As health care services shift from hospital to home and family members take on increasing responsibility for providing care to elderly relatives, concerns have been raised about adequately supporting family caregivers. This study investigated the experiences of informal caregivers accessing the formal homecare system in a mid-sized Ontario city. The majority of caregivers found the formal system confusing, even after initial contact with CCACs and case managers. Many were unable to access services due to declining availability and strict eligibility requirements. Some avoided seeking help from the CCAC because they perceived it as being overburdened. The disconnect between the legislated, "seamless system" that is supposed to be in place and caregivers' actual experiences accessing fragmented formal services is a source of frustration. General Practitioners and CCACs can play more proactive roles in assisting family members to access formal services.

Background: As health care services shift from hospital to home, the majority of elderly Canadians who require homecare services rely on the unpaid labour of family and friends (informal caregivers), rather than support from the formal system. Concerns have been raised about adequately supporting family caregivers as they undertake complex, specialized tasks, and long-term care responsibilities. This study investigated the experiences of informal caregivers accessing the formal homecare system in a mid-sized Ontario city, focusing on the local Community Care Access Centre.

Methods: Semi-structured interviews were conducted with 30 self-identified family members providing care to an elderly person at home. Subjects were recruited via local media, support groups, snowball sampling, as well as the local CCAC, to ensure participation by caregivers with various levels of contact with the formal system. Seventy-six percent of participants were female, 63% were spouses of the care recipient and were elderly themselves, and 76% lived with the care recipient. A total of 18 of 30 caregivers were receiving services through the local CCAC at the time of interview; six were receiving limited formal support via non-CCAC channels, and six had not received any formal support at all. Some were supplementing publicly-funded support with additional privately paid assistance.

Findings: The majority of caregivers found the formal system confusing, even after initial contact with CCACs and case managers. They had difficulty understanding what was available to them, and learned to be persistent, assertive and well organized to acquire effective support. Many were overly conservative in estimating their requirements for assistance, and tried to manage alone until in a crisis. General Practitioners often knew very little about formal homecare services available to families, despite being regarded by caregivers as a source of referral to the formal system.

Many caregivers were unable to access formal care, due to declining availability of services and strict eligibility requirements. Several avoided seeking help from the CCAC because they perceived it as being overburdened. For those who were eligible to receive services, inflexibility of the system resulted in underutilization. For example, rules for formal respite were regarded as being restrictive, and beds were available on such short notice that family members could not take advantage. Many also viewed the 60-hour legislated monthly care maximum as an entitlement, while the majority actually received many fewer hours of care from the CCAC. Caregivers felt the quality was good and they appreciated being offered flexible hours. Finally, high staff turnover at the CCAC was a major source of concern for family caregivers who had to repeatedly train and manage new workers, leading some to seek support elsewhere.

Conclusions: Family caregivers regard themselves as being complementary to workers in the formal system, and want to be supported in their roles. The disconnect between the legislated, "seamless system" that is supposed to be in place and caregivers' actual experiences accessing fragmented formal services is a source of frustration for many. General Practitioners can play more proactive roles in assisting family members to access formal services. While the stretched resources of CCACs are acknowledged, they can also be more proactive in helping caregivers to access their services.

Reference: Wiles, Janine. Informal caregivers' experiences of formal support in a changing context. Health and Social Care in the Community, 2003; 11(3): 189-207.

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