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Published in final edited form as: Healthc (Amst). 2021 Oct 20;9(4):100591. doi: 10.1016/j.hjdsi.2021.100591

Developing a person-centered, population based measure of “home time”: perspectives of older patients and unpaid caregivers

Nina R Sperber 1,2,*, Abigail Shapiro 1, Nathan A Boucher 1,3,4,5, Kasey P Decosimo 1, Megan Shepherd-Banigan 1,2,4, Chelsea Whitfield 1, Susan N Hastings 1,2,5,6, Courtney H Van Houtven 1,2,4
PMCID: PMC10442891  NIHMSID: NIHMS1922490  PMID: 34688200

Abstract

Measuring “home time,” number of days not in facility-based care, with medical claims is a promising approach to assess person-centered outcomes on a population level. Generally, spending more time at home matches long-term care preferences and improves quality of life. However, existing “home time” measures have not incorporated key stakeholder perspectives. We sought to understand how patients and family caregivers value time spent in diverse facility-based health care settings (Emergency Department, Nursing Home, Post-Acute Care/Skilled Nursing, Inpatient Hospital) to help determine whether various settings have different effects on quality of life and thus merit different weighting in a “home time” measure. We conducted three focus groups among patients and family caregivers within the U.S. Veterans Health Care System. We identified themes pertaining to patients’ quality of life in each of the four facility-based care settings. Discussions about both emergency department and post-acute/skilled nursing care reflected loss of personal control, counterbalanced by temporary stay. Inpatient hospital care evoked discussion about greater loss of personal control due to the intensity of care. Nursing homes ultimately signified decline. These findings illuminate differences in quality of life across health-care settings and help justify the need for different weights in a measure of “home time.”

Keywords: Aging, Long term care, Person-centered measure, Qualitative, Quality of life

Introduction

U.S. laws and policies have increasingly supported preferences of adults who need long-term care to remain at home as long and safely as possible. 1,2,3 Over the past approximately twenty years, there has been a trend toward rebalancing long-term services and supports for a more equitable distribution of resources devoted to community-based versus institutional care. 2,3 In line with policy changes to support individuals’ preferences for home care, measuring “home time,” also known as “days alive and at home,” as a person-centered quality of life and health care system performance metric has gained popularity in a broad number of clinical areas (e.g., cardiology, cancer, knee replacement, end of life care). 4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21 Early literature focused on days at home as a quality of care measure in a hospital episode, anchored by an event such as surgery or heart attack.22 Most recently, home time has been proposed as a measure of organizational performance. Many of the details on what settings to include and what weights to use, however, still are under discussion.23 Currently, Alternative Payment Models by CMS, such as Primary Care First (PCF) and Direct Contracting which aim to improve care and quality of life for its enrolled patients, are testing home time as a performance measure. Thus, governmental agencies currently are testing whether home time can closely reflect performance at an organizational level. If it can, then home time measures could be used to make value-based payments to accountable care organization (ACOs) if they achieve thresholds of days at home for defined patient populations (e.g. seriously ill, dementia).

A “home time” measure affords a relatively simple and standardized way to measure person-centered outcomes on a population level, and yet existing studies have not incorporated perspectives of key stakeholders, namely the patients and unpaid caregivers who support them. If more home time reflects gains in quality of life, then it is a very appealing measure given the difficulty of obtaining self-reported data on quality of life for large populations, especially when cognitive impairment is present. One simply has to obtain medical claims data to count the included facility-based care settings for a number of days at home, i.e., not in facility-based care. However, there is ambiguity about equivalence of different settings within the continuum of care for one’s quality of life.22 In addition, important settings of care, such as emergency departments, remain largely unexplored in prior claims-based studies.19,21 Knowing how time spent away from home in different health care settings help or hinder older adults, as well as what they lose or gain from being in a given setting, can help with evaluating the quality of their lives and what matters to them.

Understanding how patients and caregivers value time spent in care settings for their quality of life is an important step in assessing person-centeredness of claims-based measures of “home time.” We conducted focus groups with Veterans with functional impairment and unpaid caregivers of Veterans with functional impairments to elicit perspectives about patient quality of life in different facility-based care settings. The results of these focus groups help us to understand the value of home time from the perspectives of patients and caregivers who support them to design a “home time” measure that has taken into account actual lived experiences.24

Methods

We conducted focus group discussions between November 2019 and February 2020. To understand how patients and their caregivers prioritize different care settings according to how they affect patient quality of life, we used a variation of the nominal group technique, a structured approach used to determine collectively priorities for a specific problem.25,26,27,28 We obtained input on data collection and analysis from two stakeholder groups, one consisting of VA patients, the Durham VA Veteran/Caregiver Representative Panel (VetREP), and the other consisting of research and policy experts, the ASPIRE project’s expert stakeholder group.

