Making a Difference: Exploring the Experiences and Needs of Caregivers

Presented by Hospice Toronto and First Unitarian Congregation of Toronto
Funded by a New Horizons for Seniors Grant
Government of Canada
January, 2010


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Purpose: To partner with other diverse community organizations, to engage seniors who have been caregivers for the purpose of developing a caregiver support model that is based upon actual expressed (rather than perceived) caregiver needs. Objective: To engage a diverse group of seniors and other community members who have been caregivers themselves to collect information about their experience, perceptions and concerns as a caregiver (for either a family member or friend with a life threatening illness); to develop a caregiver support model based on the collected information focusing on the most valued supports as well as expressed gaps; pilot and evaluate a support model; implement an outreach process through training seminars, written and electronic materials so that formal and informal organizations, community groups and individuals will have access to these caregiver support models.

Method: For diversity, community and partnership purposes, the sample population was comprised of previous caregivers, particularly those over 55, including a Portuguese Women’s group, faith based congregants, caregivers from the Disability and Asian community and Hospice volunteers who had personal and informal caregiver experience. The design evolved into a mixed method approach (focus groups, a resource summary survey, and an online application of the focus group and resource survey questions). There were 91 participants who were recruited through snowball sampling, word-of-mouth and information/promotion initiatives.

Outcomes: The development and facilitation of an enhanced Expressive Arts group format and a Hospice Caregiver Resource Package that integrated the expressed needs of the majority of participants, those supports they would have like to have had but did not receive. Results demonstrated consistent themes: that access to a caregiver support group, being listened to, and strategies for self care, disease and system specific education and assistance with navigation of the healthcare system were needed. Findings were based on narrative not empirical data.