Family Care in EOL in Rural Ont.

Hughes P et al Providing Cancer and Palliative Care in Rural Areas: A Review of Patient and Carer Needs. Journal of Palliative Care, 2004  Identified 11 papers that specifically examined needs of patients and carers  Four papers used a survey approach all where conducted in the US. all where conducted in the US.  Most were small scale studies.

Research Purpose  Describe family caregiver characteristics and reactions to providing care  Describe the pattern of informal and formal supports  Describe family perception of patient unmet patient needs  Describe family unmet needs  Determine factors associated with caregiver burden

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

Sample cont’d  Inclusion criteria: Care recipient adult (over 18 years), residing in the study locations, receiving formal services from a Community Care Access Centre (CCAC), and designated as palliative by the community care agency. Care recipient adult (over 18 years), residing in the study locations, receiving formal services from a Community Care Access Centre (CCAC), and designated as palliative by the community care agency. The caregiver is able to communicate in English The caregiver is able to communicate in English

Setting  Study Participants will be recruited from catchments of CCACs that have been identified as having census subdivisions that predominately have no or weak Metropolitan Impact Zones (MIZ).

Old CCACs  Algoma  Cochrane  Grey-Bruce  Huron  Kenora & Rainy River  Muskoka East Perry Sound  Timiskaming  West Parry Sound

New CCACs (January 1, 2007)  42 CCACs have been aligned to 14 LHINS  14 EOL Networks also aligned with the LHINS

Procedure  Caregiver will be recruited over a 12 (or is it 24?) month period.  Case managers from the communities’ CCACs or nurses from the visiting nursing agencies will identify potential caregiver participants, describe the study to them and obtain consent to release their names and contact number to the study investigators

Procedure Cont’d  An information letter will be left with the family (in the case of the CCAC home visit) or the investigators will mail the letter before making telephone contact  Participants reminded of the letter contacted by phone invited to participate in the study, a time will be set for the interview.  A computer-assisted telephone interviewing (CATI) system will be used

Interview Schedule  Caregiver & Care recipient characteristics  Caregiver health status and illnesses  Family Inventory of Needs  Perception of patients’ unmet needs  Social support and networks  Use of available services  Instrumental supports from informal system  Care recipient functional level  Caregiver burden

Interview schedule  Two versions Actively caregiving Actively caregiving Bereavement (2-3 months) Bereavement (2-3 months)

CSIC Status 648 potential 530 (118) T1 373 (55) T1 (B) 134 (32) T2 134 (32) T2 (B) 148 (58)

Analysis  Two approaches Descriptive Descriptive Describe family caregiver characteristics and reactions to providing care Describe family caregiver characteristics and reactions to providing care Who provides family care, level of burden, type of care, length of caregivingWho provides family care, level of burden, type of care, length of caregiving Describe the pattern of informal and formal supports Describe the pattern of informal and formal supports What type of health social services are usedWhat type of health social services are used Informal supportsInformal supports Perception of unmet patient needsPerception of unmet patient needs Perception of family unmet needsPerception of family unmet needs

Inferential Inferential Based on the stressor theory proposed by PearlinBased on the stressor theory proposed by Pearlin Caregiver burden is linked to a negative reaction to caregiving and can refer to the physcial, psychological, emotional, social, and financial problems associated that accompany caregvingCaregiver burden is linked to a negative reaction to caregiving and can refer to the physcial, psychological, emotional, social, and financial problems associated that accompany caregving Hypothesis Hypothesis Caregiver perception of unmet patient’s unmet needs associated with caregiver characteristics would act as stressors, having a significant impact on caregiver burdenCaregiver perception of unmet patient’s unmet needs associated with caregiver characteristics would act as stressors, having a significant impact on caregiver burden

Next Steps  Finalize interview protocol (may – June) Review of instruments conducted, template requires development Review of instruments conducted, template requires development  Finalize hypotheses on determinants of CG burden (stressor theory proposed by Pearlin)  Investigator meeting (June)

 Contact EOL Networks and CCACs of selected study regions (May – June)  Prepare ethics submission – sept.

Challenges  A standard definition of palliative is elusive We will use provider designation. It is dependent on provider norms, however it is provider perceptions which identify and define palliative We will use provider designation. It is dependent on provider norms, however it is provider perceptions which identify and define palliative  Liaising with agency staff – the absence of the personal touch

 Agencies restructure  Staff turnover  Staff resistance Workload Workload Protecting clients Protecting clients Research is a waste of time Research is a waste of time

The importance of linkage and exchange agency presentations educational bursary reflective practice certificates newsletters thank you cards phone call bi-weekly Results trust familiarity understanding