Recruitment

We purposefully recruited focus group participants for representation of race/ethnicity and experiences with different types of days not at home (Emergency Department, Nursing Home, Post-Acute Care/Skilled Nursing, Inpatient Hospital).29 Eligible patients received services in the Durham VA Health Care System from geriatrics primary care, Home Based Primary Care, inpatient social work, VA Homemaker and Home Health Aide Care, or the Caregiver Support Program. Staff obtained permission from those clinic leads and sent letters to active patients within these clinics who may be at high-risk of using long-term care services or their friend or family member caregivers. Caregivers were eligible to participate if they currently provided care for a Veteran receiving such services (e.g., not professional, paid care providers). Veteran patients and caregivers were not recruited as dyads, but a caregiving relationship between study subjects was not an exclusionary criterion. All participants provided informed consent. The study was approved by the Durham VA Medical Center institutional review board.

Data collection

We conducted three focus groups, one with Veteran patients and two with family caregivers, each lasting approximately 2 h. We had planned to conduct a total of six focus groups, three with Veteran patients and three with family caregivers; however, we had to cease recruitment mid-way due to shutdowns from the COVID-19 pandemic. An experienced moderator (AS or NB) led each group with additional study team members present to assist with consenting and notetaking. Prior to discussion, participants completed a brief questionnaire for an understanding of participant characteristics. Discussions centered on value and tradeoffs for quality of life in the different care settings and included two parts. The first part focused on how time in specific settings affected quality of life. The second part included the modified nominal group technique in which participants ranked the care settings in order of best to worst for quality of life, discussed their choices, and then had an opportunity to re-rank and discuss any changes influenced by the prior discussion. We provided cards with images and labels representing the different settings for participants to sort, with the best on top and worst on the bottom. With each round of ranking, a study team member tallied the results on a board to identify the best or worst settings overall, and the moderator queried the group about the relative values (e.g., “Could someone please explain why it is best? Worst? What would you say are tradeoffs?”) We received input on approach and questions from the Durham VA VetREP, who reviewed our materials and provided feedback. See Appendix for moderator script.

Data analysis

We analyzed data during the data collection period to monitor emerging themes. A qualitative analyst (AS) reviewed transcripts and notes after each focus group, using directed coding30 to categorize quotes about the care settings by type (i.e., text segments having to do with emergency departments were coded as “emergency department”). For each care setting, she then developed a memo that included direct quotes from patients and caregivers, a further level of generative coding to conceptualize and interpret the quotes (e.g., “fear of abandonment” or “sense of safety”),31 and an overall summary interpretation of discussions about the specific setting. Memos were revised iteratively as new ideas emerged after each focus group using a “reading for gestalt” approach to avoid neglecting broader ideas that can be obscured by discrete coding labels.30 After three focus groups had been conducted, the team reviewed each memo and discussed as a group to evaluate validity (e.g., Did the summary and interpretation resonate with the supporting data and with what others heard from the focus groups or read in the transcripts?). During this time, in-person study activities were suspended due to the COVID-19 pandemic. A qualitative analyst (AS) reviewed the transcripts and memos for thoroughness and created matrices to understand similarities and differences across groups on the settings and topic themes. Finally, three team members (AS, NB, and NS) reviewed the coded data to identify through discussion and consensus 30,31 salient themes that helped to tell the story of how Veteran patients and family caregivers relatively valued care settings for their quality of life.

Results

The two family caregiver focus groups included nine and five participants respectively; the Veteran patient focus group included six participants. The average age of participants was 68.

See Table 1 for participant characteristics.

Table 1.

Focus group participants (n = 20).

