SPOR EA - Cost Accounting for Long-term Care Beds - Methodology - Approach

INTRODUCTION

Ferris Wheel - written by Jenny Arntzen, performed by Jenny Arntzen and Barbara Jackson at the 411 Coffeehouse on Friday, July 11, 2025

My name is Jenny Arntzen and I have a PhD in social science (Faculty of Education, UBC) and I am a certified professional project manager (PMP). I am the Patient-Partner Co-Lead on this project. It was my topic submission that was funded by SPOR EA to conduct a Scoping Review.

I am an artist and musician. I make sense of my experience through creative works inspired by the constraints and challenges of daily living. These creative works are included in these articles in hopes of broadening perspectives and deepening understanding of the invisible work of family caregiving.

This article is the fourth of a series of ten pieces presenting a project funded in 2024 by the Strategic Patient Oriented Research (SPOR) Evidence Alliance. The subject of this series of short articles is to look at evidence-based cost accounting for operating long-term care beds. The goal of this work is to be able to compare the cost of operating long-term care beds in institutional and home-based settings. The objective of this work is to be able to answer the question, "At what cost, to whom?" when we transfer the cost of operating long-term care beds from institutional settings to home-based settings.

In this article we share our methodological approach to explain how we collected the data reported in this project. We combine formal reports from health research (Scoping Review) with first-hand lived experience of operating a long-term care bed in a home-based setting (Family Caregiving). Our approach provides a unique view into health research and family caregiving perspectives.

The theme song for this article is called, "Ferris Wheel". I wrote it to process and make sense of these cycles of life that are inevitable and essential to understanding how we plan for caring across our lifespans. The lyrics from the song intersperse the article.

We followed established guidelines and protocols to study existing health research that investigated quantifying cost accounting in long-term care across diverse settings (institutional to home-based beds). The Scoping Review provided insight into the current state of formal research into operating long-term care beds in any setting. Based on our early findings from the Scoping Review, we decided to include the data I had collected during my Family Caregiving time to quantify the cost of operating a long-term care bed in a family home. For data collection from a home-based setting, we applied the practice standards and frameworks from the Project Management Institute (PMI), taking advantage of my role as a professionally certified project manager.

2023 04 04 937am - An (Un)Still Life
We did not plan to be family caregivers. Or more precisely, we did plan for the reality of providing a healthcare bed in our home.

We planned to travel. We planned to get an education. We planned to pursue a career. We planned to be married. We may have planned to have children.

We may have had some vague notion about what would happen with our aging parents, likely based on previous experience with our grandparents or other family members of friends and relatives.

We may have believed that we were prepared to bring home a frail elder, a nephew after a motorcycle accident or a grandchild suffering from PTSD.

"My life is a ride on a ferris wheel, tilting to the sun, I ride to the top and come down again, until I reach the ground."

There were many moments during my caregiving time, that I felt utterly alone and abandoned by my healthcare system and my society. I could not understand how I could be left with such monumental responsibilities, unending demands on my time and energy, and minimal, inadequate supports.

Our approach to methodology for data collection, synthesis, discussion and conclusions was specifically designed for two main areas of research activity: Scoping Review, and Family Caregiving (Lived Experience). In this article we provide insight into the details of methodology approach for each of these main areas. In common across cost accounting research into diverse settings was the the work of operating a long-term care bed - how do we account for the Time (labour) and Materials (facilities, supplies, equipment, etc.)?

1. SCOPING REVIEW

We used well-known methods for studying the research literature to learn what studies had been published to report cost accounting in long-term care for the Scoping Review. The Scoping Review followed the PRISMA method to report results of our systematic review of the research literature. PRISMA stands for Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

We had the support of the University of British Columbia library services, including a senior research librarian. The research team was comprised of a university-based team: health economist (co-lead), research scientist - evidence synthesis, research coordinator, research scientist - economic modelling and graduate research assistant. We had one patient-partner who served as co-lead on the project.

Our research team worked in collaboration with a senior university research librarian to scan collections of published research for potentially suitable studies for further analysis. We went through several rounds of testing search terms to learn what would yield viable results.

2. FAMILY CAREGIVING

We were not able to find any existing studies that showed a methodology for studying cost accounting in either an institutional long-term care or a home-based setting. Our response was to use industry-standard project management methods to quantify and report the work being done in our single case study of a home-based caregiving operation.

We used Project Management Institute (PMI) practice standards and frameworks because they are designed to plan, track and report progress across the project life-cycle, including comparative analysis between Planned expenditures (Time and Material) and Actual (% Scope/Schedule/Budget Complete) results. PMI practice standards and frameworks are designed for transparency and accountability, as well as manageability. We applied these standards and frameworks to collect and report Time (labour) expenditures, and Material (financial) expenditures on behalf of the family caregiving household.

For this report, we used an autoethnographic methodological approach to report the cost accounting data we collected using project management techniques. We had a case study of one household that collected Time and Material cost accounting data over a 33 month duration.

Later, we conducted a proof of concept for quantifying home-based cost data to enable comparative analysis with similar institutional cost data using a framework derived from the studies collected in the Scoping Review.

My background in the social sciences provided a basis for conceiving the work I was doing to study my own lived experience as family caregiver using autoethnography (self-study). I did not have a pre-defined set of data or questions I was seeking to answer. Rather, I had a sense of the importance of what I was doing and the need to collect everything I could, on a day to day basis. As the duration of our caregiving operation continued beyond our first six-month milestone and then our second six-month milestone, I realized I had a responsibility to report the Time and Material costs, as well as medical history and caregiving activities to my family as well as have information on hand to answer questions from Home Support, Palliative Care Nurse and Mom's GP.

