Family Caregiver Investigation

  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...

  In the month of April the primary caregiver provided 531.75 hours of caregiving time, 74% of the overall time needed to look after Mom.  This is a family caregiving setting. This is the work being done by the family to take care of their Frail Elder (FE). The primary caregiver is the second eldest daughter. She moved her mother home into the basement suite of her house, and moved into the guest bedroom to provide live-in care at home. This is the work being performed by a family as part of the overall healthcare system, essentially their family caregiving contribution is a sub-system of the main institutional healthcare system. This is a significant amount of work and there are no health and safety, worksafe, or labour laws that govern the situation that the caregiving family is managing and operating. At present, the work of family caregiving is virtually untraceable and unaccounted. 

  There is an economic imperative to address impacts resulting from continuing, escalating and exacerbating family caregiving socio-economic vulnerabilities. We need to think in terms of risk management and looking at the opportunity costs of leaving family caregiving vulnerabilities unattended. When family caregivers can no longer provide for their family members who cannot fend for themselves, the burden on the institutional system is at least a 1:1 ratio - ie. family caregiver home is no longer available and family member is now put into institutional setting. However, we also need to consider the health, financial, mental and emotional impacts that the family caregiver is now going through. It is likely they are now also seeking institutional supports in the healthcare sector, but also possibly in the employment, financial, and housing sectors. There is an economic imperative to understand the tax on family caregiver resources that is unaccounted and untraced in the current sit...

  The systems imperative of this research speaks to the pending systemic failure when family caregiving reaches its inevitable breaking point.  The negative impacts of family caregiving on family socio-economic vulnerabilities escalates the longer family caregiving is needed to provide care to a family member that cannot fend for themselves. The declining health of the family member as they reach the end of their life exacerbates the impact of negative socio-economic vulnerabilities on the caregiving family.  When all family caregiving households are evaluated in relation to the overall impact they are having in providing caregiving infrastructure to the healthcare system, these caregiving households can be considered part of the system, caregiving households can be considered as a sub-system of the overall caregiving infrastructure. We need to understand the volume of operations being carried out in family caregiving households in relation to the overall healthcare careg...

  The ethical imperative to reverse the negative socio-economic impacts of family caregiving are written across the Internet in tens of thousands of anguished posts written by family caregivers in high degrees of distress and hopelessness.  Family caregivers express their feelings of disempowerment, of feeling taken advantage, of feeling taken fore granted, of how their lives have been consumed by caregiving responsibilities and they cannot see a future for themselves.  The work they do is untraceable, there is no authoritative oversight. The work they do is unaccounted, the time and energy they put into caregiving is not recognized as employment.  They find themselves in an impossible dilemma - they cannot, in good conscience, leave their family member to suffer or risk mistreatment from strangers; they also cannot, materially, financially, emotionally and mentally, sustain the level of output to family caregiving without suffering (their own health, the quality of ...

  The objective of this research initiative is to reverse the persistent issue of family caregiver's negative socio-economic impacts as a result of taking on the responsibility to provide caregiving infrastructure to a family member or friend who cannot fend for themselves. The negative impacts are well-documented. The risks to family caregiver well-being are being addressed, but there is a critical gap in the approach to improving family caregiver health and well-being. This critical gap is the problem of conceiving family caregiving as an individual undertaking and attempting to support individual family caregivers on a case by case basis instead of taking a comprehensive look at family caregiving as a system and addressing the deficiencies in system integrity across all caregiving family households. The four arguments map onto the four stages of research proposed in the Research Overview. These four arguments look at family caregiving from four different perspectives. Argument 1...

  It is time to elevate our concepts of family caregiving from individual, private family-based caregiving to see it as an integral, critical part of our overall healthcare system. To elevate our concept of family caregiving to a systemic perspective, we need to understand how each individual family caregiving setting is actually part of a systemic whole. We need to acknowledge the individuality of each family caregiving setting, and we also need to learn how each family caregiving setting shares operational realities that can be generalized across households. This means that we take into account the many variations of individual family caregiving that are unique for every family, and we don't let that get in the way of formulating a systemic response to the issues shared across households. The collective impact of negative socio-economic vulnerabilities need to be addressed as a systems issue, not an issue of individual, isolated families and households. This research overview mov...

  " We are thrilled to announce that your submitted health research topic,   “Cost-effectiveness of home care versus assisted living facilities for individuals requiring additional supports”   has been selected as one of the 20 priority topics for funding as a research project by the SPOR Evidence Alliance."  Canada's Strategy for Patient-Oriented Research (SPOR), created by the Canadian Institutes of Health Research (CIHR) I submitted my health research topic last year in September 2022. At that point I was approaching my first anniversary of caregiving for my frail elder mother, who moved in with me on November 1, 2021.  Mom's birthday is November 1, 1930. She had just turned 91 when she aged out of her place in mental health group housing, where she had lived since 1982.  Throughout the summer of 2022 I had struggled with my own health and well-being as an inordinate proportion of the work of caring for Mom had fallen to me and my husband. I did not know...