Family Caregiver Investigation

  Many of us have, or are, or will, face the question - should we bring our frail elder home instead of putting them in long term care? One of the realities of this decision is that your private family home will now be put into service as an unaccounted part of the healthcare system. You will be joining millions of family homes that are providing unfunded infrastructure to the healthcare system. What does this reality entail? First and foremost, you will now be responsible for overseeing and/or operating a 24/7 healthcare facility which means you will be actively managing over 700 hours of caregiving time every month (30 day month = 720 hours; 31 day month = 744 hours). Whether you cover this time yourself, with unpaid family and friends, paid professional, or limited service support from your local health authority, you will be responsible for the quality and level of care provided to your frail elder. How will you incorporate this additional role and responsibility to your existi...

  We have been going through a difficult month with Mom's health. Her digestive system was giving us information that it needed more dietary fibre and she needed to be a little more active. It was hard on Mom, as well as the rest of us, as we cleaned up one bowel emergency after another.  It has taken me two years to build up a family caregiving team that is (somewhat) manageable for me and my continuously depleting resources. As Mom grows weaker and her complex health needs require more time and attention there is an escalating overlap of needs increasing in relation to resource depletion. We live with this constant tension of completing the mission of looking after Mom and watching the burn down of our resources, hoping our resources outlast Mom's lifeline. It doesn't have to be this way. When we build strength in our family caregiving community, in particular enacting rational healthcare infrastructure systems to support family caregiving beds in family homes, we will be...

  What happens when a family is suddenly responsible for an additional 24/7 caregiving operation in their home? How does the family identify the new workflows, incorporate them into existing household management systems, and maintain these new workflows over an indefinite time?  What happens to existing household management systems when the work to support the family caregiving operation increases over time as the needs of the care recipient increase due to their failing health? What are the dimensions of care in a family caregiving operation?  How are individual work tasks identified, scoped, scheduled, budgeted and assigned?  Who is tracking the health and well being of the family caregiving operation? How is the quality of work being performed assessed, traced, reported? How are we going to manage millions of family caregiving operations providing billions of dollars of value to the economy?  What is the specific work that is being planned and completed?...

  Family caregiving responsibility is work that covers 24 hours a day, 7 days a week. In our household this responsibility has been assigned and managed on an ad hoc, normative, as needed, basis. Our family is following normative patterns for the assumption of family caregiving responsibilities - typically female, which also happens to redound to lead homemaker. We call it "Family Caregiving" because the work of caregiving is being carried out within a family setting as opposed to an institutional (ie. professional health provider) setting. A private family home is providing essential healthcare infrastructure. This private family home healthcare infrastructure is being executed, managed and administered by a private family member, often the female lead of the household. The work of caregiving - the day to day tasks that make up successful fulfillment of family caregiving responsibility, are often carried out by this same female lead, it may also be delegated to professional ...

  The purpose of this research is to provide a preliminary test case for collecting evidence based data to quantify the work being carried out in family caregiving homes. At present there is no data providing a thorough cost accounting of family caregiving infrastructure. There is no commensurate comparison of cost accounting comparing family caregiving infrastructure to institutional caregiving infrastructure. There is no evidence-based reconciliation of resource flows to institutional caregiving infrastructure in relation to family caregiving infrastructure. This modest proposal would start with a pilot study of a self-selected family caregiver to conduct an autoethography time/material cost study of work performed to provide family caregiving infrastructure.  The locus of the study would be the family caregiving bed. The autoethnography would study all work entailed in providing this caregiving bed. The term 'work' includes the time of caregiving, the labour that is provide...

  Hobson's choice -  1. : an apparently free choice when there is no real alternative.  2. : the necessity of accepting one of two or more equally objectionable alternatives. I have been thinking about family caregiving from a system's perspective and the impossible situation families are put in when one of their family is no longer able to fend for themselves. The family is put in the position of having to make decisions on behalf of their family member to ensure the family member's health and well being. There is no choice in this situation. The family must step in to support their family member.  The Hobson's choice would be to either step in and support the family member or to step away and not support the family member. Both of these scenarios carry a great weight of responsibility and requirement for internal and external negotiation. We may tell ourselves that we have a choice and it is unthinkable that we would not step in to support our family member, no mat...

  There are 24 hours in a day that need to be covered in a family caregiving setting to make sure the family member is never alone. In a month of 30 days, that amounts to 720 hours of caregiving. In a month that has 31 days, that amounts to 744 hours. From the perspective of scheduling and calendar management, the family caregiving home is providing caregiving time and attention, they are also providing schedule management - who is arriving, when are they leaving, what are they doing; medications, doctors appointments, nurse visits, medical procedures; housekeeping; meals, groceries, food preparation, dietary considerations; etc. We need a properly comprehensive list of all the work being done in a given family caregiving home.  I am reminded again today of the ethical imperative that we launch high quality peer-reviewed research of time/motion studies of family caregiving homes.  We need a traceable accounting of the true costs incurred by families providing care in lieu...