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Caregiver distress: A crisis grows

A conversation between Anna Greenberg, Interim President and CEO of Health Quality Ontario, and Craig Lindsay, an individual who has had significant experience as a caregiver. Anna and Craig discuss both the broader issue of caregiver distress and the very personal challenges that an individual caregiver can face.

Anna Greenberg: Three years ago, Health Quality Ontario released The Reality of Caring, a report that documented the increased percentage of unpaid caregivers (caring for home care clients) reporting stress and burnout. Since the release of that report, the situation has become worse - not better. The most recent data indicates 44% of home care clients with an informal/unpaid caregiver reported at least once that their caregiver was experiencing distress, anger or depression related to their role and/or were unable to continue their caregiving activities. This is a 21% increase in a 2-year period.

Craig Lindsay: From personal experience I can attest to this. My mother, Lois, lived alone for the last 16 years of her life. She needed some minimal support; someone to go to appointments with her, help with understanding her medications, general housekeeping, and keeping her home safe and accessible. I could do that, and my brothers helped too. As she aged her needs changed. Unfortunately, mine did too. My kidneys failed and I started dialysis three times a week. My ability to support her care, after she received the diagnosis of terminal lung cancer, was not what it should have been. For those last weeks I struggled to help her die comfortably at home. Juggling these responsibilities inevitably led to stress and I know I am by no means unique.

Quality Improvement Plans: Meaningful change and more value

Lee Fairclough


As we begin a new year and look towards further enhancing quality care in Ontario, it’s a good time to reflect on the annual public commitment that health care organizations make to their communities through their Quality Improvement Plans (QIPs). These plans share what was achieved to improve care in the previous year and set out how they will improve health care quality within their organizations in the coming year.

On April 1, 2019, more than 1000 QIPs will be submitted to Health Quality Ontario by hospitals, long-term care homes, home-care organizations and primary care teams and simultaneously shared with their local communities.

It is worth remembering that QIPs have only been required in Ontario for the past eight years, starting with Ontario’s 142 public hospitals. The original QIP stated “they should be seen as a tool, providing a structured format and common language that focuses an organization on change.” This was a major shift from the prevailing, more ad hoc approach to quality most Canadian health care organizations took, where there was limited support for local improvement efforts and as a result, change was diffused.

Measuring Up 2018: Complex Challenges

Anna Greenberg

Hospital overcrowding and hallway health care are realities facing today’s health care system in Ontario. The fact that they represent both a source and a symptom of the pressures that patients and frontline clinicians face underscores the complexity of the challenges to improve the situation.

This is one of the main messages to come from Measuring Up 2018, Health Quality Ontario’s yearly report on the performance of the province’s health system.

The report documents the cascading effects of hospital overcrowding such as longer wait times for admission to hospital from the emergency room; longer wait times to transfer out of hospital to other types of care – such as long-term care, home care; and insufficient access to mental health and addictions care. At a time when more and more patients have complex health needs, these stressors on the system are also contributing to rising levels of distress among unpaid caregivers.

Improving Care in the Long Term

Health Quality Ontario has just updated the information available on its website showing how well long-term care is being delivered in the province. It puts a fresh face on the largest, longest-running data collection and reporting system in Canada for quality of care information on long-term care homes.

With these homes having a resident population with increasingly complex care needs, the evidence suggests the quality of care provided to those residents is improving in many respects, but that more can be done.

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