navigator as an “insider.”
Having a navigator as someone with personal knowledge of the participant's overall life situation, while also having direct linkages as an “insider” to the health-care system, helping them through administrative challenges, offering security, comfort, or peace of mind by simply knowing that the navigator was there as a resource, “checking in” with calls or informal visits, were all described by participants as examples of “being there.” These examples, while certainly related to feeling emotionally supported, also encompassed activities, roles, or relationships that the participants highly valued in their navigators, as illustrated by a middle-aged breast cancer patient (, Quotation 9). “Being there” allows the navigator to be well integrated into the care cancer care process, exemplifying how navigation was meaningful throughout the cancer treatment course (see , Quotation 10).
3.4 Negative experiences with navigation
Five participants mentioned negative experiences with navigation. (Each of these same five participants also provided in-depth examples of positive experiences, represented in the sixteen above.) The negative experiences were related to gender (specifically, discomfort with having a male navigator assigned to a female breast cancer patient mentioned by three patients), interruptions in continuity of the navigator-patient relationship (in one instance, due to reassignment of a navigator), the experience of distance (actual and relational) between the navigator and a patient, and lack of accessibility (specifically, a failure of the navigator to call a patient back promptly). These negative experiences all made it difficult for these patients to articulate their cancer needs, have an emotional connection with the navigator, and have the navigator present in their care. Thus, these negative experiences also provide indirect support for the most highly valued elements of navigation we discovered: instrumental services, emotional support, “being there”, and being an “insider.”
3.5 Barriers and cancer care needs that were not addressed
In general, cancer-care needs not addressed or met were described much less frequently (n=17, eight navigated, nine non-navigated). The unmet needs related to cancer care for navigated patients consisted of transportation (cited by three participants living outside the city), financial burdens (n=2), more extensive sources of social support (n=1), and the wish that the navigator had been involved sooner in cancer care (n=1). In many instances, the navigated participants initially reported examples of unmet needs that eventually resolved through the process of navigation or through other sources of support.
Commonly expressed unmet cancer-care needs for non-navigated participants included themes of feeling isolated, lacking in social or emotional support, and not having someone to talk to or help process information (n= 5). These unmet needs tended to persist throughout the cancer-care period.
Three non-navigated participants felt they did not get the information they needed about aspects of their cancer care or treatment plan–specifically, on side effects, treatment options, or treatment course. Two non-navigated participants had unmet needs related to financial assistance, and another described inadequate home nursing visits. One non-navigated participant extensively and vividly described several unmet needs related to coordination, activation, and advocacy for her cancer care.
Overall, 46% (n=16, five navigated and 11 non-navigated) participants described a negative cancer-care experience related to communication difficulties, lack of understanding or agreement with the treatment plan, lack of coordination of cancer care, loss of trust, or negative attitudes of health-care professionals. Examples of negative experiences encompassed themes of frustration with being unable to readily contact offices for appointments or questions, delays, difficulties with transportation, feeling as if “everything was coming way to fast”, inefficiencies with coordination of care, and communication problems with physicians or other cancer-care health professionals. In four-out-of-five instances in which navigated participants discussed negative cancer-care experiences, they also described how the navigator helped them in the situation. In the fifth case, the participant did not feel she could relate to the navigator as a person. That participant also described several instances of negative experiences in her cancer care. In contrast, for non-navigated participants, the aforementioned negative experiences with cancer care remained unresolved in the majority of instances.