Role of Family Caregivers in Role of Family Caregivers in Rural OntarioRural Ontario

Principal Investigator:Principal Investigator: Kevin Brazil, McMaster Kevin Brazil, McMaster University.University.Co-investigators:Co-investigators: Allison Williams, McMaster Allison Williams, McMaster University; Sharon Kaasalainen, McMaster University; University; Sharon Kaasalainen, McMaster University; Kathleen Willison, St. Joseph’s Healthcare; Serge Kathleen Willison, St. Joseph’s Healthcare; Serge Dumont, University of Laval.Dumont, University of Laval.

Study PurposeStudy Purpose

Develop a profile of informal caregiving Develop a profile of informal caregiving for the terminally ill in rural Ontario.for the terminally ill in rural Ontario.

Study OutcomeStudy Outcome

Provide recommendations to assist Provide recommendations to assist service planners in developing a service planners in developing a responsive community based services for responsive community based services for the terminally ill and their caregivers in the terminally ill and their caregivers in rural Ontario.rural Ontario.

Study ObjectivesStudy Objectives

Describe the types of informal and formal Describe the types of informal and formal care provided to the terminally ill and their care provided to the terminally ill and their informal caregiversinformal caregivers

Assess informal caregivers ability to Assess informal caregivers ability to access appropriate and timely care access appropriate and timely care

Determine unmet informal caregiver Determine unmet informal caregiver needs needs

Describe informal caregiver burden Describe informal caregiver burden

MethodsMethods

Design:Design: – Cross sectional telephone interviewsCross sectional telephone interviews

Sample:Sample:– Informal caregivers. Informal caregivers.

Relatives of the patient who provide Relatives of the patient who provide care to the care recipient on a care to the care recipient on a regular basis. Does not receive regular basis. Does not receive remuneration from the patient or remuneration from the patient or other sources for services provided. other sources for services provided.

Inclusion CriteriaInclusion Criteria

Care recipient:Care recipient:– Adult (over 18 years), Adult (over 18 years), – Residing in the study location,Residing in the study location,– Receiving formal services from the Receiving formal services from the

North East Community Care Access North East Community Care Access Centre (CCAC), andCentre (CCAC), and

– Designated as palliative by the CCACDesignated as palliative by the CCAC

Caregiver:Caregiver:– Actively caregivingActively caregiving– Able to communicate in EnglishAble to communicate in English

Interview ScheduleInterview Schedule

Caregiver & Care recipient Caregiver & Care recipient characteristics*characteristics*

Caregiver health status Caregiver health status Informal caregiver Inventory of Needs*Informal caregiver Inventory of Needs* Social support and networksSocial support and networks Use of available services*Use of available services* Instrumental supports from informal Instrumental supports from informal

systemsystem Care recipient functional levelCare recipient functional level Informal Caregiver burdenInformal Caregiver burden

Population of North Eastern Ontario Population of North Eastern Ontario cities cities (Statistics Canada 2006 Census)(Statistics Canada 2006 Census)

Greater Sudbury - 157,857Greater Sudbury - 157,857 Sault Ste. Marie - 74,948Sault Ste. Marie - 74,948 North Bay - 53,966North Bay - 53,966 Timmins - 42,997Timmins - 42,997

Recruitment Recruitment Effective April 30, 2010Effective April 30, 2010

242Contacted by CCAC

184Permission to Contact

119Declines

Rural68 Completed Interviews

44 active24 bereaved

Urban1 Completed Interview

1 active

Caregiver CharacteristicsCaregiver Characteristics

Mean age = 59.6Mean age = 59.6

RelationshipRelationship Husband/wife = 35 (51.5%)Husband/wife = 35 (51.5%) Son/daughter = 23 (33.8%)Son/daughter = 23 (33.8%) Brother/sister = 2 (2.9%)Brother/sister = 2 (2.9%) Daughter-in-law = 1 (1.5%)Daughter-in-law = 1 (1.5%) Cousin = 1 (1.5%) Cousin = 1 (1.5%) Friend = 6 (8.8%)Friend = 6 (8.8%)

Did Caregiver relocate?Did Caregiver relocate? Yes = 19 (30.9%)Yes = 19 (30.9%) No = 47 (69.1%)No = 47 (69.1%)

EducationEducation High school incomplete = High school incomplete =

16 (23.6%)16 (23.6%) Completed high school = Completed high school =

22 (32.4%)22 (32.4%) Completed college = 17 Completed college = 17

(25.0%)(25.0%) Completed university = 12 Completed university = 12

(17.6%)(17.6%)

Employment StatusEmployment Status Retired = 29 (42.6%)Retired = 29 (42.6%) Not employed = 22 Not employed = 22

(32.3%)(32.3%) Employed = 15 (22%)Employed = 15 (22%)

Financial ImpactFinancial Impact

Think back over your financial situation as Think back over your financial situation as it was just before you began to take it was just before you began to take care of (care recipient). Compared to care of (care recipient). Compared to that time, how would you describe your that time, how would you describe your monthly expenses?monthly expenses?

