Our interview data shows that primary caregivers of older individuals lack guidance when it comes to navigating the paid care system and other bureaucratic aspects associated with elder care. Having to learn this on their own often means that finding care for an older parent becomes a much longer, more difficult, and more expensive process than it needs to be. This lack of education and direction for family members looking to care is reflected in the literature. Stajduhar et al. discuss the necessity of providing adequate instruction for caregivers of palliative patients, in the context of both at-home care and care facilities, in order to determine and arrange the best quality of care possible (Stajduhar et al., 2013). An improvement needs to be made here in order to allow for more effective care outcomes and reduce the stress on caregivers.
I spent a lot of time and research on my own trying to figure it out. And it took a long time and I would get, you know, five steps forward and have to go ten back. So it was very complicated. I was — I would have been on the phone for hours and hours.
SC30 described her experience trying to navigate the elder care system when she became responsible for her father’s care needs. She outlined the lengthy process of trying to become her father’s power of attorney: “I spent a lot of time and research on my own trying to figure it out. And it took a long time and I would get, you know, five steps forward and have to go ten back. So it was very complicated. I was — I would have been on the phone for hours and hours” (SC30, 2023, 00:37:46). Based on these experiences, she suggested that the government provide some kind of liaison for caregivers in order to guide them through the complicated and emotionally draining procedure.
SC21 expressed similar concerns but also discussed the need for support not only from the government, but also the need for guidance from care workers and nurses regarding how to provide care. She described a disconnect between paid care workers and unpaid (usually family) caregivers, which is also reflected in the literature (Reinhard et al., 2008). SC20, on the other hand, acknowledged that he was able to set up care for his parents with relatively little stress because of his familiarity with the healthcare system and the personal contacts he had within it. Even he, however, was aware that the healthcare system can be very difficult to navigate for those without the same knowledge and awareness that he held as a physician.
While this theme is most prevalent in senior care interviews, it was also present in childcare interviews. Some parents caring for their children (ex. CC37, CC36) expressed similar frustrations with the paid childcare system. They also suggested that the government should offer clear guidance on what to consider when choosing a suitable childcare facility and how to navigate the paid childcare system more effectively.
Chappell, N. L., & Dujela, C. (2009). Caregivers—Who Copes How? The International Journal of Aging and Human Development, 69(3), 221–244. https://doi.org/10.2190/AG.69.3.d
Reinhard, S. C., Given, B., Petlick, N. H., & Bemis, A. (2008). Supporting Family Caregivers in Providing Care. In R. G. Hughes (Ed.), Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Agency for Healthcare Research and Quality (US). http://www.ncbi.nlm.nih.gov/books/NBK2665/