1. Role of Family Caregivers in Rural Ontario Principal Investigator: Kevin Brazil, McMaster University. Co-investigators: Allison Williams, McMaster University; Sharon Kaasalainen, McMaster University; Kathleen Willison, St. Josephs Healthcare; Serge Dumont, University of Laval.

2. Study Purpose Develop a profile of informal caregiving for the terminally ill in rural Ontario. Study Outcome Provide recommendations to assist service planners in developing a responsive community based services for the terminally ill and their caregivers in rural Ontario.

3. Study Objectives Describe the types of informal and formal care provided to the terminally ill and their informal caregivers Describe the types of informal and formal care provided to the terminally ill and their informal caregivers Assess informal caregivers ability to access appropriate and timely care Assess informal caregivers ability to access appropriate and timely care Determine unmet informal caregiver needs Determine unmet informal caregiver needs Describe informal caregiver burden Describe informal caregiver burden

4. Methods Design: Design: –Cross sectional telephone interviews Sample: Sample: –Informal caregivers. Relatives of the patient who provide care to the care recipient on a regular basis. Does not receive remuneration from the patient or other sources for services provided. Relatives of the patient who provide care to the care recipient on a regular basis. Does not receive remuneration from the patient or other sources for services provided.

5. Inclusion Criteria Care recipient: Care recipient: –Adult (over 18 years), –Residing in the study location, –Receiving formal services from the North East Community Care Access Centre (CCAC), and –Designated as palliative by the CCAC Caregiver: Caregiver: –Actively caregiving –Able to communicate in English

6. Interview Schedule Caregiver & Care recipient characteristics* Caregiver & Care recipient characteristics* Caregiver health status Caregiver health status Informal caregiver Inventory of Needs* Informal caregiver Inventory of Needs* Social support and networks Social support and networks Use of available services* Use of available services* Instrumental supports from informal system Instrumental supports from informal system Care recipient functional level Care recipient functional level Informal Caregiver burden Informal Caregiver burden

9. Population of North Eastern Ontario cities (Statistics Canada 2006 Census) Greater Sudbury - 157,857 Greater Sudbury - 157,857 Sault Ste. Marie - 74,948 Sault Ste. Marie - 74,948 North Bay - 53,966 North Bay - 53,966 Timmins - 42,997 Timmins - 42,997

10. Recruitment Effective April 30, 2010 242 Contacted by CCAC 184 Permission to Contact 119 Declines Rural 68 Completed Interviews 44 active 24 bereaved Urban 1 Completed Interview 1 active

11. Caregiver Characteristics Mean age = 59.6 Mean age = 59.6Relationship 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? Yes = 19 (30.9%) Yes = 19 (30.9%) No = 47 (69.1%) No = 47 (69.1%) Education High school incomplete = 16 (23.6%) High school incomplete = 16 (23.6%) Completed high school = 22 (32.4%) Completed high school = 22 (32.4%) Completed college = 17 (25.0%) Completed college = 17 (25.0%) Completed university = 12 (17.6%) Completed university = 12 (17.6%) Employment Status Retired = 29 (42.6%) Retired = 29 (42.6%) Not employed = 22 (32.3%) Not employed = 22 (32.3%) Employed = 15 (22%) Employed = 15 (22%)

12. Financial Impact Think back over your financial situation as it was just before you began to take care of (care recipient). Compared to that time, how would you describe your monthly expenses? Somewhat less/much less now = 14 (20.6%) Somewhat less/much less now = 14 (20.6%) About the same = 25 (36.8%) About the same = 25 (36.8%) Somewhat more/much more now = 25 (36.7%) Somewhat more/much more now = 25 (36.7%)

13. Financial Impact In general how do your family finances work out at the end of the month? Do you usually have: Some money left over = 33 (48.5%) Some money left over = 33 (48.5%) Just enough to make ends meet = 23 (33.8%) Just enough to make ends meet = 23 (33.8%) Not enough to make ends meet = 6 (8.8%) Not enough to make ends meet = 6 (8.8%) Dont know = 2 (2.9%) Dont know = 2 (2.9%)

14. Type 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%)

16. Home Caregiver Need Survey The condition is very important and not currently met 1. Receiving information on the patients psychological needs. 2. Knowing what to expect as the illness develops. 3. Receiving information on ways to relieve pain. 4. Receiving information on ways to ensure the patients comfort. 5. Receiving information on ways of comforting the patient. Obtaining financial assistance. Obtaining financial assistance. 6. Receiving information on symptoms. 7. Having the support of my friends. 8. Having the support of my family. 9. Having someone to talk to.

17. Home Caregiver Need Survey contd 10. Receiving information on activities and exercises for the patient. 11. Receiving information on the patients physical needs. 12. Getting help with running errands. 13. Receiving information on treatments. 14. Receiving information on medication. Having the support of a group of people who are experiencing the same things. Having the support of a group of people who are experiencing the same things. 15. Getting help providing physical care to the patient. 16. Getting help to be able to rest. 17. Being appreciated by the patient. 18. Being reassured that I am providing proper care to the patient.

18. Home Caregiver Need Survey contd 19. Getting help with household chores. 20. Having the support of a spiritual counselor. 21. Being in the prayers of others. 22. Finding ways of conquering my fears and dealing with my distress. 23. Getting help with transportation.

19. Experiences of available services I have one health care provider who I knew 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 health care provider involved in Care recipients 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%)

20. When new services are needed, they are obtained in a timely fashion that was 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 recipients needs, we are able to get assistance 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%)

21. When new services are needed, they are 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 to obtain the services needed. Strongly agree/agree = 41 (60.3%) Strongly agree/agree = 41 (60.3%) Strongly disagree/disagree = 10 (14.7%) Strongly disagree/disagree = 10 (14.7%) Not applicable = 16 (23.5%) Not applicable = 16 (23.5%)

22. Perceived Accessibility Scale When there is a change in care recipients needs, we are able to get assistance right away. When there is a change in care recipients needs, we are able to get assistance right away. When new services are needed, they are easy to obtain. When new services are needed, they are easy to obtain. If there is an emergency, it is not difficult to obtain the services needed. If there is an emergency, it is not difficult to obtain the services needed. A three item measure of perceived program accessibility: Mean = 1.8590, Standard deviation = 0.94190

23. Help was available at night or on weekends if we 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 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%)

24. How important is it to you to be involved in decisions concerning the care of care 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 decisions concerning the care of care 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%)

25. Thank you