Somewhat less/much less now = 14 Somewhat less/much less now = 14 (20.6%)(20.6%)

About the same = 25 (36.8%)About the same = 25 (36.8%) Somewhat more/much more now = 25 Somewhat more/much more now = 25

(36.7%)(36.7%)

Financial ImpactFinancial Impact

In general how do your family finances In general how do your family finances work out at the end of the month? Do work out at the end of the month? Do you usually have:you usually have:

Some money left over = 33 (48.5%)Some money left over = 33 (48.5%) Just enough to make ends meet = 23 Just enough to make ends meet = 23

(33.8%)(33.8%) Not enough to make ends meet = 6 Not enough to make ends meet = 6

(8.8%)(8.8%) Don’t know = 2 (2.9%)Don’t know = 2 (2.9%)

Type of Services UsedType of Services Used

In the last 2 weeks, has he/she used any of the following services or had any visits with:

pharmacy - 60 (88.2%)pharmacy - 60 (88.2%) in-home nursing care - 56 (82.4%)in-home nursing care - 56 (82.4%) family physician - 41 (60.3%)family physician - 41 (60.3%) personal support worker - 31 (45.6%)personal support worker - 31 (45.6%) physician specialists - 23 (33.8%)physician specialists - 23 (33.8%) emergency room visits - 21 (30.9%)emergency room visits - 21 (30.9%) housekeeping - 20 (29.4%)housekeeping - 20 (29.4%) transportation - 11 (16.2%)transportation - 11 (16.2%) caregiver respite - 10 (14.7%)caregiver respite - 10 (14.7%) nutritionist/dietician - 10 (14.7%)nutritionist/dietician - 10 (14.7%) counselling / social work - 9 (13.2%)counselling / social work - 9 (13.2%) occupational therapy - 8 (11.8%)occupational therapy - 8 (11.8%) physiotherapy - 8 (11.8%)physiotherapy - 8 (11.8%) hospice volunteer support - 4 (5.9%)hospice volunteer support - 4 (5.9%)

Home Caregiver Need SurveyHome Caregiver Need Survey

The condition is very important and not currently The condition is very important and not currently metmet

1.1. Receiving information on the patients’ psychological Receiving information on the patients’ psychological needs.needs.

2.2. Knowing what to expect as the illness develops. Knowing what to expect as the illness develops.3.3. Receiving information on ways to relieve pain. Receiving information on ways to relieve pain.4.4. Receiving information on ways to ensure the patient’s Receiving information on ways to ensure the patient’s

comfort.comfort.5.5. Receiving information on ways of comforting the patient. Receiving information on ways of comforting the patient.

Obtaining financial assistance.Obtaining financial assistance.6.6. Receiving information on symptoms. Receiving information on symptoms.7.7. Having the support of my friends. Having the support of my friends.8.8. Having the support of my family. Having the support of my family.9.9. Having someone to talk to. Having someone to talk to.

Home Caregiver Need Survey Home Caregiver Need Survey cont’dcont’d

10.10. Receiving information on activities and exercises for Receiving information on activities and exercises for the patient.the patient.

11.11. Receiving information on the patient’s physical needs. Receiving information on the patient’s physical needs.12.12. Getting help with running errands. Getting help with running errands.13.13. Receiving information on treatments. Receiving information on treatments.1414. Receiving information on medication.. Receiving information on medication. Having the support of a group of people who are Having the support of a group of people who are

experiencing the same things.experiencing the same things.15.15. Getting help providing physical care to the patient. Getting help providing physical care to the patient.16.16. Getting help to be able to rest. Getting help to be able to rest.17.17. Being appreciated by the patient. Being appreciated by the patient.18.18. Being reassured that I am providing proper care to Being reassured that I am providing proper care to

the patient.the patient.

Home Caregiver Need Survey Home Caregiver Need Survey cont’dcont’d

19.19. Getting help with household chores. Getting help with household chores.20.20. Having the support of a spiritual counselor. Having the support of a spiritual counselor.21.21. Being in the prayers of others. Being in the prayers of others.22.22. Finding ways of conquering my fears and Finding ways of conquering my fears and

dealing with my distress.dealing with my distress.23.23. Getting help with transportation. Getting help with transportation.

