Background
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∙ Palliative care is available from multiple service providers.
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∙ Healthcare professionals, communities, and the public are aware of palliative services.
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∙ Those requiring palliative care have unrestricted access to adequate pain and symptom management.
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∙ Policies, guidelines, strategic plans, and national palliative care associations address palliative care.
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∙ Research partnerships exist between practice and academic centers to monitor integration progress.
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1. Raise awareness and understanding of how advance care planning and palliative care can improve quality of life until the end of life;
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2. Support health system quality by improving palliative care skills and support for health care providers, families, caregivers, and communities;
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3. Support health system quality improvement through enhanced data collection and research;
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4. Foster improved access to palliative care for underserved populations;
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5. Improve access to culturally sensitive palliative care for Indigenous communities.
Methods
Design
Data and measures
Sample and recruitment
Quantitative analysis
Overall perceptions of improvement by domain
Comparisons of Geographic regions and urban and rural areas by items
Qualitative analysis
Results
Professional Background | n (%) |
---|---|
Nurse | 59 (39.3) |
Other (e.g., leadership positions, hospice employees, administrative roles, volunteers with professional background other than listed) | 36 (24) |
No professional background | 11 (7.3) |
Social Worker | 9 (6) |
Physician | 8(5.3) |
Nurse Practitioner | 4 (2.7) |
Occupational Therapist | 2(1.3) |
Pharmacist | 0 (0) |
Missing | 21(14) |
Primary role in palliative care | |
Specialized palliative care provider (adult population) | 58 (40.6) |
Volunteer | 26 (18.2) |
Other (e.g., educators, executive directors, volunteer coordinators, spiritual care) | 24 (16.8) |
Non-specialized palliative care provider (e.g., community health nurse, family physician) | 16 (11.2) |
System level decision-maker/leader for palliative care or palliative approach to care | 14 (9.8) |
Researcher | 5 (3.5) |
Specialized palliative care provider (pediatric population) | 0 (0) |
Missing | 7 (4.7) |
Do you have education in specialized palliative care or in a palliative approach to care? | |
Yes | 99 (66) |
No | 23 (15.3) |
Unsure | 8 (5.3) |
Missing | 20 (13.3) |
# years working/volunteering in palliative care | |
1–4 | 25 (16.7) |
5–9 | 29 (19.3) |
10–14 | 27 (18) |
15–19 | 13 (8.7) |
> 20 | 33 (22) |
Missing | 23 (15.3) |