Caregiver Veteran
n = 14 n = 6
Gender, %
Male 1, 7% 6, 100%
Female 13, 93% 0
Age, mean (min., max.) 64 (36, 79) 79 (69, 89)
Veteran status 3, 21% 6, 100%
Race, %
White 8, 57% 3, 50%
Black 6, 43% 2, 33%
Native Hawaiian/Pacific Islander 1, 7% 0
American Indian/Alaskan Native 0 1, 17%
Ethnicity, %
Not Hispanic/Latino(a) 14, 100% 6, 100%
Education
Less than high school 0 0
High school graduate/GED 1, 7% 1, 17%
Trade/technical/vocational school 1, 7% 0
Some college credit but no degree 4, 29% 1, 17%
Associate degree (AA or AS) 1, 7% 0
Bachelor's degree (BA or BS) 1, 7% 1, 17%
Post-graduate work or graduate degree 6, 43% 3, 50%
Distance from VA
0 to 20 miles 7, 50% 4, 67%
21 to 40 miles 3, 21% 2, 33%
41 to 60 miles 3, 21% 0
61 to 80 miles 1, 7% 0
81 to 100 miles 0 0
101 miles or more 0 0
Household financially strained, % 2, 14% 2, 33%
Veteran health care experience (any)
Emergency department 12, 86% 5, 83%
Inpatient 7, 50% 5, 83%
Post-acute care 5, 36% 0
Nursing home 3, 21% 2, 33%
Respite care 4, 29% 0
Adult day health care 5, 36% 0
None 1, 7%
Years of caregiving, mean (SD) 8 (8) –
Caregiver relationship to Veteran
Spouse/significant other 10, 71% –
Parent 2, 14% –
Child 1, 7% –
Grandchild 1, 7% –
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Emergency department: front door to further care

The emergency department represented a short stay with temporary tradeoffs for quality of life, on the way to patients getting what they need. Patients and caregivers described how emergency department visits arise when a problem has come to an acute stage requiring a decision, appreciating that the emergency department helped them obtained relatively fast answers about what caused the patient’s problem, making it safe to return home or getting them “in the pipeline” for appropriate care. However, they suggested that this access came with reduced personal control, with uncertain processes and outcomes affecting quality of life at that time in that setting. For example, they described the difficulties of unpredictable wait times. One patient said, “I spent 10 h there and … next morning [they] woke me up and gave me tests [and] wanted to put me in a room but [there was] no room yet … I said to doctors I am just going to get worse [and] … got them to release me and I stayed at home.” Veterans and caregivers also described frustration with poor communication in the emergency department. A caregiver said, “I have no clue what’s going on [and] a lot of confusion on how critical we are.” Also, they discussed challenges with not knowing which provider they will see. Ultimately, though, they said that this effect on quality of life was temporary.

Post-acute care/skilled nursing: home on the horizon

Although patients and caregivers alike reported some loss of control in post-acute care/skilled nursing facilities, overall they indicated that these settings had less negative affect on patient quality of life than the others. In particular, caregivers discussed tradeoffs for patients in these settings. They said that this setting, although a short stay like the emergency department, offers patients more of a say in their care than the other settings. Caregivers further described the structure at post-acute care/skilled nursing facilities as less rigid and more responsive to patients’ needs than at hospitals and nursing homes. As one caregiver said, “I feel that the structure isn’t as automatic as others. Hospitals do their routine and nursing homes, same thing. They do what they want to do, they won’t listen to your wishes.” Additionally, post-acute care/skilled nursing facility stays remained hopeful, with caregivers describing patients in those settings “on the way to recovery” with a goal of going home. The time-boundedness of post-acute care/skilled nursing facility stays (both for recovery and respite) made it easier for participants to accept this institutional care compared to the nursing home.

Inpatient care: stay in your bed, we got it

Participants described inpatient care as high intensity care for complex needs; the necessary care creates improvements in health-related quality of life; however, inpatient stays also bring significant loss of personal control. One patient described it as a “very focused and on-top-of-it situation.” However, inpatient hospital staff were regarded as not necessarily responsive (or best suited to respond to) to patients’ needs, such as mobility, bathing, and toileting. One caregiver said, “He’s glad to be back home … he got up and walked to the toilet. … they kept my daddy in the hospital so long that he lost mobility.” Caregivers also reported needing to educate providers about a patient’s complex needs as an extra duty. “Very few providers [locally] really understand ALS … He had to have his gallbladder out … And so I had to do a lot of education of the surgical team.” Participants said that patients with cognitive issues or mental health issues face additional challenges as inpatients. As one caregiver of a Veteran patient with post-traumatic stress disorder (PTSD) described, “Paranoia doesn’t begin to explain it; I’m the only person he trusts 100% to be there. I have to be there, I just have to be because he does not trust anybody.” The same caregiver also mentioned instances of nurses and doctors failing to administer medication properly, which worsened her Veteran’s condition and increased his paranoia.

