Table 1
Participant Characteristics.
| Clients | Toronto | Quebec | New Zealand | Across all 3 Jurisdictions |
|---|---|---|---|---|
| n = 32 | n = 12 | n = 39 | n = 83 | |
| Translated | 24% | 0 | 0 | 10% |
| Age | ||||
| <50 | 6% | 0 | 0 | 2% |
| 50–64 | 13% | 0 | 36% | 22% |
| 65–74 | 25% | 50% | 23% | 28% |
| >75 | 56% | 50% | 41% | 48% |
| Sex | ||||
| Female | 91% | 50% | 62% | 71% |
| Ethnicity | 44% East Asian 25% European 19% Caribbean | 92% French Canadian Caucasian 8% South Asian | 62% Māori 36% NZ European 3% Other European | 29% Māori 18% Canadian Caucasian 17% East Asian 17% NZ European 11% European 7% Caribbean 1% South Asian |
| Living Arrangements | ||||
| Lives alone | 44% | 83% | 31% | 43% |
| Lives with at least 1 other person | 56% | 17% | 69% | 57% |
| Number of Conditions | ||||
| Coronary Obstructive Pulmonary Disease | 9% | 17% | 18% | 14% |
| Cancer in the last 5 years | 16% | 17% | 5% | 11% |
| Asthma | 13% | 17% | 23% | 18% |
| High blood pressure | 63% | 87% | 36% | 51% |
| Ischemic Heart Disease | 16% | 0 | 46% | 28% |
| Diabetes | 41% | 33% | 62% | 49% |
| High Cholesterol | 66% | 33% | 8% | 34% |
| Stroke | 22% | 75% | 13% | 25% |
| Arthritis | 75% | 58% | 51% | 61% |
| Other (Dementia, Alzheimer’s, Cataracts, Hearing Impairment) | 53% | 25% | 33% | 40% |
| Chronic Pain | 78% | 42% | 46% | 58% |
| Mental Health (Anxiety, Depression) | 50% | 17% | 33% | 37% |
| Caregivers | 39 | 9 | 41 | 89 |
| Translated | 23% | 0 | 7.3% | 13% |
| Age | ||||
| <50 | 18% | 0 | 20% | 17% |
| 50–64 | 36% | 67% | 48.8% | 45% |
| 65–74 | 27% | 11% | 17.1% | 20% |
| >75 | 21% | 22% | 14.6% | 18% |
| Sex | ||||
| Female | 69% | 89% | 63.4% | 69% |
| Ethnicity | 49% East Asian 21% European 13% Canadian, Caucasian 10% Caribbean 8% South Asian | 78% French Canadian Caucasian 22% European | 46.3% Māori 34.2% NZ European 17.1% East Asian 2.4% NZ European and Māori | 29% East Asian 21% Māori 16% NZ European 13% Canadian Caucasian 11% European 4% Caribbean 3% South Asian 1% NZ European and Māori |
| Relationship to Client | ||||
| Child | 54% | 56% | 48.8% | 53% |
| Spouse | 36% | 22% | 43.9% | 38% |
| Other | 10% | 11% | 7% | 9% |
| Living Arrangements | ||||
| With Client | 74% | 56% | 73.2% | 72% |
| Lives separately | 26% | 44% | 27% | 28% |
| Chronic diseases managed by Caregiver | ||||
| Coronary Obstructive Pulmonary Disease | 8% | 0 | 10% | 8% |
| Cancer in the last 5 years | 10% | 22% | 12% | 12% |
| Asthma | 13% | 0 | 10% | 10% |
| High blood pressure | 64% | 22% | 54% | 55% |
| Ischemic Heart Disease | 41% | 12.5% | 32% | 34% |
| Diabetes | 59% | 33% | 46% | 42% |
| High Cholesterol | 49% | 12.5% | 29% | 47% |
| Stroke | 49% | 44% | 24% | 37% |
| Arthritis | 56% | 12.5% | 27% | 38% |
| Other (Dementia, Alzheimer’s, Cataracts, Hearing Impairment) | 62% | 56% | 7% | 36% |
| Chronic Pain | 54% | 12.5% | 15% | 31% |
| Mental Health (Anxiety, Depression) | 67% | 12.5% | 30% | 44% |
| Support Provided by Caregiver | ||||
| Personal care | 76% | 56% | 41% | 57% |
| Day-to-day assistance | 95% | 56% | 85% | 85% |
| Household chores | 97% | 78% | 83% | 88% |
| Additional support: Companionship, Decision making | 95% | 67% | 100% | 93% |
Table 2
Provider Attributes and Supporting Activities.
| Attribute | Example Characteristics |
|---|---|
| Feeling Heard, Appreciated and Comfortable | Talk to patient and caregiver like a
friend
|
Patient/caregiver and provider put themselves
in the shoes of the other and attempts to understand the others
constraints
| |
Focus on the person outside the diagnosis
| |
Take time with the patient and family
| |
| Consistent people provide care to increase patient and caregiver comfort | |
| Patients’ providers talk to one other, sharing appropriate information so everyone knows what is going on | |
| Provider, patient and caregiver speak the same language or have appropriate translation available | |
Caregiver’s experience is
acknowledged
| |
| Having Someone to Count On | Having a trusted ‘go-to’- person
(typically a paid provider) who is:
|
The counted on person responds quickly or
manages expectations about response time and:
| |
| Easily Accessing Health and Social Care | Access enabled by having a ‘go-to’ person who can connect and facilitate access to health and social resources (as outlined above) |
| Providers span boundaries/wear multiple hats so both health and social needs can be met simultaneously (such as providing fresh food in primary care clinics or liaising with housing supports) | |
| Ensure services are useful and practical (such as having food delivery with instructions on how to prepare the food or having assistive devices delivered and installed). | |
Offer different methods of service
provision
| |
Health and social care resources offered under
one roof or in close proximity
| |
| Knowing How to Manage Health and What to Expect | Use lay language (avoid complex medical terms) |
| Provide clear explanations as to why certain treatment options are recommended and what to expect | |
Instill confidence in patients and caregivers
in self-management
| |
Accept a ‘trial and error’
approach to health management
| |
| Involve caregivers in discussions and work together to implement a plan to manage health and social experiences | |
Plan ahead
| |
| Work with patients and caregivers to come to terms with current health by modifying activities or ceasing activities (such as driving) if unsafe | |
| Tell patients and caregivers what services they are eligible for | |
| Feeling Safe | Provide patients and caregivers access to needed mobility aids and offer training in their use inside and outside the home |
| Ensure patients have access to personal resources (e.g., finances, caregiver support) to obtain needed equipment/mobility aides | |
| Ensure that the caregiver is able to safely do transfers and personal care without putting health at risk | |
| Work with caregivers in their home to address complex care needs of patients (such as behaviors and unpredictable events that typically arise with dementia) | |
Provide caregivers with additional supports to
offer peace of mind so they are able to attend
appointments or social outings and know the care recipient is safe
| |
| Being Independent | Explore opportunities for patients and caregiver to participate in enjoyed activities (connect with friends, partake in hobbies, travel) |
Ensure caregivers are able to have a
“true” break for respite
| |
| Give choices in a care plan (if desired by patients and caregivers) so they still feel in control | |
| Explore how the patients built environment can be conducive to enabling autonomy (assisted living/supportive housing options to support help with instrumental tasks) |
Figure 1
Intersection of Attributes.