Province/ Territory work in | |
British Columbia | 33 (22) |
Alberta | 14 (9.3) |
Saskatchewan | 7 (4.7) |
Manitoba | 4 (2.7) |
Ontario | 37 (24.7) |
Quebec | 3 (2) |
Prince Edward Island | 6 (4) |
Nova Scotia | 9 (6) |
New Brunswick | 10 (6.7) |
Newfoundland/Labrador | 4 (2.7) |
Northwest Territories | 1 (0.7) |
Nunavut | 0 (0) |
Work in more than one province | 3 (2) |
Yukon | 0 (0) |
Missing | 19 (12.7) |
Geographic area (one or more answers possible) | |
Urban (> 100,000) | 63 (37) |
Small urban (10,000 to 99,000 population) | 50 (30) |
Rural (< 10,000 population) Remote | 33 (19) 2 (1) |
Missing | 21(12) |
Survey domain analysis
Education | Family Caregiver | Community Capacity | Access | Research and Data Collection | |
---|---|---|---|---|---|
Mean domain score (SD) | 16.9 (3.3) | 18.5 (4.3) | 13.4 (2.2) | 32.6 (4.8) | 12.9 (2.5) |
Total possible domain score | 25 | 30 | 20 | 50 | 20 |
N | 104 | 110 | 109 | 73 | 82 |
Urban Mean (SD) Median (IQR) | Rural Mean (SD) Median (IQR) | p-value | |
---|---|---|---|
Education | 16.48 (3.14) 16.0 (15.0–18.0) | 18.38 (2.84) 18.5 (16.3–19.3) | 0.039 * |
Family Caregiver | 17.82 (4.28) 18.00 (14.3 -20.8) | 19.55 (3.66) 21.5 (18.8 -24.3) | 0.095* |
Community Capacity | 13.13 (2.29) 13.0 (12.0 -14.0) | 13.83 (1.95) 14.5 (14.0 -15.0) | 0.278 |
Access | 31.75 (5.02) 31.5 (28.3 -34.0) | 34.69 (3.17) 37.0 (34.3 -37.8) | 0.021* |
Research and Data Collection | 12.33 (2.35) 12.0 (12.0 -13.8) | 14.08 (1.93) 15.5 (13.5 -16.0) | 0.023* |
BC Mean (SD) Median (IQR) | Prairies Mean (SD) Median (IQR) | Ontario Mean (SD) Median (IQR) | Maritimes Mean (SD) Median (IQR) | p-value | |
---|---|---|---|---|---|
Education | 17.17 (4.15) 19.5 (17.8 -20.8) | 16.63 (2.92) 19.5 (17.5 -20.0) | 17.13 (2.71) 16.0 (14.0 -18.0) | 16.62 (3.38) 16.0 (14.8 -17.3) | 0.808 |
Family Caregiver | 17.88 (3.55) 20.5 (18.3 -22.0) | 18.84 (4.10) 20.0 (19.0 -24.0) | 18.00 (4.24) 16.0 (12.0–18.5) | 18.64 (4.49) 18.5 (13.8–21.0) | 0.916 |
Community Capacity | 13.55 (2.87) 14.5 (13.3 -15.8) | 13.00 (1.86) 15.0 (12.3–15.0) | 12.88 (1.52) 13.0 (12.0–13.0) | 13.71 (2.63) 13.0 (12.0–14.0) | 0.345 |
Access | 32.83 (5.80) 37.0 (34.0–38.5) | 32.57 (4.16) 35.0 (31.5 -39.3) | 32.39 (4.39) 32.0 (29.5–34.5) | 32.44 (5.67) 31.5 (27.5 -34.0) | 0.918 |
Research and Data Collection | 13.63 (2.92) 15.0 (12.5–165.0) | 13.17 (2.23) 14.5 (12.5–15.8) | 12.35 (2.2.8) 12.0 (12.0–14.0) | 12.58 (2.55) 12.5 (12.0 – 13.0) | 0.553 |
Survey item analysis
West | Prairies | Ontario | Maritimes | |||||||
---|---|---|---|---|---|---|---|---|---|---|
N | M (SD) Median(IQR) | N | M (SD) Median(IQR) | N | M (SD) Median(IQR) | N | M (SD) Median(IQR) | p-value | ||
Education Measures | Healthcare professionals trained in palliative care | 32 | 3.2(1.2) 4.0 (3.0 -4.8) | 23 | 3.6 (.7) 4.0 (3.3 -4.8) | 37 | 3.5 (.8) 4.0 (3.0–4.0) | 27 | 3.6 (.8) 4.0 (3.0–4.0) | 0.397 |
Healthcare students trained in palliative care | 20 | 3.7(.9) 4.0 (4.0 -4.0) | 20 | 3.4 (.7) 4.0 (3.3–4.0) | 32 | 3.3 (.8) 3.0 (3.0–4.0) | 23 | 3.2 (.8) 3.0 (3.0–3.0) | 0.211 | |
