Getting Back to Normal: A Grounded Theory Study of Function in Post-hospitalized Older Adults

Abstract

Background and Objectives

The literature on transitions after hospitalization is based on a medicalized model focusing primarily on medication management and readmission, but little is known about the process older adults engage in to maintain their normal life posthealth event or how older adults define what the transition is. This grounded theory study aimed to describe how older adults understand and define a transition process, what actions they take based on their understanding, and what consequences they experience as they transition.

Research Design and Methods

Adults aged 65 and older discharged from a large Midwestern teaching hospital (N = 14) were interviewed using in-depth one-on-one interviews. Data were analyzed using open, axial, and selective coding.

Results

All participants described the process of transition as moving from a state of normal function to loss, and then working back to a normal state. A conceptual model was developed to illustrate the complexity of movement related to how older adults understand and manage the transition. All participants described starting out being normal until they experienced a major health event (acute or chronic illness). Losing normal involved experiencing a lower level of function both inside and outside the home. Working back to normal was accomplished by two different pathways: those “working to regain” focused on getting back to the level they were at prior to the major health event, whereas those “working to maintain” often involved redefining a new normal. The consequences of the two pathways were quite different, with those working to maintain describing several negative consequences.

Discussion and Implications

This study provides a detailed understanding of how older adults transition and the complexity of that transition. Findings provide a foundation for broadening our understanding of function beyond typical activities of daily living and reveal a more complex transition process that can span months to years.

Older adults frequently transition among care settings, such as hospital to long-term care or hospital to home (Coleman & Boult, 2003; Coleman, Parry, Chalmers, & Min, 2006; Kind et al., 2012; King et al., 2013; Naylor et al., 2014; Naylor, Aiken, Kurtzman, Olds, & Hirschman, 2011; Naylor et al., 2017). The transition from hospital to home has received increased attention in healthcare research and practice change over the past few decades as older adults account for more hospital discharges than any other age group (Centers for Disease Control and Prevention, National Center for Healthcare Statistics, 2012). The complexity of older adult health care and social needs make transitions among care settings challenging (Coleman, 2003; Coleman & Boult, 2003). Furthermore, healthcare reform (namely, financial penalties for institutions with high readmission rates) (Kripalani, Theobald, Anctil, & Vasilevskis, 2014) has emphasized reducing readmission rates in the first 30 to 90 days postdischarge (Naylor et al., 2011). However, the research conducted on transitions among care settings primarily focuses on medical management, leaving a significant gap in understanding how older adults experience a transition process with hospitalization and illness. Only a few studies exist that describe how older adults experience a transition (Boltz, Capezuti, Shabbat, & Hall, 2010). Results indicate that older adults perceive hospital discharge planning as only focusing on moving care from one setting to another and not on how to support them once they transition back to life at home (Greysen et al., 2014; Grimmer, Moss, & Falco, 2004; Walker, Johns, & Halliday, 2015).

Older adults often experience negative consequences, such as loss of functional status (ability to complete activities of daily living [ADLs]) during their hospital stay (Buurman et al., 2011; Helvik, Selbæk, & Engedal, 2013; Millán-Calenti et al., 2010; Wu, Sahadevan, & Ding, 2006; Zisberg, Shadmi, Gur-Yaish, Tonkikh, & Sinoff, 2015) with more than half not returning to their premorbid function in the first year postdischarge (Buurman et al., 2011; Huang, Chang, Liu, Lin, & Chen, 2013; Wu et al., 2006; Zisberg et al., 2015). Older adults who lose function are at higher risk for poor outcomes, including diminished quality of life, mortality (Buurman et al., 2011; Ferrucci et al., 1991), hospital readmission (Hoyer et al., 2014), institutionalization (Gill, Gahbauer, Han, & Allore, 2009; Harris-Kojetin, Sengupta, Park-Lee, & Valverde, 2013; Wu et al., 2006), and costly resource consumption (Greysen, Stijacic Cenzer, Boscardin, & Covinsky, 2017). Due to this high prevalence, the research on transitions postdischarge often measure older adult performance of ADLs with little regard to how older adults work to get back to their normal life prior to hospitalization or illness. However, Boltz et al. (2010) found that recently hospitalized older adults define physical function more broadly to include both mobility and enactment of life roles, routines, and relationships. Furthermore, Leidy and Haase (1999) revealed that patients managing illness relate function to a sense of effectiveness and connectedness. Given our limited understanding of older adults’ experience with transition after hospitalization and illness, further research is needed. This study aimed to describe how older adults understand and define a transition process, what actions they take based on their understanding, and consequences they experience as they transition.