Experiences of available servicesExperiences of available services

I have one health care provider who I knew I have one health care provider who I knew I could contact for any problem.I could contact for any problem.

Yes = 55 (82.1%)Yes = 55 (82.1%) No = 5 (7.5%)No = 5 (7.5%) Uncertain 7 (10.4%)Uncertain 7 (10.4%)

I have had problems in getting help from a I have had problems in getting help from a health care provider involved in Care health care provider involved in Care recipient’s carerecipient’s care

Yes = 13 (20.0%)Yes = 13 (20.0%) No = 49 (75.4%)No = 49 (75.4%) Uncertain = 3 (4.6%)Uncertain = 3 (4.6%)

When new services are needed, they are When new services are needed, they are obtained in a timely fashion that was obtained in a timely fashion that was useful to you.useful to you.

Strongly agree/agree = 45 (66.1%)Strongly agree/agree = 45 (66.1%) Strongly disagree/disagree = 10 (14.8%)Strongly disagree/disagree = 10 (14.8%) Not applicable = 12 (17.6%)Not applicable = 12 (17.6%)

When there is a change in care recipient’s When there is a change in care recipient’s needs, we are able to get assistance needs, we are able to get assistance right away.right away.

Strongly agree/agree = 36 (52.9%)Strongly agree/agree = 36 (52.9%) Strongly disagree/disagree = 10 (14.8%)Strongly disagree/disagree = 10 (14.8%) Not applicable = 4 (5.9%)Not applicable = 4 (5.9%)

When new services are needed, they are When new services are needed, they are easy to obtain.easy to obtain.

Strongly agree/agree = 33 (48.6%)Strongly agree/agree = 33 (48.6%) Strongly disagree/disagree= 11 (16.2%)Strongly disagree/disagree= 11 (16.2%) Not applicable = 6 (8.8%)Not applicable = 6 (8.8%)

If there is an emergency, it is not difficult If there is an emergency, it is not difficult to obtain the services needed.to obtain the services needed.

Strongly agree/agree = 41 (60.3%)Strongly agree/agree = 41 (60.3%) Strongly disagree/disagree = 10 Strongly disagree/disagree = 10

(14.7%)(14.7%) Not applicable = 16 (23.5%)Not applicable = 16 (23.5%)

Perceived Accessibility ScalePerceived Accessibility Scale

When there is a change in care recipient’s When there is a change in care recipient’s needs, we are able to get assistance right needs, we are able to get assistance right away.away.

When new services are needed, they are When new services are needed, they are easy to obtain.easy to obtain.

If there is an emergency, it is not difficult to If there is an emergency, it is not difficult to obtain the services needed.obtain the services needed.

A three item measure of perceived program A three item measure of perceived program accessibility:accessibility:

Mean = 1.8590, Standard deviation = 0.94190Mean = 1.8590, Standard deviation = 0.94190

Help was available at night or on weekends if Help was available at night or on weekends if wewe had a crisis. had a crisis.

Strongly agree/agree = 33 (48.5%)Strongly agree/agree = 33 (48.5%) Strongly disagree/disagree = 16 (23.5%)Strongly disagree/disagree = 16 (23.5%) Not applicable = 18 (26.5%)Not applicable = 18 (26.5%)

How often have you been confused about How often have you been confused about the roles of different service providers?the roles of different service providers?

Never/rarely = 42 (61.8%)Never/rarely = 42 (61.8%) Sometimes = 14 (20.6%)Sometimes = 14 (20.6%) Always/mostly = 7 (10.3%)Always/mostly = 7 (10.3%) Not applicable = 4 (5.9%)Not applicable = 4 (5.9%)

How important is it to you to be involved in How important is it to you to be involved in decisions concerning the care of care decisions concerning the care of care recipient?recipient?

Not at all important = 1 (1.5%)Not at all important = 1 (1.5%) Somewhat important = 2 (2.9%)Somewhat important = 2 (2.9%) Very important = 62 (91.2%)Very important = 62 (91.2%) Not applicable = 2 (2.9%)Not applicable = 2 (2.9%)

How often do service providers involve you in How often do service providers involve you in decisions concerning the care of care decisions concerning the care of care

recipient?recipient? Never/rarely = 5 (7.4%)Never/rarely = 5 (7.4%) Sometimes = 5 (7.4%)Sometimes = 5 (7.4%) Always/mostly = 51 (75%)Always/mostly = 51 (75%)

Thank you