Education for palliative family caregivers | 30 | 3.3 (.8) 3.5 (3.0–4.0) | 22 | 3.2 (.7) 3.5 (3.0–4.0) | 33 | 3.4 (.8) 3.0 (3.0 -3.0) | 28 | 3.1 (.9) 3.0 (2.8–3.0) | 0.391 | |
Health care professionals’ awareness of the need for early integration of palliative care | 31 | 3.2 (1.1) 4.0 (3.3–4.8) | 23 | 3.4 (.7) 4.0 (4.0–4.0) | 36 | 3.5 (.3) 3.0 (3.0–4.0) | 27 | 3.3 (.7) 3.0 (3.0–4.0) | 0.497 | |
Interdisciplinary opportunities for palliative care education | 30 | 3.1 (1) 3.5 (3.0–4.0) | 24 | 3.2 (.8) 4.0 (3.3–4.0) | 36 | 3.5 (.3) 3.0 (3.0–4.0) | 26 | 3.2 (.9) 3.0 (2.8–4.0) | 0.383 | |
Family Caregiver measures | Formal assessments of family caregiver needs and capacities | 27 | 3.0 (.8) 3.5 (3.0–4.0) | 21 | 3.2 (.6) 3.0 (3.0–3.8) | 35 | 3.0(.9) 3.0 (2.0–3.0) | 27 | 3.0 (.9) 3.0 (2.0–3.3) | 0.864 |
Involvement of family in care planning | 31 | 3.2 (.9) 3.0 (3.0–3.8) | 23 | 3.6 (.7) 3.5 (3.0–4.8) | 37 | 3.4(.8) 3.0 (2.0–4.0) | 25 | 3.4 (.8) 3.0 (2.8–4.0) | 0.392 | |
Use of technology to support family caregivers | 27 | 3.5 (.9) 4.0 (3.0–4.8) | 24 | 3.4(.6) 4.0 (3.3–4.0) | 36 | 3.5 (.9) 3.0 (3.0–4.0) | 25 | 3.6 (.6) 3.5 (3.0–4.0) | 0.569 | |
In-home supports for family caregivers | 26 | 2.9 (1) 3.0 (2.3–4.0) | 20 | 3.1 (1.2) 3.5 (3.0–4.8) | 36 | 2.6 (1.1) 2.0 (1.0–3.0) | 25 | 3 (1) 3.0 (2.0–3.0) | 0.488 | |
Respite for family caregivers | 28 | 2.6 (.9) 3.0 (2.3 -3.8) | 22 | 2.7 (.9) 3.0 (3.0–3.8) | 36 | 2.5(1) 2.0 (1.0–3.0) | 27 | 2.9 (.9) 3.0 (2.0–3.3) | .0461 | |
Access to Bereavement Services | 30 | 3.1 (.9) 3.0 (3.0–3.8) | 23 | 3.1 (1) 3.0 (3.0 -3.8) | 36 | 3.1(1.2) 2.0 (1.5–4.0) | 28 | 3.0 (1) 3.0 (2.0–4.0) | 0.943 | |
Community Capacity Measures | Broad-based community participation in palliative care | 27 | 3.2 (.9) 3.0 (3.0 -3.8) | 24 | 3.2 (.8) 3.0 (3.0–3.8) | 35 | 3.1 (.7) 3.0 (3.0–3.0) | 25 | 3.3 (.9) 3.0 (3.0–4.00) | 0.758 |
Culturally appropriate palliative services and resources | 28 | 3.5 (.8) 4.0 (3.3–4.0) | 24 | 3.3 (.8) 3.5 (3.-4.0) | 35 | 3.3 (.5) 3.0 (3.0–3.5) | 26 | 3.3(.8) 3.0 (3.0–4.0) | 0.419 | |
Public awareness of available palliative services and supports | 30 | 3.3 (1) 4.0 (3.0–4.0) | 23 | 3.4 (.7) 4.0 (3.3–4.0) | 36 | 3.3 (.6) 3.0 (3.0–4.0) | 26 | 3.4 (.7) 3.0 (3.0–4.0) | 0.852 | |
Use of technology to communicate between specialist and community-based palliative care providers | 25 | 3.6 (.9) 4.0 (3.0–4.8) | 20 | 3.3 (.6) 4.0 (3.3–4.0) | 35 | 3.5 (.8) 3.0 (3.0–4.0) | 25 | 3.6 (.7) 3.0 (3.0–3.0) | 0.328 | |
Access Measures | Development of navigation models | 26 | 3.3 (.9) 4.0 (3.0–4.0) | 21 | 3.4 (.5) 3.5 (3.0–4.0) | 32 | 3.4 (.7) 3.0 (3.0–3.5) | 25 | 3.2 (.6) 3.0 (2.8–3.0) | 0.529 |
24/7 access to palliative care expertise | 27 | 3.0 (1) 4.0 (3.3–4.0) | 22 | 3.2 (.7) 3.0 (3.0–3.8) | 33 | 3.1 (.9) 3.0 (2.0–3.0) | 26 | 3.3 (.8) 3.0 (2.0–4.0) | 0.781 | |
Death and dying awareness in non-medical settings | 26 | 3.1 (.7) 3.0 (3.0–4.0) | 21 | 3.2 (.6) 3.5 (3.0–4.0) | 33 | 3.2 (.6) 3.0 (2.0–3.0) | 20 | 3 (.8) 3.0 (2.0–3.0) | 0.467 | |