Nursing home: never home again

Similar to inpatient care, participants said that patients have less personal control in nursing homes compared to the other care settings, however, for a longer period of time. They described nursing homes as indicative of declining health and as such, poorer quality of life. One caregiver said, “my grandfather …. seemed like he was, kinda like, withering away to me. He wasn’t getting out of the bed. He was basically in the bed the majority of the time that he was there.” One patient said, “… my observation has been these people don’t have much of a focus on the care and attention that an inpatient needs.” There was discussion in all groups about nursing homes as a less-than-desirable terminal stop. As one caregiver said, “Nursing home, tells me he’s never coming home again.” However, some patients appreciated that nursing homes could provide increased quality of life for themselves. As one patient, who resided in a nursing home, said.

For the most part, it’s better than me being at home, with my wife being strained. … They handle my meds, making sure I get to my doctor’s appointments. … there are activities there, and socialization … [I] maintain my good quality of life that I didn’t know I would have if I didn’t get the help I would have.

Limitations

Because we conducted fewer focus groups than planned due to curtailed recruitment during the COVID-19 pandemic, we aggregated data from patient and caregiver focus groups. Prior work on number of groups needed has shown that three focus groups tend to yield sufficient data for identifying key themes.32 While we were able to identify common themes from both patient and caregiver perspectives about patient quality of life in different care settings, future work should explore caregiver and patient perspectives separately to identify not only commonalities but also differences. Despite the relatively small number of focus groups, we believe that our interpretation of data from the 6 h of discussion with Veteran patient and family caregiver stakeholders adds value by shedding new light on how care settings may differentially affect quality of life for patients, an underexplored area. “Value-added” qualitative analysis techniques, which we used with generative coding and reading for gestalt, produces new insights and knowledge through acts of interpreting rather than merely summarizing data, a strength of this study.31 That said, these data come from VA health care users and caregivers of VA health care users at a single site and with particular characteristics (e.g., six of the caregivers and three of the Veteran patients completed post-graduate work or a graduate degree), which may limit generalizability of findings to other populations and settings. Future work can investigate similar questions at other settings and aggregate findings for a more generalizable understanding of quality of life for patients and caregivers across care settings.

Discussion

To use “home time”, which includes a count of days in facility-based settings according to claims data, as a quality of life measure, it is imperative to account for a non-equivalence of the included settings for quality of life. We had the opportunity to explore patient quality of life in different facility-based care settings through the eyes of Veteran patients and family caregivers. We found that quality of life in these settings depended on degree of control and length of time experienced by participants in each setting. This paper focuses on contributing notions about patient quality of life in different settings from caregiver and patient perspectives to develop “home time” as a quality of life measure. Our qualitative findings can help to develop a more person-centered measure. However, to fully develop a measure that does not have unintended consequences, such as incentives to discharge hospital patients too early to post-acute care settings when used as a performance measure, different types of data and approaches are needed.22

Emergency departments of hospitals are critical for illness identification and response and play important roles as early warning systems for further illness and functional decline.33 A relatively short-term stay in the emergency department during one’s evaluation is pivotal, but can be full of uncertainty regarding time, communication, planned treatments, and, ultimately, disposition – home versus hospital admission. Caregivers and patients alike experience these tensions in the emergency department as highlighted in our study where they described loss of personal control over care and uncertainties stemming from long waits with little communication. These very tensions are reflected in the literature on patient experiences in the emergency department setting.34 While, in our study, the experience of care may not have been equated with high quality of life during the duration of the stay, that stay was anticipated to be temporary and, therefore, manageable.

Likewise, the relatively short stays involved in post-acute and skilled nursing compared to nursing home care allowed our participants to see the possibility of home on the horizon. Perceptions of control played a role in quality of life ratings in this setting, with degree of control somewhere between an inpatient stay and home but with more certainty and stability than offered by the harried emergency department experience. While perceptions of autonomy in selection of and transition to post-acute care reveals largely passive participation due to active medical conditions, variable caregiver support, and the need to make a facility choice quickly and with an eye towards cost, 35,36,37 the actual experience of autonomy while in these facilities is underexplored in the literature. Post-acute rehabilitation has positive effects on functional outcomes and risk for longer-term nursing home admissions as well as mortality rates especially for older adults.38 The quality of life experienced in these post-acute settings could play a role in rehabilitation success and in the post-rehabilitation trajectory.