Methods

Study Design

This qualitative study utilized grounded theory to examine the process of when and how older adults’ transition after a health event, for example, hospitalization and/or illness. Grounded theory, based on Symbolic Interactionism (SI), specifies that humans do not simply react to events, they respond based on their understanding of those events (Blumer, 1986; Charon, 2009). Grounded theory provides a structured approach to construct an interpretive understanding to explain participants’ experiences (Charmaz, 2014; Corbin & Strauss, 1990; Morse et al., 2009; Strauss, 1987). Because little is known about how older adults experience this transition process, grounded theory is the most appropriate qualitative approach to guide the study.

Study Participants

Participants were recruited from a large Midwestern teaching hospital prior to discharge. The study was approved by the University of Wisconsin – Madison Institutional Review Board prior to recruitment and instituting any study procedures. During recruitment, the first author obtained written informed consent after providing study information. Study inclusion criteria were: aged 65 years or older, scheduled for discharge home or subacute care, admitted to a non-Intensive Care Unit inpatient medical unit, admitted for at least 2 days, and able to speak and understand English. Exclusion criteria were: unable to provide consent or unable to share experiences following a hospitalization.

Sampling

We utilized two sampling methods consistent with grounded theory, purposive and theoretical. Purposive sampling was used to initially select individuals who had experienced a hospitalization and who would be representative of a broader group of older adults with similar experiences (Charmaz, 2014; Strauss, 1987). Once categories were identified and the researchers had become theoretically sensitized (having insight and giving meaning to the data) (Strauss and Corbin, 1998), the sampling method changed to theoretical sampling. Theoretical sampling, a hallmark of grounded theory, is used to elaborate and refine categories, and identify dimensions within each category and conditions that influence the interaction among categories (Charmaz, 2014). Theoretical sampling was conducted in two ways: (1) recruiting participants who could contribute to the development of emerging categories and a conceptual model and (2) creating additional focused questions to use with individual participants to fill in gaps, identify dimensions of categories, and identify conditions (Strauss, 1987; Strauss & Corbin, 1998). For example, once the categories of working were identified, participants scheduled for discharge to subacute care (prior to home) were recruited to better understand how individuals under different conditions engaged in work to regain or maintain their function. An example of using focused questions to theoretically sample occurred as follows. “Several participants described ‘losing normal.’ Can you describe what losing normal means to you and what you experienced?” Having participants describe their experience with losing normal allowed us to identify the dimensions of the category, Losing Normal. Consistent with qualitative research, we sampled individuals and events and occurrences that they experienced, which increased the richness of the data (Sandelowski, 1995). Sampling continued until data saturation was reached, meaning no additional categories or dimensions emerged from the data (Corbin & Strauss, 1990; Speziale, Streubert, & Carpenter, 2011).

Data Collection

A total of 22 participants were recruited. Four participants subsequently refused the interview and four could not be reached after hospital discharge and prior to data collection. Fourteen participants completed in-depth, one-on-one interviews conducted by the first author between September 2017 and June 2018. Participants ranged from 68 to 89 years of age (mean = 77), 64% (n = 9) were female, and 86% were white, non-Hispanic (n =12) (Table 1). Basic demographics were collected only to describe the sample. Consistent with grounded theory, sampling and analysis decisions were not based on participant characteristics, but the development of categories and dimensions emerging in the data (Strauss, 1987). All interviews were 30–75 min long, occurred in participants’ homes within 30 days of their discharge from the hospital, and were audio recorded and transcribed verbatim. Field notes were taken during interviews to note emphasis of words, expressions, and pauses that occurred.

Table 1.