Uptake of advance care planning | 29 | 3.7 (.7) 3.5 (3.0–4.0) | 23 | 3.5(.7) 4.0 (3.3–4.0) | 37 | 3.6 (.7) 3.0 (3.0–4.0) | 25 | 3.2 (1) 3.0 (2.0–3.3) | 0.270 | |
Strategies to integrate palliative care into other healthcare services | 28 | 3.4 (1) 4.0 (3.3 -4.0) | 24 | 3.3 (.8) 3.5 (3.0–4.0) | 36 | 3.4 (.6) 3.0 (3.0–4.0) | 25 | 3.4 (.7) 3.0 (3.0–4.0) | 0.841 | |
Partnerships between healthcare providers, volunteers, and community | 28 | 3.2 (.7) 3.0 (3.0–3.8) | 23 | 3.4 (.9) 3.5 (3.0–4.8) | 35 | 3.5 (.7) 3.0 (3.0–4.0) | 26 | 3.5 (.6) 3.0 (3.0–4.0) | 0.392 | |
Integration of lay and spiritual counselors into palliative care | 27 | 2.8 (.8) 3.0 (3.0–3.0) | 22 | 3.0 (.8) 3.5 (3.0–4.0) | 32 | 3.3 (.8) 3.0 (3.0–4.0) | 25 | 3.2 (.9) 3.0 (2.8–4.0) | 0.067* | |
Places to die when home is not preferable/feasible | 29 | 3.2 (1) 4.0 (4.0–4.8) | 23 | 3.0 (.9) 3.5 (3.0–4.0) | 37 | 3.4 (1) 4.0 (3.0–4.0) | 28 | 3.6 (.8) 4.0 (3.0–4.0) | 0.124 | |
Services for children living with palliative needs | 16 | 3.1 (.5) 3.0 (3.0–3.8) | 19 | 3.3 (.6) 3.0 (3.0–3.8) | 28 | 3.2 (.6) 3.0 (3.0–3.5) | 22 | 3.3 (.8) 3.0 (3.0–3.0) | 0.879 | |
Awareness of the gaps in palliative care that exist in your community | 28 | 3.3 (.8) 4.0 (3.0–4.0) | 23 | 3.6 (.7) 4.0 (3.3 -4.0) | 33 | 3.4 (.7) 3.0 (3.0–4.0) | 25 | 3.3 (.6) 3.0 (3.0–3.3) | 0.515 | |
Research and Data Collection | Evidence-based guidelines for non-medical aspects of palliative care | 17 | 3.4 (.8) 4.0(3.0–4.0) | 19 | 3.3 (.6) 4.0 (3.3–4.0) | 28 | 3.3 (.8) 3.0 (3.0–4.0) | 22 | 3.1 (.7) 3.0 (3.0–3.0) | 0.568 |
Dissemination of palliative care evidence | 19 | 3.4 (.8) 4.0 (3.3–4.0) | 20 | 3.4 (.6) 4.0 (3.3–4.0) | 27 | 3.2 (.6) 3.0 (3.0–3.5) | 22 | 3.1 (.8) 3.0 (3.0–3.3)) | 0.611 | |
Use of standardized patient and family reported outcome measures | 19 | 3.5 (.7) 4.0 (3.0–4.0) | 19 | 3.3 (.6) 3.5 (3.0–4.0) | 27 | 2.9 (.7) 3.0 (2.0–3.0) | 22 | 3.3 (.7) 3.0 (3.0–4.0) | 0.056* | |
Development of palliative care indicators to monitor progress | 18 | 3.3 (.7) 3.5 (3.0–4.0) | 19 | 3.2 (.6) 3.0 (3.0–3.8) | 30 | 3.1 (.7) 3.0 (3.0–3.5) | 21 | 3.3 (.7) 3.0 (3.0–4.0) | 0.513 |
Urban | Rural | |||||
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N | M (SD) Median (IQR) | N | M (SD) Median (IQR) | p-value | ||
Education Measures | Healthcare professionals trained in palliative care | 91 | 3.4 (.9) 4.0 (3.0–4.0) | 22 | 3.6 (.8) 3.5 (3.0–4.3) | 0.279 |
Healthcare students trained in palliative care | 76 | 3.3 (.8) 3.0 (3.0–4.0) | 14 | 3.6 (.7) 3.5 (2.8–4.0) | 0.093* | |
Education for palliative family caregivers | 85 | 3.2 (.8) 3.0 (3.0–3.0) | 22 | 3.4 (.7) 3.5 (3.0–4.0) | 0.332 | |
Health care professionals' awareness of the need for early integration of palliative care | 89 | 3.3 (.8) 3.0 (3.0–4.0) | 22 | 3.3 (1.0) 4.0 (2.8–4.8) | 0.912 | |
Interdisciplinary opportunities for palliative care education | 89 | 3.2 (.9) 3.0 (3.0–4.0) | 22 | 3.4 (.7) 4.0 (3.0–4.0) | 0.389 | |
Family Caregiver measures | Formal assessments of family caregiver needs and capacities | 81 | 3.0 (.8) 3.0 (3.0–4.0) | 22 | 3.2 (.6) 3.0 (3.0–4.0) | 0.162 |
