Background
Nav-CARE was developed and refined through several pilot studies [35, 36]. Building upon the pilot work, the goal of this study was to better understand the implementation factors that influenced the development of Nav-CARE in eight diverse Canadian contexts. In a related paper, we describe the outcomes of Nav-CARE [Authors in review].working in collaboration with patients, families, and communities to: a) negotiate the ‘best fit’ for the needs of persons, their families, and communities and resources; b) improve access to needed services and resources at the end of life (including death) and bereavement; and c) promote quality of life, foster independence, and facilitate community connections utilizing a culturally safe, palliative approach ([34] p. 1).
Methods
Approach
Knowledge creation
Planned action cycle
Participants
Site | Population | Distance to Urban | In-patient hospice beds |
---|---|---|---|
1 | 9000 | 60 | No |
2 | 48,000 | NA | Yes |
3 | 10,000 | 350 | No |
4 | 150,000 | NA | Yes |
5 | 5000 | 60 | No |
6 | 12,000 | 90 | No |
7 | 19,000 | 400 | No |
8 | 10,000 | 400 | No |
Data collection and analysis
Baseline | Midpoint | Endpoint | |||
---|---|---|---|---|---|
Individual (n) | Focus Groups (n) | Individual (n) | Focus Groups (n) | Individual (n) | Focus Groups (n) |
NA Not part of study protocol | 8 focus groups with 55 stakeholders | H = 1 VC = 9 V = 4 P = 9 F = 2 | NA Not part of study protocol | VC = 4 V = 22 P = 12 F = 10 | 5 focus groups with 16 stakeholders |
Older Person Quality of Life Concerns | Family Quality of Life Concerns | Navigator Quality of Life Focus |
---|---|---|
1. Pain levels and other symptoms (E.g. SOB, confusion, dizziness etc.) 2. Changes to eyesight, hearing, and taste 3. Energy levels 4. Concerns for family and pets 5. Financial matters 6. Relocation/housing 7. Companion and/or assistance with groceries, shopping 8. Treatment side effects 9. Healthcare professionals 10. Own or others’ accomplishments 11. Faith/spirituality 12. Outlook on life and death 13. Uncertainty of illness trajectory 14. Special occasions/Visits/Trips 15. Home healthcare products/devices 16. Level of independence 17. Home and vehicle maintenance 18. Meals and food choice 19. Homecare 20. Advance care planning/future planning 21. Issues with elimination (e.g. incontinence, bowel irregularity) 22. Weather 23. Ability to participate in recreation/hobbies 24. Spousal or family illness 25. Physical therapies and complementary therapies 26. Relationships/Friendship 27. Phone and TV connection 28. Mobility 29. Transportation 30. Direct care needs 31. Mental health 32. Caregiver respite 33. Meaningful connection and reflection | 1. Respite time 2. Caregiver burnout 3. Supporting client’s changing needs 4. Keeping realistic expectations 5. Interpersonal conflict 6. Too many people involved in client’s care 7. Emotional impact of caregiving 8. Social isolation 9. Future planning 10. Financial concerns 11. Concern about client’s symptoms/illness 12. Managing or accessing help with household chores and errands 13. Concern for client’s care arrangements 14. Balancing own health concerns with caregiving 15. Anticipatory grief 16. Finding appropriate resources/answers from HCPs 17. Transportation 18. Self-care | 1. General social support 2. Access to home medical equipment and supplies 3. Financial assistance 4. Transportation 5. Easy access to appropriate healthcare personnel and medications 6. Open communication/planning for end of life 7. Companion or other solution for outings or errands 8. Ability to participate in hobbies 9. Assistance with maintaining home 10. Better symptom control 11. Support for/knowledge of client’s specific condition 13. Ability to “get out and about” 14. Mental health support 15. Means to communicate (e.g. phone line) 16. Assistance with meals 17. Emergency/short notice contact 18. Meaningful connection/source of meaning-making. |
Barriers | Successes | Learnings |
---|---|---|
➢ Family and client tensions ➢ Lack of a perceived need for navigation ➢ Difficulties contacting clients or arranging visits ➢ Finding resources, particularly financial ➢ Client symptoms that influenced engagement with navigation ➢ Uncertainty of the illness progression ➢ Emotional impact of long-term relationships with clients. ➢ Managing boundaries | ➢ Enhanced client motivation and independence ➢ Ease of navigator/client relationship (friendship development) ➢ Facilitating connections with client’s family ➢ Open and honest communication, including discussions around bad news, illness trajectories, and advance care planning ➢ Legacy conversations (i.e., documenting client’s life story) ➢ Connecting clients with community resources | ➢ Client’s support needs will fluctuate alongside their illness ➢ It is not easy to find resources/answers ➢ Clear boundaries are integral to the success of a navigator/client relationship ➢ Frequent and consistent visits and/or check-ins make the navigation process “richer” ➢ Families can identify issues that clients may not ➢ The client/navigator relationship is highly relational and personally impactful ➢ The navigator role is often one of the “friendly visitor”; listening and being present are key |
Results
Baseline organizational context
Fit with long term vision
A compassionate community approach
“We are more than just the four walls. I am envisioning that the program will be so well known in the community that someone will think ‘oh so and so is having difficulty getting around and life is becoming tough’ and they will think of this program just like they think of hospice when someone is dying.” (H)
Anticipated resources and barriers
Contextual factors that influenced Nav-CARE outcomes
Coordinator champion
Well, it goes back to the very beginning with just trying to find the person in the Health Authority who could connect and begin to try and collaborate with … for referrals and to see where the program would best fit and how we could work together. There was just resistance, almost animosity, even when I would approach nurses, the palliative care nurses, social workers, even our healthcare partner. At first there seemed to be a lot of excitement, but then it was just pull … with the palliative care program it sort of seemed like they just right away were, this isn’t a program for us, go see this person. And I’d go see that person and it would be, go see this person, and it kind of went on like that … So, there just didn’t seem to be even an interest to learn about it. It sort of was more than resistance. (VC)
Organizational capacity and connections
Recruitment
Had we picked somebody, a healthcare partner that was actually more invested or integrated into the health authority, then that might have been a little bit easier. But it didn't seem like any of the physicians or anybody in the palliative care world out here were really open to even thinking about giving this as an option, and I know that was a really big frustration for us. (VC)
In some communities, the professional support people, like homecare nurses, social workers, can be very possessive and territorial. They don't feel that a volunteer is appropriate, that it's almost as if the volunteer is taking over their job, which is really a shame because in most cases they work really, really well together. (V21)
We utilized doctors’ offices, but we didn’t have a lot of buy-in. Our healthcare partner, our social worker was excellent. She referred 3 of the present clients that we have. And I obtained the others through basically word of mouth about what we were doing. So, I don’t know what the actual strategic plan would be to actually recruit [laughter] … just putting posters up didn’t seem to do it. I would like to get more buy-in from the physicians, personally. (VC)
Why are we not talking about the role of a volunteer in palliative care? Because I think that would … that would make it easier. It would give us an open door to begin discussions with healthcare … And so, not just us as the [Hospice Association] going in and doing a presentation or the university going in and doing a presentation about NAV-Care. Even a bit farther upstream, where do we fit in the role of the volunteer in quality palliative care?(VC)
Volunteer preparation and mentorship
“I came out of the training feeling like the volunteers were going to be asked to give advice on things and that’s something I wasn’t really comfortable with. Where is that line between a volunteer visitor and a volunteer navigator? What exactly is being asked of these volunteers and is it something that they’re comfortable with?” (VC)