There are over 8.1 million family caregivers across Canada, yet we are invisible.
How did this happen? Family caregivers are not healthcare professionals or patients. We are not viewed as the source of knowledge and healing or the locus of pain. We are not only unrecognized as a member of a patient’s health care team, but we are also isolated in managing the complex issues that arise during caregiving, and this is why many of us feel invisible.
The shock and impact of diagnosis on family caregivers is often overlooked. We are expected to 'tough it out' in the name of love. We are expected to sharpen our caregiving skills and expertly navigate our patient’s journey through the system. We put our lives and personal ambitions on hold in order to best take care of our loved ones and we forget, or we do not have time, to take care of ourselves – or our other dependents.
Thankfully there have been some recent public discussions on the importance of caring for caregivers. Due to aging baby boomers, changing family structures, and financial pressure on health care systems, Canadian health policy makers have been forced to consider the sustainability of the healthcare system without the services provided by family caregivers and without the money caregivers save for the system. This means there is now a strong economic incentive for the system to provide help and support to family caregivers, or at least for those of us who take care of the elderly. This is a step forward, but it ignores a significant number of family caregivers: parents of sick children, caregivers to patients with mental illness, and caregivers to a spouse. Take me for example: I was 29 years old when my 32-year-old husband was diagnosed with cancer.
Reforming the healthcare system is necessary, and given the budgetary constraints, priorities must be set. Blaming “the system” for ignoring the problems faced by family caregivers is tricky; you then blame everyone and no one. For any adequate and long-lasting change to occur, a change from within is required, such as an attitudinal change toward how we perceive the role of family caregivers. The system can benefit family caregivers and benefit from them, but only if caregivers are accepted as members of health care teams. Providers already know the value of working with caregivers, as we often see with patients who have problems communicating i.e. alzheimer's patients, people with mental illness. In these cases healthcare providers turn to caregivers for help.
How can we start to recognize family caregivers as key players in our healthcare system? We could start by looking to and changing basic definitions, such as the definition of illness.
As English philosopher Havi Carel put it, healthcare professionals tend to see illness “as biological dysfunction” and as “physical facts alone”. In an attempt to change the way healthcare professionals look at patients, and to facilitate the movement toward patients-centricity, she suggests seeing illness “as a way of living, experiencing the world and interacting with other people” or simply as a “life-transforming process”.
Can this alternative definition also lead to recognizing all family caregivers as members of a health team? As a family caregiver, I believe so. I think it is possible to customize Carel’s definition in order to promote the recognition of family caregivers within the healthcare system. Let’s go over the definition again and let’s change the focus to family caregivers. Viewing "illness as a life-transforming process” suggests that a disease not only affects patients but also the people around him or her, and if we accept that “illness as a way of living, experiencing the world and interacting with other people,” then the picture provided by a patient – to the health team – would not be complete without insights provided by his or her family caregiver. This translates to changing behaviors which are deeply embedded in daily healthcare practices. Once recognition happens, the rest will follow; like any other group, the health team has to take care of all its members – including family caregivers!
By Sara Shearkhani
Sara Shearkhani has been a family caregiver to her husband, a cancer patient, since 2012. Before his diagnosis, she was a Ph.D student of Economics, but life after cancer prompted her to switch to health policy and management. She is now a patient and community engagement researcher with the goal of becoming a Ph.D student in the near future.