Twenty-seven programs were initially identified from the horizon scan. After several team meetings to discuss and review these programs, 11 were selected to move forward to the realist evaluation. Programs were excluded when team members felt the program did not meet the criteria outlined in Box 1.

Twenty-three participants were interviewed from the selected 11 navigation programs, which operated in five Canadian provinces. They represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: Navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. Figure 1 depicts this final theory and its associated components (context, mechanism, and outcomes).

Fig. 1

Final program theory and its associated components (context, mechanism, and outcomes). The final program theory relates to those components of innovative community-based navigation programs that help them address the needs of individuals affected by life-limiting illness and their families as they approach end-of-life

Context

The context at multiple levels is germane to how navigation programs operate and how they improve client outcomes. At the broader infrastructure (system) level, participants discussed how navigation programs address gaps in formal care services that are unable to tailor their services to client needs. In fact, many participants felt their programs existed due to gaps in primary care, which would ideally fulfill a navigation function. This was highlighted by the following two participants, who said:

I think because of the, the coordination that can happen, it really does fill a gap more than anything because…I can give you an example. … As a system navigator, I have many patients where they, they need something but the barrier to them accessing it to me feels very ridiculous. So for example, I work very closely with a palliative patient who is homebound but frequently needs all kinds of stuff. Like they were involved in the internal medicine rapid access clinic and they ordered all these tests and things… Obviously, she doesn’t drive. She barely walks. Her partner can’t get her to these appointments, just even… like I arrange transportation but even getting somebody at the hospital to get her out of the transportation and you know the 20 feet to the ____clinic was a challenge and there was basically this appointment was just not going to happen because there was nobody to be able to do it and because I, you know, because I exist, this position exists, I’m able to say, ‘you know what, I’ll meet transport there and I’ll do it and I’ll facilitate access’ because this patient needs to have this special lens. They need to have these tests done and if nobody else can go then I’m gonna go. But what a huge gap, right? To say, okay, okay you know you have to be able to walk into the building or and then the only other option is what she would normally do and that would be to call an ambulance because she, you know, that’s the way to get to the hospital. The cheapest [way] is to call an ambulance and that was her plan. She was like ‘well I’ll just call an ambulance. They’ll take me.’ And I’m like ‘well no, that’s not a good use of healthcare dollars either.’ So I think that [this program] has the potential to fill some of the gaps that exist. [Participant 5]

In some ways, we’re filling that gap, you know, that gap right now in particular as our human resource group, primary care, is challenged. We certainly fill that gap where patients don’t have to fall through a gap. [Participant 7]

Participants also described strong relationships and high levels of trust with organizations who complement their services. This included community-based organizations, home and continuing care, paramedicine, social work, and specialist (e.g., organ failure) clinics. As stated by one participant:

So, the other people that we link with, they’re not officially part of our team but we really engage our stakeholders. We engage the special patients program at [Emergency Health Services], we engage our partners at continuing care, um, we engage with the rehab clinic. So I think the other thing that [we do] is to say ‘What are our community resources that can help our patients be cared for?’ [Participant 7].

In fact, participants described how their programs were highly regarded across community and health sectors. For example, many community-based navigation organizations described having exceptional integration with individuals and programs in the formal healthcare system. As a result, program staff were aware of available services and supports and able to refer their clients who needed these in a timely manner. Moreover, the high regard they experienced allowed them to find solutions alongside other community services. As one participant said:

The volunteers become quite expert in knowing what some of the organic resources are in their community. Who delivers groceries, who has driving services, who has pastoral visiting programs, what are some of the unique programs we have in this community? And then as they work with their client over time, they connect them to those services. So, in one rural community, for example, a woman in a wheelchair needed to see a lawyer but, believe it or not, there was not a single lawyer in that community that had wheelchair access. So, [the program] worked with the lawyers in the community to do a home visit, to make sure they realized they weren’t wheelchair accessible. So, just really practical kinds of things that make all the different to health care, but health care people don’t typically have the time or the energy to resolve. [Participant 3]

Despite strong relationships with health and community-based services, participants from more than half of the navigation programs expressed suboptimal relationships with primary care, and felt that stronger relationships with primary care would help them better serve their clients.

They’re getting better but it’s still not the way it should be. We should be a referral, like chiropractic or massage or blood work to be honest with you. That’s our goal, that’s our mission … to actually get prescription pads in every primary care office, every doctor’s office, so that they know there’s a support system and it’s just a matter of doing the referral and getting it sent to us and us contacting those [clients]. [Participant 1]

At the organizational level, participants discussed three key elements that ultimately enable them to meet their clients’ needs. First, staff were given the flexibility to personalize care so that they address individualized client concerns and preferences. These organizations recognized that there is no one-size-fits-all solution for addressing the needs of persons with life-limiting illness, and that staff need to adapt and tailor their practices as required. As described by one participant:

I think that’s another huge benefit of the program, is that we work a lot in the grey. There’s no black and white in our life. Because if we did it that way, it just wouldn’t work. So it’s very flexible. It’s, like I said, back to the patient-centred type of care that … You know, what works for one person doesn’t work for another. And sometimes we need to bend and flex and change the rules a little bit, or make up our own rule this way, or whatever, in order to help things move along.” [Participant 8].