Participant Characteristics (N = 14)

	Mean	Range
Age (years)	77	68–89
	n	%
Sex
Male	5	36
Female	9	64
Race
African American	1	7
White	12	86
Canadian Islander	1	7
Marital status
Married	8	57
Widowed	3	21.5
Divorced	3	21.5
Living Situation
Alone	5	36
With spouse or partner	8	57
With other family members	1	7

Initial interviews were largely nondirectional to allow for a rich description of participants’ experience of the transition process (Charmaz, 2014). For example, participants were asked, “Can you tell me about what it’s been like for you since you’ve been home from the hospital?” Follow-up questions became more focused to densify categories and dimensions emerging in the data (Corbin & Strauss, 1990). For example, when participants described a process of working back to a state of “normal,” a follow-up question became, “We’ve also heard about getting back to normal from other participants; can you describe ‘normal’?”

Data Analysis

Data analysis followed an iterative process with analysis, sampling, and data collection occurring concurrently and informing each other. Open, axial, and selective coding (Strauss & Corbin, 1998) was used to analyze the data. All members of the qualitative research team coded the transcripts first on their own (D. Liebzeit, L. Bratzke, and B. King) and then met weekly to discuss codes assigned to the data. Any disagreements in coding were resolved through discussion and review of the transcripts until consensus among the group was obtained. Open coding included a line-by-line analysis during which we created initial codes and grouped similar codes into categories (Speziale et al., 2011; Strauss, 1987). Once categories were identified, axial coding was used to identify common categories across participants, dimensions within categories, and conditions that affected how categories interacted with each other (Strauss, 1987). Finally, we used selective coding to identify the core category and construct the conceptual model (Speziale et al., 2011; Strauss & Corbin, 1998; Strauss, 1987). In addition, constant comparative analysis was used to understand interactions among categories and variation in participants’ experiences (Strauss & Corbin, 1998).

Rigor

Multiple strategies were used to maintain rigor in data collection and analysis. Member checking was used throughout to determine whether the conceptual model accurately described participants’ experiences (Charmaz, 2014; Kools, McCarthy, Durham, & Robrecht, 1996). A qualitative research team (D. Liebzeit, L. Bratzke, and B. King) analyzed the data to reduce individual bias and improve credibility of the results (Charmaz, 2014; Strauss, 1987). Quotes from multiple participants were used to support the data analysis and ensure findings were grounded in the experiences of participants (Charmaz, 2014; Strauss, 1987). Additionally, we kept detailed methodological and theoretical memos to create an audit trail of all procedures, including data analysis and sampling decisions, and to improve credibility and reproducibility of results (Charmaz, 2014; Montgomery & Bailey, 2007; Strauss, 1987).

Results

All participants described the process of transition as moving from a state of normal function to loss and then working back to that normal state or having to redefine a new normal (Figure 1). Normal function was described as being able to contribute to and engage in all aspects (social, productive, and physical) of their life. All participants described starting out being normal until they experienced a major health event. Major health events (often involving hospitalization) were identified as either a major acute illness (e.g., myocardial infarction) or a new or worsening chronic illness (e.g., COPD and renal failure) that moved participants through the transition process. Losing normal involved experiencing a lower level of function both inside and outside the home, which resulted in new restrictions on participants’ engagement in and contributions to family, community, or work life. Working back to normal was accomplished by two different pathways: working to regain or working to maintain. Those working to regain focused on getting back to the level they were at prior to the major health event. In contrast, working to maintain often involved redefining to a new normal, which meant acceptance of a new normal state. Consequences of the two pathways were quite different. Although those working to regain described getting closer to being normal, those working to maintain described negative consequences, including being cautious, high healthcare utilization, financial burden, and relocation. Table 2 contains additional quotes to support the results.

Figure 1.

Conceptual Model Illustrating Process of how Older Adults Transition after a Health Event

Table 2.