In our study, the experience of inpatient care was characterized as one of little autonomy and much rigidity, though it was noted that the rigidity was in place to help guide complex care needs. Nonetheless, quality of life suffered in this setting with frequent waking schedules for tests or treatments and regimented procedures designed for safety– but usurping control– such as mandated assistance to the toilet. For patients with special needs related to their diagnosis, such as ALS, caregivers felt that they needed to be vigilant and educate health care providers. Indeed, the caregiver relationship with health care providers in the inpatient hospital setting is at once an opportunity to share intimate care knowledge with professional staff and fraught with peril if professional staff do not take advantage of caregiver knowledge.39 These opposed scenarios can positively and negatively affect quality of care in the hospital and in the subsequent preparation of caregivers for discharge.40

Lastly, in our study, participants characterized the nursing home setting as one of relative permanence– largely absent the possibility of returning home. Caregivers did note, however, that the burden of caring was lifted for them in this setting if they so choose. As noted above, some caregivers did not like that loss of control and saw this as a negative characteristic of a nursing home stay. These findings reflect the literature showing nursing home residents’ dissatisfaction with degree of self-determination.41 Caregivers, especially spousal caregivers, are meeting several challenges potentially in this setting as well. These may include changing identities related to the relationship with the now nursing home resident, loss of companionship, and the anticipation of death.42

Conclusion

These findings help justify the need for different weights in a measure of “home time.” According to patients and caregivers, the emergency department and post-acute/skilled nursing care environments support better quality of life through recovery-oriented care with shorter stays. Inpatient hospital care imposes most restrictions for optimal quality of life. These findings combined with quantitative inquiries, such as estimating how more ‘home time’ with models that include different combinations of settings predict better person-centered outcomes (e.g. functional status, self-rated health), will allow a fuller picture for determining magnitude of weights for different settings. For example, if staying inpatient is shown through both qualitative and quantitative evidence to disrupt quality of life more than post-acute care/skilled nursing, then an optimally person-centered measure of “home time” may weight an inpatient day as 1.5 days away from home, whereas a day in post-acute care/skilled nursing could remain unweighted (e.g., One day is equal to one day away from home). Moreover, providers may find that these findings do not align with their assumptions about patients’ views of care settings. As such, a future study could focus on clinical practice implications, for example discharging earlier to post-acute care settings could be a person-centered strategy for clinicians and hospital systems of care. In addition, future work should compare differences in caregiver and patient perspectives and include differences by cultural/ethnic background, health condition, and assisted living experience. Caregivers may also have different perspectives on how patient time away from home affects their own quality of life, and this information would be vital to capture to inform policy investments such as investment in respite care, formal home health care, and other complements and substitutes for a system of long-term services and supports that relies primarily on unpaid caregivers.

Supplementary Material

Appendix A Supplementary data

Acknowledgments

We thank the Veterans and caregivers who participated in our focus groups. We also thank members of the ASPIRE team: Kelli Allen, Rebecca Bruening, Cynthia Coffman, Janet Grubber, Jennifer Lindquist, Matthew Maciejewski, Valerie Smith, and Karen Stechuchak. Lastly, we thank the ASPIRE stakeholder group for their valuable input.

Funding sources

This research is supported by U.S. Department of Veterans Affairs Research to Impact for Veterans (RIVR) initiative [grant number RVR 19–472]; the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham Veterans Affairs Health Care System (CIN 13–410). Dr. Hastings receives support from the Geriatrics Research, Education and Clinical Center at the Durham VA. Dr. Boucher receives support from a VA Career Development Award (#1IK2HX002407–01A2). Dr. Shepherd-Banigan receives support from a VA Career Development Award (# CDA 17–006 ).

Footnotes

Declaration of competing interest

The authors declare no conflict of interest. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official views of the Department of Veterans Affairs.

Appendix A

Supplementary data

The following is the Supplementary data to this article:

Multimedia component 1

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Supplementary Materials

Appendix A Supplementary data
NIHMS1922490-supplement-Appendix_A_Supplementary_data.pdf (446.9KB, pdf)

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