One of the big differences in methodology between the theory of PMI practice standards and frameworks and the realities of operating a long-term care bed 24/7 for a frail elder with complex needs is the issue of "Time Confetti". This refers to a daily inundation of tasks that are too small to track and measure as singular events but aggregate into an overwhelming mental, emotional and physical burden, especially when there is not respite to reset stressed caregiver bodies. After attempting to parse the day to day operations of running a long-term care bed in my family home I had to abandon the effort. The number of tasks and time amounts were too small to track in a meaningful way. Instead, I measured all the hours I was on duty as Mom's caregiver and then listed out the many different roles I played to manage, administer, and execute tasks to sustain the operation.

Mom was happy to be home. She had spent 40 years in mental health group home system due to her mental illness. We finally brought her home when she aged out of that system and we were not comfortable putting her into an unknown institutional setting, knowing she could not fend for herself. Our home became her home, a hub of creative works, creative activities and innovative management practices to ensure Mom's health and well being while we followed Mom's end of life wishes to, "let nature take its course".

3. GROUP DISCUSSION

The contributions from the group discussions were part of our methodological approach. We gathered health leadership representatives from various local health organizations to share our findings and comment on what we had learned. Their comments and questions highlighted elements of the research that needed to be brought into future research priority setting. In terms of methodological approach, the component of sharing and inputs from health leadership, stakeholders and decision-makers was essential to ensuring the work is achieving its highest levels of relevance and impact.

On May 13 we asked our online attenders to share what brought to our knowledge mobilization event. We invited attenders to take a moment to share their interest in the Zoom chat.

"Interested in Patient/Citizen initiated/ co led research, and improving quality of life for seniors"

"The research is relevant to our daily work"

"To support families and understanding the implications of institutionalization vs home based care"

"this information directly correlates with our teams works monitoring and improving LTC & HC services in the NWT"

"research in seniors care is of interest to understand how to best serve our aging population in the LTC sector"

"interested in aging and health initiatives for older adults across North America"

"interested in learning from local evidence, and interested in the research team's ideas around applying evidence to practice in the health system"

"interested to learn how as a system we can better support families and clients across the lifespan to live optimally according to their needs and goals"

"Interested in research related to seniors and long term care and how we can use learnings from this research to improve the care we provide"

"Direct relevance to my work in guiding LTC strategy"

"appreciate that the focus of this research is on older adults, there are many parallels with pediatrics for children living with medical complexity"

"recently participated in developing Decision aid tool on interventions that increase the quality of life for elders living with neurocognitive disorders"

"involved in embedded research in long-term care"

Our methodological approach included the contributions from attendees to our May 13 knowledge mobilization event. These contributions shed light on existing perspectives and understandings, they also brought forward concepts and concerns that we had not included in our presentation.

One of the questions that came up during the group discussions was, "What would happen if family caregiving households went on strike and refused to provide care for their care recipients? The healthcare system is depending on the infrastructure of long-term care beds provided by home-based caregiving. There aren't enough long-term care beds to accommodate existing needs, much less predicted needs as baby boomers enter the age of needing extra help to manage their needs for routine functions of daily living."

CONCLUSIONS

The PRISMA-ScR process brought up questions that we had not previously considered, "How many health research studies were published during our Scoping Review timeframe (2014 to 2024)?" "What percentage of funded research was focused on long-term care as a research priority?" "What percentage of funded research focused on long-term care in home-based settings as a research priority?".

In terms of research priority setting, the fact that the PRISMA-ScR process yielded only 37 studies for inclusion in the Scoping Review, reveals a gap in perception and understanding of the significance of our societal need to understand and plan for long-term care infrastructure, including the role home-based caregiving beds play in sustaining the healthcare system.

In the absence of research demonstrating evidence-based cost accounting methodologies to study long-term care and specifically the work being done by family caregiving households, we adapted project management techniques and protocols to collect our own data.

As primary caregiver for my Mom, I developed my own dataset during my caregiving time to report expenditures for time and materials. I needed to accurately report these numbers to:

engage family support to prioritize Mom's care needs;
maintain accurate records of changes to Mom's health and the results of implementing instructions from medical professionals;
preserve a rigorous record of caregiving work in case there was an audit or other investigation;
manage for high risk potential, ensuring I would have contemporaneous notes and numbers should my caregiving decisions ever come under scrutiny.

The methodology we developed for this study demonstrated a viable approach to collect, analyze and report cost accounting data across diverse caregiving settings, including home-based operations.

One fundamental point brought forward from the small group discussion was, "Who is responsible for the cost of providing long-term care for our frail elders with complex needs?" "When is it the responsibility of our society to contribute to the cost of this care because it benefits the health and well-being of our social collective?" "When is it the responsibility of each individual, and their families, to pay for the cost of care for our frail elders with complex needs?" "How do we, as a society, make a determination of how these costs are attributed?"

We will not know how, or when to attribute cost for supporting long-term care infrastructure across diverse settings without an adaptive, agile methodological approach to cost accounting for these operations. In terms of research priority setting, we must elevate these conversations and make visible that which is hidden but impacting our social systems. We will not know the impact of unaccounted costs for long-term care until we establish research priorities and methodologies to study the time and material expenditures we are already incurring, not to mention the predicted costs incoming over the next two decades.

=========================================================================

Strategic Patient Oriented Research (SPOR) Evidence Alliance

COST ACCOUNTING FOR LONG-TERM CARE

Table of Contents

Introductory - Follow up / Thank You - 0/10

Introduction - Context - 1/10

Introduction - Project Development - 2/10

Problem to be Addressed - 3/10

Methodology - Approach - 4/10

Methodology - Data Sources - 5/10

Findings - Material Cost - 6/10

Findings - Time Cost - 7/10