Additional Quotes to Support Results

Dimension	Quote
Category: Being Normal
Enjoying	To be able to do things you love to do, uh, I go like uh a lot of antique stores and garage sales, stuff like that, looking for things, and uh that’s the kind of stuff I love to do. (interview 3)
Contributing	I worked in the wood shop for 12 years. I was supervisor there. And, I have always been the guy to go to. (interview 2)
Being Free	It means freedom, I mean, if I am going to go do something […] I wouldn’t have to stop and think about it. I don’t have to think about how much exertion it’s going to take, how much work is it going to take. (interview 2)
Being Independent	I can get in and out. Do my own shower and get dressed and undressed. And It’s great. (interview 11)
Category: Losing Normal
Being Restricted	I couldn’t do things, I couldn’t pull myself up or I couldn’t do things in the kitchen. (interview 11)
Physiologic Loss	Right now, I’m really concentrating on my [dialysis] training […] I want to get that out of the way. […] Once I get that out of the way, I can concentrate on something different. (interview 13)
Adjusting	I was on a narcotic for pain medication, driving me to occupational therapy or wherever we wanted to go, doctors’ appointment […] [My daughters] were my wheels until I got off of the oxycodone. (interview 4)
Category: Working to Regain
Pushing Self	I started getting up and walking around a little bit. I would go get a drink and come back and sit down […] Do the exercises that she told me to do. Eventually […] I got back on my feet. (interview 3)
Monitoring Improvement	My goal is to try to be a little more active, […] walk up and down the street without feeling winded. (interview 13)
Preventing Further Events	I just want to make sure that that infection is completely gone because I do not want in another three weeks to have the same flare up and start from square one again. (interview 4)
Category: Working to Maintain
Redefining	[Related to working] I miss not making the trim. I miss not hanging doors or doing trim work, because I really enjoy that […] that phase of my life is coming to an end. (interview 4)
	It means sitting in this chair […] 24 hours a day. Unless this [walker] is over here where I can stand and get it, hold of it and stand up. And that’s not often. (interview 1)
Preventing Further Events	When PT came in there, I could only walk a few steps before I got out of breath and we all realized that, you know, I wasn’t the best then at that point, so […] we just dropped [walking exercises]. (interview 11)
Category: New Normal
Accepting	I know I can’t get back [to being normal], I can’t do that, not to what I used to do. (interview 14)
Managing Loss	This is too big for us to handle anymore […] [My son] would love for us to be closer to him because he would really want to do stuff for us. (interview 14)
Consequences
Being Cautious	They had told my daughter, they said that one day y’all gonna get up and go in there and she might be dead. (interview 7)
High Healthcare Utilization	And that’s every trip [I go to intensive care]. I went to the hospital a few days […] and then by five days later I’m right back in the hospital. (interview 7)
Financial Burden	I can’t afford it. I’ve had a partial, that cost me 2,200 dollars, that’s a home equity loan took care of that. I’m still paying for that, you know. That’s frustrating to me, because I can’t, I just can’t hardly keep up with the bills. (interview 14)
Relocation	This is a senior apartment building. But I think that all of the people are older than me here […] I’m only here because of my illness, you know, as far as my age, that doesn’t, doesn’t fit in. […] I don’t interact with them. […] I’m not really having a social life. (interview 11)
	This time when I left [the nursing home after rehab], I had a feeling that if I can’t do it this time, I won’t be able to do it at all. […] if I don’t, I won’t be able to stay [home]. (interview 5)

Being Normal

All participants described being normal, which consisted of four dimensions: enjoying, contributing, being free, and being independent. Being normal meant participants were able to experience the four dimensions both inside and outside of their home. In this way, being normal inside the home was often connected to family living and being normal outside the home was connected to their community.

Enjoying was being able to participate in activities, either on an individual or group level, that the participants loved. Individual level was described as pursuing one’s own interests and finding ways to be creative, stimulating one’s mind, and learning new things to attain a sense of self-fulfillment. In contrast, group-level activities provided feelings of connectedness and social stimulation. Many participants described doing activities inside the home in order to bring their family together, whereas activities outside the home were to engage with friends and new acquaintances, to find others to share interests with, or to build friendships and connections in the community.

“[My husband and I] would dance […] Thursday night. Friday, Friday morning till Friday night. We sometimes would dance that long. […] Yeah, just enjoyed every minute of it. Met a lot of people from all over the country and had a good time.” (interview 1)

Contributing was described by participants as a means to achieve a purpose in life and feel productive. Contributing inside the home was described as supporting a family and a household. Some supported family by providing or managing family finances. Others helped with childcare, nurturing their children and grandchildren, or maintained the physical appearance of the home. Helping with children was seen as a sense of responsibility to stimulate children’s learning and develop into productive members of a community. Maintaining physical appearance of the home served as a sense of pride and represented quality of life for the family.