One example of this flexibility is home visits. Participants described how visiting clients in their homes are an important part of several programs, preventing unnecessary and inconvenient travel on the part of the client and allows staff to ensure a client’s home is set up to safely and effectively support them. One participant described it like this:

Clinicians have also said that it’s very helpful to have volunteers be the eyes and ears of the health care team in the person’s home. So … in the context of people who were just recently discharged from hospital, we made it a priority that the volunteer … would need to go back into the home within two days of the person being discharged. There was a lot of discussion about what’s the right time, so we need someone to have enough time to settle and get back home but we also want to make sure that the supports that the person needs when they transition from home from hospital are there in a timely way, and that having the eyes and ears in the home can sometimes support and help prevent them from going back to hospital right? [Participant 4]

Second, participants emphasized the careful and thoughtful approach of their organizations upon hiring staff and recruiting volunteers to ensure the program encompasses people with the right “fit” in terms of skillsets, knowledge of the local context (i.e., additional services and supports that could be leveraged to support clients), and personal values that are aligned with those of the program. In fact, many expressed that hiring and recruitment practices were essential to developing teams that are able to collaboratively and effectively work together for the benefit of clients. As one participant said when asked about their program’s success:

Just the team that we have. There’s a very strict selection process for the people who join the team. It’s certainly not for everybody. It’s a really different way of practicing. And, so I think that really helps to facilitate the success of the program. [Participant 8]

Participants further described the selection of staff and volunteers as being highly tailored to the needs of the program and its clients. For example, participants from some health system-based navigation programs discussed only hiring staff with prior experience working in the community and knowledge of community-based health and social services. Similarly, participants described how several of the navigation programs are connected to, and leverage volunteers from, established hospice programs and organizations that have well-developed policies, procedures, and training programs. Many of these volunteers are selected because they are retired healthcare professionals who have experience with similar client populations.

Third, organizations provide clients direct access to supports by ensuring they have a contact person so that clients know they are able to access this person and get a timely response/action. One participant described it like this:

Well, I think the knowing … As I said, we always say you are not alone. So, most people typically have a Monday to Friday, 8 to 4 job. And we try and stay connected, which means we use our social media. So, if there’s a message that comes on social media, and it’s something that needs addressing right away and can’t wait, then of course we do that. So, it could be 7:00 on a Friday night, and we’re responding to emails or to Facebook messages. Even when I was away on vacation, I was still triaging my emails. So, I think to know that they’re not alone, to know that we’re there to help. I think knowing that if there’s questions that need answers, that we will help them find them. I think just the kindness, the compassion that comes out within the staff as well. The open-door policy. There’s a lot that I think really makes this program what it is.” [Participant 10].

At the interpersonal level, participants described their programs as comprised of effective teams of problem solvers who have complementary skills that allow them to meet client needs. As one participant stated, they take an “all hands-on-deck approach” [Participant 10] to meeting their client’s needs. Many discussed how their different perspectives and roles allow them to think through and create personalized solutions to client issues. As said by one participant:

That was an interesting, eye-opening learning for me because the [team] huddle sort of forces the team to come together in a way, and look at one patient at a time, and to engage in an interprofessional discussion about that one person. And I think that the patient benefits from having multiple lenses looking at, you know, some of the issues that they’re bringing up in their report.” [Participant 4].

Participants also discussed how they often operate as ‘teams of problem solvers’ across organizations, given their strong relationships.

We are a social service agency … [yet] we’re able to collaborate with hospital staff very easily because we have the connections, we know who to call. So definitely, in that case, that helps the program a great deal. We do have services. We have personal support services, housekeeping, that sort of thing. So, we were able to leverage some of these resources to help people in the community through this program. [Participant 17]

At the individual level, participants discussed how staff value taking the time necessary to build relationships with clients and advocate for client and family needs. In fact, they discussed how their programs allow them to be relationship-focused versus task-focused, enabling them to know their clients in a more holistic way. As described by one participant:

Home visits, that’s probably one of my, that’s probably my favourite part of my job. So every opportunity I get, I really do take it. … By me being there and being able to chat to them, talk about the pros and the cons, or completely go off subject and talk about family while [colleague is] setting up the equipment, it really seems to eliminate some of that stress and anxiety that they have. So that is one of our key parts of my position … I’m going to come over for a visit and stop for coffee, and I’m going to drop off some stuff for you. So, it really is a key component to our program. If I’m able to take one thing off their plate, whether it be make a phone call or just come down and visit, anything to make their lives easier, their quality of life easier, whether it be for our client or our family, that’s kind of where our mindset is. … So the relationship really evolves. And I find over time, the relationship, it no longer becomes a [service provider-client] kind of relationship. They really let us into their hearts, their homes at the most difficult time, and teach us so much about life ourselves. [Participant 10]

Finally, participants from all programs expressed pride in, and fulfillment from, their programs and what they are able to accomplish. One participant expressed it this way:

I can say this is one of my favourite jobs that I have ever had. You’d never hear me groaning getting out of bed in the morning, going, ‘oh my goodness, I have to go in to work.’ … There’s things that I’ve taken from each and every one of our clients that I’ve somehow implemented into my own personal life. And one of the reasons for this job was if I could make a difference in just one person’s life, then I’ve done my job. So that’s kind of my question of the day when I’m getting ready to go home, saying, ‘okay, did I make an impact, did I take just one thing off of somebody’s plate today, and was I successful doing so?’ And if I answer yes to that question, I’m like, okay, then I’ve done my job. So I always check myself for that towards the end of the day, and say, ‘okay, what did I do today that really made that difference?’ And I haven’t had a day where I’ve had to go home and say, no, I did not do that.” [Participant 10].

This job satisfaction often kept the motivated and energized as they worked within a complex system, and often with limited resources, to support the varied needs of clients with life-limiting illness.

Mechanisms (resources and reactions)

Within this context, well trained staff and volunteers, and sufficient financial resources, were deemed necessary to deliver services as well as to evaluate their impact on clients. In this study, most programs spent considerable time training paid staff and volunteers. Participants from programs that were connected to hospice organizations described how many of their volunteers have already undergone training on how to work with/care for people who are nearing EOL, and are given additional training on navigation skills. High quality training was perceived as a key component toward creating an environment wherein staff and volunteers have the confidence and ability to help clients manage their multitude of needs as they near the end of life.

Volunteers that are connected with hospice, they go through a huge training. So they have, they have a lot of knowledge. … I think this is the big difference, like a hospice volunteer is aware of all the needs. Like, spiritual care needs, like social needs, those needs that no one else looks at, like they will pay attention. The health care provider will pay attention to the pain, will pay attention to whatever is happening, and not about these other parts that our volunteers could probably be a good helper in identifying and in connecting with the resources in the community. So this is the main thing.” [Participant 2].

The funding structure for programs differed widely, including government, grant, and donor funding models (and sometimes a combination of these). Nonetheless, most (8/11) programs described limited and unsustainable funding, impeding their ability to deliver services to their client base and sometimes creating an uncertain environment for staff and volunteers. As one participant said:

We have not continued to have incremental funding. So, I think what it has required us to do is to actually … with every person who’s left, the team has to really carefully evaluate in terms of do they need that position where it is, is there a need, is there a greater need somewhere else? Do we actually need that person or do we need somebody else? So, I think they have been very good at looking at that. But we still have areas of the province where they have small programs or would like to see a further expansion where we’ve not been able to carve out funding to actually enable that. So it is an ongoing dance in terms of looking at, you know, your budget.” [Participant 9].

As a result of the context and resources provided, participants described staff who are empowered to be person-centred in their approach and to tailor care to clients’ needs. In fact, participants described staff as feeling largely supported in their roles, as described by one participant:

[This job] can be physically demanding, both emotionally and mentally. … Like I said, the Board and [my supervisor] have been very, very understanding with that, and I think they notice the need. So whenever a staff member is coming in and they’re feeling a little overwhelmed or they need to talk or need a personal day, sometimes they’ll just come in and go, ‘Don’t come to work on Friday. Take a long weekend and enjoy it, and we’ll cover everything for you.’ So that really makes my job easier. And I think the flexibility of it too. … Again, I think that goes hand-in-hand with the organization: the compassion that we show for our staff as well as for our clients and their families. It’s a wonderful organization to work for. [Participant 1]

These supportive settings enable staff to take the time necessary to build relationships with clients, provide emotional support, and advocate for access to needed medical and community services, equipment, and other supports.

Outcomes

Participants from all programs described tangible client outcomes from the services they provide. Namely, all participants discussed how their program improves access to the information, equipment, and services that their clients need as they live with life-limiting illness. As one participant stated, “bringing the services to patients in their home greatly impacts their access to the healthcare” [Participant 8] Another described their program impacts like this:

So, I would say that the participants really liked the program. They benefited in a number of different ways, they were saying like, aside from the fact that it did result in some positive health outcomes, you know more physical activity less hospitalizations etc. From a qualitative [point of view], the clients felt that it met needs like, you know, the need for social support, it met the needs like developing a stronger link to their health care team, it met a need around timely services. [Participant 4]

Participants also discussed increased client activation and personalized care, fewer unmet emotional needs, and prevention of health crises. Participants from four programs, which had conducted formal evaluations, discussed how the program decreased health service utilization, including emergency department visits and hospitalizations. Three of these programs had also demonstrated a reduction of costs due to lower acute care utilization.

[We] were having a positive impact because we did do surveys and they did do, um, have data on emergency room visits decreasing, and improvements in the number of patients who had advance care planning completion, and patient satisfaction surveys. … [A later evaluation showed that] by enhancing patients’ confidence to manage their illness in their homes and communities, there was sustained and substantial reduction in hospital-based care, shown to prevent emergency visits, reduce hospitalizations and length of stays. And it was also shown to reduce reliance on acute hospital admissions for end of life care. [Participant 9]