Role of Family Caregivers in Role of Family Caregivers in Rural Ontario Rural 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
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Role of Family Caregivers in Rural Ontario Principal Investigator: Kevin Brazil, McMaster University. Co-investigators: Allison Williams, McMaster University;
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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
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
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
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.
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
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.
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.
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.
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.
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?
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