“It’s just the role [to maintain the household] that I’ve always had, and the role I want to continue. […] it just makes me happier about keeping my house in shape.” (interview 12)

Similarly, contributing outside the home provided participants with a sense of purpose and productivity to a larger community. It involved being an active member in their community by volunteering or continuing to be in the workforce. Participants focused on fulfilling needs in the community by providing service organizations or building knowledge and skills of others to fulfill jobs or work.

Being free was being able to move oneself in place and time without the assistance of another person. Being free was always linked to mobility, from the most basic level (e.g., walking around the home) to a more advanced level (e.g., driving a car). Mobility in the home meant being able to engage with family and visitors, whereas mobility outside the home meant a connection to the outside world, such as running errands, exploring new places, or seeking entertainment. Being free was also linked to having control over one’s time. Control over time meant they did not have to wait on someone to get them to a location, such as an appointment or grocery shopping. They were also not held back by heath conditions or lack of mobility that either required more planning or waiting to go where they wished.

“It’s just the way of life, you know, to get out and be free. You know, to go out and do anything you want and travel when you want.” (interview 3)

Being independent differed from being free and was described as the ability to care for one’s self and not be a burden to others. Being independent meant participants were able to fulfill their own basic needs, such as bathing/showering, toileting, dressing, or preparing meals, and to be self-sufficient. All participants described not wanting to be a burden to family members or friends, meaning they would not interrupt someone else’s day by asking for help. Being a burden contrasted with how participants saw contributing within the family, where they shared in responsibilities.

“I don’t want to be a burden [my son] or on my friends. I just need to be able to do for myself whenever I can.” (interview 5)

Being normal was described by all participants as a past state they had had prior to their major health event.

Major Health Event

Major health events were precipitating factors that started the transition from being normal to loss of normal. Major events were identified as a significant acute illness (e.g., myocardial infarction) or worsening of a preexisting chronic illness (e.g., COPD).

“That’s when […] everything changed, and I ended up doing nothing for a month because of the accident [burn].” (interview 4)

Health events often caused restrictions in a range of participants’ normal functions, from not being able to work to needing assistance with bathing, dressing, and movement. For some participants, needing and receiving assistance during their hospital stay was not viewed as being a burden: it was a luxury when they could let others care for them. In contrast, needing and receiving assistance after hospitalization was viewed as a constant reminder that participants were not able to be normal.

Losing Normal

All participants described losing normal as a temporary phase lasting from a few days to months after the major health event. Three dimensions of losing normal include being restricted, physiologic loss, and adjusting.

Being restricted was the experience of a physical contracting of space and engagement following a major health event. Contracting physical space meant participants experienced a loss of being able to engage in activities inside and/or outside home. Some participants could no longer get out of their home to contribute in their job and provide an income for their household. Others experienced increased physical limitations (e.g., lack of physical strength or energy) that kept them confined to the home or to nearby outdoor areas such as their yard or neighborhood. A few described being restricted to an even smaller space, ranging from a few rooms within the home or to a chair or couch. Increased restriction meant even more loss of contribution and engagement and greater burden on others for care needs.

“Four or five great, great-grandchildren. And I’d babysit a short time for all of them, but I can’t do anything now, even the youngest. Can’t lift the one year old, I can’t do anything, but sitting in the chair and talking. And they don’t want to talk.” (interview 1)

Physiologic loss was described as changes in body systems that impacted participants’ ability to be active or prevent further loss of normal. Many dealt with new susceptibilities, such as infection, injury, and illness or needing to adjust to a new diet or wear oxygen. Dealing with new susceptibilities and body demands resulted in focusing on short-term physiologic needs to maintain health and avoid acute events.