Involvement of family in care planning | 88 | 3.3 (.8) 3.0 (3.0–4.0) | 21 | 3.7 (.7) 4.0 (3.8–4.3) | 0.095* | |
Use of technology to support family caregivers | 85 | 3.5 (.8) 3.0 (3.0–4.0) | 20 | 3.6 (.5) 4.0 (4.0–4.0) | 0.972 | |
In-home supports for family caregivers | 80 | 2.8 (1.0) 3.0 (2.0–3.0) | 22 | 3 (1.0) 4.0 (2.0–4.3) | 0.543 | |
Respite for family caregivers | 85 | 2.6 (.9) 3.0 (2.0–3.0) | 22 | 2.7 (.9) 3.0 (2.0–4.0) | 0.744 | |
Access to Bereavement Services | 88 | 3.0 (1.1) 3.0 (2.0–3.0) | 23 | 3.3 (.8) 4.0 (3.0–4.0) | 0.331 | |
Community Capacity Measures | Broad-based community participation in palliative care | 84 | 3.1 (.8) 3.0 (3.0–4.0) | 21 | 3.2 (.8) 3.0 (3.0–3.3) | 0.969 |
Culturally appropriate palliative services and resources | 87 | 3.3 (.7) 3.0 (3.0–4.0) | 21 | 3.4 (.8) 3.5 (3.0–4.0) | 0.969 | |
Public awareness of available palliative services and supports | 88 | 3.2 (.8) 3.0 (3.0–4.0) | 21 | 3.6 (.7) 4.0 (4.0–4.0) | 0.085* | |
Use of technology to communicate between specialist and community-based palliative care providers | 82 | 3.5 (.8) 3.0(3.0–4.0) | 19 | 3.6 (.6) 4.0 (3.8–4.0) | 0.458 | |
Access Measures | Development of navigation models | 82 | 3.3 (.7) 3.0 (3.0–4.0) | 18 | 3.5 (.6) 4.0 (3.0–4.3) | 0.272 |
24/7 access to palliative care expertise | 84 | 3.1 (.9) 3.0 (2.0–3.0) | 21 | 3.2 (.7) 3.5 (3.0–4.0) | 0.451 | |
Death and dying awareness in non-medical settings | 77 | 3.1 (.7) 3.0 (3.0–3.0) | 20 | 3.3 (.6) 3.5 (3.0–4.0) | 0.218 | |
Uptake of advance care planning | 86 | 3.5 (.8) 3.0 (3.0–4.0) | 21 | 3.7 (.6) 4.0 (3.8–4.0) | 0.252 | |
Strategies to integrate palliative care into other healthcare services | 88 | 3.4 (.8) 3.0 (3.0–4.0) | 22 | 3.6 (.7) 4.0 (3.0–4.0) | 0.242 | |
Partnerships between healthcare providers, volunteers, and community | 87 | 3.3 (.7) 3.0 (3.0–4.0) | 21 | 3.4 (.8) 4.0 (3.0–4.3) | 0.629 | |
Integration of lay and spiritual counselors into palliative care | 85 | 3.0 (.9) 3.0 (3.0–4.0) | 18 | 3.2 (.7) 4.0 (3.8–4.0) | 0.368 | |
Places to die when home is not preferable/feasible | 89 | 3.4 (1.0) 4.0 (3.0–4.0) | 23 | 3.1 (.8) 3.5 (2.8–4.3) | 0.091* | |
Services for children living with palliative needs | 64 | 3.1 (.6) 3.0 (3.0–3.0) | 18 | 3.4 (.7) 3.0 (3.0–4.0) | 0.139 | |
Awareness of the gaps in palliative care that exist in your community | 83 | 3.3 (.7) 3.0 (3.0–4.0) | 21 | 3.4 (.8) 4.0 (3.0–4.3) | 0.877 | |
Research and Data Collection | Evidence-based guidelines for non-medical aspects of palliative care | 66 | 3.2 (.7) 3.0 (3.0–4.0) | 13 | 3.5 (.5) 4.0 (3.8–4.0) | 0.062* |
Dissemination of palliative care evidence | 68 | 3.1 (.7) 3.0 (3.0–4.0) | 15 | 3.5 (.5) 4.0 (3.8–4.0) | 0.027* | |
Use of standardized patient and family reported outcome measures | 70 | 3.1 (.7) 3.0 (3.0–3.0) | 13 | 3.4 (.5) 3.5 (3.0–4.0) | 0.208 | |
Development of palliative care indicators to monitor progress | 69 | 3.1 (.7) 3.0 (3.0–4.0) | 14 | 3.4 (.5) 4.0 (3.0–4.0) | 0.102 |