Adjusting was framed within a specific time period based on participants’ new restrictions and physiologic loss. Participants adjusted by temporarily accepting more help and waiting to heal. Help came from multiple sources (e.g., family members, friends, neighbors, healthcare providers, and new assistive devices), and ranged from having others temporarily take over tasks (e.g., managing family finances) to accepting help to fulfill basic needs (e.g., transportation). For many, adjusting required waiting. Waiting was necessary to allow the body time to heal so participants could start to work back to their prior normal state. Many knew they were ready to work when their body felt strong and they were able to start expanding their physical space:

“I decided I was ready to get back to normal. I could do some of these things for myself.” (interview 5)

Working to Regain

Participants who described reaching a point of readiness shifted their focus to working to regain. Working to regain often involved targeted efforts to increase physical strength and energy. The three dimensions of working to regain were pushing self, monitoring improvement, and preventing further events.

Pushing self was described as pushing themselves to accomplish more. Participants measured accomplishments spatially and temporally: focusing effort on walking further each day, increasing movement within the home or within the community, or staying at work for longer hours. Participants also pushed themselves to reclaim self-care and resume activities that they had temporarily stopped during the losing normal phase. In some cases, participants endured discomfort to push themselves to do an activity they used to do, fearing if they did not they would have permanent loss.

“The nurse said [name] do you want a chair? […] I said no ma’am, I’m going to walk. Yah, my back be hurting. It’s cuz I ain’t been doing that.” (interview 7)

Monitoring improvement was often described as tracking benchmarks (strength and energy). An increase in physical strength meant being able to get up alone, walk upstairs, or no longer need an assistive walking device. An increase in energy meant being able to be active for longer periods of time. Some participants described measuring distances in how they thought about expanding spatial movement.

“It was after about three or four weeks I could walk upstairs and get to my bed […] Then, I could start seeing the progress I was making.” (interview 3)

Preventing further events was an attempt to avoid further experiences of losing normal. Participants reported that during the working to regain phase, they were more susceptible to experiencing additional loss of normal. Any event, such as a short hospitalization or minor complication had the potential to send them back into the losing normal phase, undoing all the work they had accomplished.

“Oh, that was devastating because I was doing quite well, and I realize then, you know, it certainly weakened my knee, tripping, and so I had to kind of start from the beginning again.” (interview 12)

As a result, participants used several strategies to prevent further events. Some increased their awareness of others’ actions and movements (e.g., double-checking while driving in order to stay safe and prevent accidents). Others increased their effort in managing new diets or activity regimens related to their health conditions to prevent an interruption in their progress. Participants with chronic health conditions increased promptness in seeking care to prevent a cascade of additional events. Additionally, they made sure to have a thorough follow-up to prevent exacerbations of their health status, which would have interrupted their work to regain.

For many participants, the working to regain phase lasted several months to years. Some described the importance of monitoring for slight improvements over long periods of time, whereas others described regaining most of their normal function over a shorter period of time.

“I’ve been progressing, […] so I’m pretty much back to normal.” (interview 9)

For participants who were unable to overcome the restrictions and physiological loss experienced in the losing normal phase, the experience shifted toward finding longer-term adjustments to the new limitations. These efforts focused less on regaining loss function and more on maintaining current capabilities.

Working to Maintain

Participants who were in the working to maintain phase described their health as compromised often due to loss of substantial physical strength and ongoing physiological loss. These individuals shifted to short-term, rather than long-term, mindsets.

“You start living day to day, you don’t live month to month.” (interview 6)

Living life day-by-day was due to increased challenges participants had to face to cope with loss of their normal state. Participants described two dimensions of working to maintain: redefining and preventing further events.

Redefining meant acknowledging new restrictions on their ability to move and being able to contribute. For some participants, redefined contributions shifted from working outside the home and providing finances for the family to focusing more on helping inside the home (e.g., through child care or housework). Others redefined their contributions inside the home by passing on more physically demanding work to spouses, children, friends, or neighbors. Many described their work as a part of their identity, often struggling when they had to pass on those contributions to others.

“[My wife] works for extra money […] I was the man, you know. […] I’ve learned to have a whole different picture.” (interview 2)

A few participants became limited to movement to only a few rooms in their home. These participants often described redefining by normalizing feelings of isolation and boredom, as they saw little or no opportunity to engage in the activities they had once enjoyed. Participants who experienced more severe contracting of space often struggled with ways of redefining their sense of independence. For many, this meant continuing to complete as many personal cares on their own as possible. Some were able to redefine how they could gain independence from others (e.g., by relying on new assistive devices or by moving to a single-story house).

Preventing further events meant different things to participants in the working to maintain phase than it did to those in the working to regain phase. The primary means of preventing further events was to cautiously restrict physical movement. Restricting movement was done to prevent accidents, such as falls, that would precipitate further loss in normal. Strategies used to prevent accidents were slowing or decreasing their mobility and space of movement.

Participants in the working to maintain phase did not overcome their restrictions and physiologic loss. Therefore, they remained highly susceptible to new events (injuries, illnesses, and minor hospitalizations) that caused them to move back to losing normal and more loss of function.

“This has all been taken away from me so gradually, one ankle and then the other ankle. […] It’s just gradually, suddenly something’s gone. I was used to it, and then all of the sudden it’s gone.” (interview 1)

New Normal

When participants could not get back to their pre-health event normal, they had to redefine what their new normal would be. To do so, patients described their experiences through two dimensions: accepting and managing loss.

Accepting meant participants moved forward and were positive about what they could still do or accomplish. For example, some described still being independent because they could continue to live on their own. Others were content because they were simply alive.

“As far as being bummed about it, you know, I’m more like happy that I can do this […] hey I’m glad, I’m alive.” (interview 11)

Similarly, managing loss meant accepting help from others or using new strategies to cope with feelings of loss of control. Others helped participants maintain freedom to move about by driving them around town or helping them walk. Some participants needed to rely completely on family to provide home maintenance and household chores, so they could remain in their home. Not having others to help resulted in participants needing to relocate to be closer to family members, move to a smaller house, or move into an assisted living facility.

Participants also had to cope with loss of control over various aspects of their life, such as their personal appearance or the physical appearance of their home. Ultimately, participants had to lower expectations for their day-to-day life and engagement with others.

“You’re just missing everything that is going on […] They’re all going by one way or the other and they don’t need you […] they’re going on without you.” (interview 1)

Participants who entered into a new normal remained susceptible to subsequent losses. Those who experienced subsequent major health events described going through additional transitions from losing normal to working either to regain their prior new normal or to maintain an even lower level of function. With each event, participants in this phase had to continually redefine what normal was.

Consequences

Participants described consequences of transitioning from loss to working back to normal differently depending on whether they were working to regain or working to maintain. Participants consistently did not describe negative consequences in the working to regain phase. Rather, they used strategies (as described in working to regain section) to prevent further events that could result in consequences.

Participants in the working to maintain pathway described negative consequences compared to those working to regain. Negative consequences consisted of always being cautious, high healthcare utilization and financial burden, and relocation.

Participants described being cautious by restricting movement to prevent an injury or avoid exacerbation of a chronic condition. These participants were on continual alert to potential threats and lived in fear of experiencing even worse outcomes in the future, such as being confined to a wheelchair or dying.

Participants described high healthcare utilization as requiring frequent hospitalizations and repeat visits to their physician’s office. In particular, repeated hospitalizations represented additional financial burden. Some participants had to pick which treatments or medications they should pursue because they feared being unable to pay for the care they needed.

Participants described experiences with relocation as a result of ongoing restrictions with movement and inability to care for their homes or themselves. Some participants had to move out of their homes to live closer to their children in order avoid moving to a nursing home; for many, this relocation meant giving up who they once were and leaving behind friends and communities. Others described moving to senior-living complexes earlier than they would have wished, marking a further decline in health and social life. Those already in senior living feared being moved to a nursing home. Moving to a nursing home was described as a last resort, and nursing-home placement frequently meant completely losing connection to the outside world. Consequently, participants frequently struggled with who they were as individuals, because they no longer fit into the physical and social spaces as they once had.

Discussion

This study revealed a transition process distinct from previous research addressing transitions in older adults after hospitalization. With health events, including major acute and chronic illnesses, older adults described a complex transition from a state of normal function to loss and then working back to a normal state or having to redefine a new normal. This transition process was longer than described in the literature, often spanning months to years and including multiple illness events and hospitalizations that extended beyond the scope of previous research on transitions among care settings (Coleman & Boult, 2003; Coleman et al., 2006; Kind et al., 2012; King et al., 2013; Naylor et al., 2014; Naylor et al., 2011; Naylor et al., 2017). The views represented by older adults of transitions as an iterative and complex process, combined with evidence that the sequelae of transitions are often consequential and protracted (Cadogan, Phillips, & Ziminski, 2016; Gilmore-Bykovskyi, Roberts, King, Kennelty, & Kind, 2017; Kiely et al., 2009), warrant a reexamination of how clinicians, policymakers, and researchers define transitions.

Furthermore, our findings reveal that a sense of normal function at home was central to older adults’ description of a transition process. Their description of function extended beyond what has been previously captured by common measures of ADLs (Liebzeit, King, & Bratzke, 2018; Liebzeit, King, Bratzke, & Boltz, 2018). In this study, function was multidimensional, comprising one’s ability to contribute to and engage in all aspects (social, productive, and physical) of life. Our participants’ description of normal function involved engagement both inside and outside the home, and loss of function involved a contracting of both space and contributions/engagements. ADLs are designed to capture most fundamental activities of daily living, such as bathing, dressing, and eating (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963; Mahoney & Barthel, 1965), which in this study were described as being independent. Our findings indicate ADLs were the last dimension of normal function older adults would lose, often after they had already lost much of their ability to contribute, enjoy, and be free. This supports the notion that when assessment is limited to ADLs, clinicians and researchers are detecting only the latter stages of functional decline (Liebzeit et al., 2018). When older adults lose the ability to complete ADLs, they have likely already experienced more significant consequences of loss of function, such as contraction of space of movement and engagement/contributions. Moreover, the idiosyncratic experiences of transition our participants described corroborate previous research that suggests function is often an enactment of unique roles, routines, and relationships (Boltz et al., 2010) and includes concepts of effectiveness (contributing) and connectedness (enjoyment) (Leidy & Haase, 1999). These results underscore the need to further examine function as a multidimensional concept in transitioning older adults and to further consider ways to improve assessment in research and practice.

Finally, our study emphasizes the limited reach that traditional medical management of transitions can have. Our findings document a more-complex “life” transition for older adults with health events and hospitalization that extends beyond the limited scope of past research into medical management between care settings (Coleman & Boult, 2003; Coleman et al., 2006; Kind et al., 2012; King et al., 2013; Naylor et al., 2014; Naylor et al., 2011; Naylor et al., 2017). Gaps remain in our ability to help older adults manage their transition back to life at home (Greysen et al., 2014; Grimmer et al., 2004; Walker et al., 2015), and limitations to our understanding of the complexity of the transition process hinder our ability to address ongoing functional loss (and the corresponding financial and personal costs) in transitioning older adults (Buurman et al., 2011; Huang et al., 2013; Wu et al., 2006; Zisberg et al., 2015). Our study suggests broadening the concept of transitions for older adults in future research and program design.

Study Limitations and Recommendations for Further Research

This study has several limitations. First, participants’ description of their experiences of health events and early stages of the process, for example, being normal and losing normal, were based on retrospective report. Although participants in the current study were able to vividly describe their transition and articulate the significance of transitioning events, descriptions of transition experiences may be enriched in future studies if older adults are sampled and interviewed at multiple time points along the transition process. Second, we recruited hospitalized older adults transitioning back home after a medical inpatient stay, so it is unclear how these findings would translate to older adults who have not experienced hospitalization or who have experienced transition directly to other healthcare institutions, such as long-term care in a nursing home. Our study provides a foundation for future research addressing transitions in older adults.

Implications

The findings of this study have important implications for research and practice. This study provides a detailed understanding of how older adults define and experience a transition and the complexity of that transition. Furthermore, our findings provide empirical support for incorporating measures that are patient-centered and meaningful to patients and family caregivers (“Meaningful Measures Framework,” 2018). Finally, this study illuminates the opportunity for reconsideration of how best to support older adults transitioning after hospitalization and illness and further examination of function as a multidimensional concept in future research and program design.

Funding

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health [Award Number F31NR017104]; the 2017 Eckburg Fund Research Award from the School of Nursing, University of Wisconsin – Madison; and an OAA Advanced Fellowship in Geriatrics (William S. Middleton Memorial Veterans Hospital, Madison, WI). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the U.S. Department of Veterans Affairs or the United States Government.

Conflict of Interest

We have no conflict of interest to declare.