A qualitative study of health‐care experiences and challenges faced by ageing homebound adults

Abstract Background The ageing of the global population is associated with an increasing prevalence of chronic diseases and functional impairments, resulting in a greater proportion of homebound individuals. Objective To examine the health‐care experiences of older homebound adults who have not previously received home‐based primary care (HBPC). To explore their impressions of this method of care. Design Cross‐sectional qualitative study using semi‐structured interviews. Setting and Participants 18 older homebound individuals in Central Virginia. Results Our findings revealed that homebound individuals faced significant health challenges, including pain resulting from various comorbidities. They felt that their mobility was restricted by their physical conditions and transportation challenges. These were major barriers to social outings and health‐care access. Participants left their homes infrequently and typically with assistance. Regarding office‐based care, participants were concerned about long wait times and making timely appointments. Some thought that HBPC would be convenient and could result in better quality care; however, others believed that the structure of the health‐care system and its focus on efficiency would not permit routine HBPC. Discussion and Conclusions Older homebound adults in this study faced high burdens of disease, a lack of mobility and difficulty accessing quality health care. Our observations may help researchers and clinicians better understand the health‐care experiences and personal opinions of older homebound individuals, informing the development of effective and empathetic home‐based care. Participant responses illuminated a need for education about HBPC. We must improve health‐care delivery and develop comprehensive, patient‐centered HBPC to meet the needs of homebound individuals.


| INTRODUC TI ON
The proportion of older individuals in the United States is rapidly growing. The US Census projects that by 2050, more than 20% of the total US population will consist of older adults, compared with 13% in 2010. 1 This ageing of the population is associated with an increasing prevalence of chronic illnesses and functional impairments, resulting in a greater proportion of homebound individuals, in relation to the US population as a whole. 2 In 2011, 5.6% of people aged 65 and older (approximately 2 million people) were considered homebound. 3 Homebound status is defined as never or rarely leaving the home in the last month, while semi-homebound status is defined as needing assistance or having difficulty leaving the home. 3 Homebound and semi-homebound adults experience a range of illnesses that prevent them from easily leaving their homes and accessing hospitals, office-based medical care, and social interactions. 2 They experience metabolic, cardiovascular, cerebrovascular, and musculoskeletal diseases, as well as cognitive impairment and depression, at higher rates than the rest of the older population. 2,4 Loneliness, social isolation, and decreased life satisfaction associated with homebound status can also have adverse impacts on both mental and physical health conditions. 5,6 The health-care needs faced by homebound older adults are associated with high costs to the US health-care system. 3,4,7 Homebound individuals' difficulty accessing traditional office-based primary care is associated with an increased number of emergency department visits and hospitalizations. 8,9 Homebound patients are estimated to account for around half of the costliest 5% of patients, due to their comorbidities, functional impairment, frailty, and social stressors. [10][11][12] The top 5% of health-care spenders were thought to be responsible for approximately 60% of all health-care costs in 2011. 11 The top 10% most costly beneficiaries of Medicare spending, which likely encompasses the majority of older homebound patients, incur Medicare payments 6.5 times the fee-for-service (FFS) average. 10,13,14 These costs can be mitigated through home-based primary care (HBPC), which provides comprehensive, interdisciplinary, and longitudinal care at home for individuals with chronic, complex conditions. 7,9,[15][16][17][18] It is important to distinguish HBPC from Medicare home health-care services, although both are often referred to as home-based medical care, as Medicare home health care tends to be temporary or intermittent. 7,9,15,17,18 HBPC produces high patient satisfaction rates, lower hospitalization durations, lower readmissions, decreased emergency department visits, and lower Medicare costs with similar survival outcomes. 3,7,9,[16][17][18][19][20][21][22] There is currently a shortage of HBPC providers compared to the number of individuals in need. 7,9,16 There is a lack of qualitative research designed to investigate the health-care experiences and needs of homebound people and their perceptions of HBPC, specifically in the United States. 19,23 The objective of our study was to integrate patient narratives into this field, through interviews examining ageing homebound individuals' perceptions of their interactions with the health-care system. We intended to understand how becoming homebound affects an individual's ability to access health care. We were primarily interested in examining the opinions and attitudes of homebound adults (who were not receiving HBPC) on the concept of HBPC, and learning whether they would be open to this system of medical care. An advantage of our study was that it involved a relatively high proportion of rural and African American participants, as these populations tend to be underrepresented in health-related research. 24

| Data collection and analysis
During summer 2018, the primary author contacted health-care providers and organizations in the Charlottesville community involved in homebound patient care, which advertised the study and distributed information about the study to potential participants. Interested older adults who received this information then contacted the researchers, who described the study and asked whether the individuals were willing to participate. Homebound status was verified over the phone, seeing as the eligibility criteria for the programmes from which participants were recruited were diverse and not limited to only homebound individuals. Willing participants reviewed and signed an IRB-approved consent form and Health Insurance Portability and Accountability Act (HIPAA) authorization form.
A total of 18 interviews lasting an average of 50 minutes (range 26 to 96 minutes) were conducted at the homes of participants. A qualitative descriptive design was adopted, which used semi-structured, guided interviews to create a detailed, in-depth summary of the intricacies of homebound life. 27,28 Participants were asked about their social demographics, and personal perspectives regarding their health-care challenges and physical, mental, and social situation. Using this method, topical questions posed to participants led to descriptive answers about their lived experiences, while still giving participants the flexibility to provide information not necessarily probed for by the study team.
This approach was most appropriate, as it provided a summary of the complexities of homebound life from nuanced perspectives, leading to a greater understanding of the individual needs and specific dynamics among these particular ageing homebound participants. 29 Interviews were audio-recorded and transcribed verbatim. To ensure participants' privacy, pseudonyms were assigned to individual participants, identifying information was removed, and files were stored on secured devices. Descriptive statistics were used to describe characteristics of the participants. The interview data were analysed using a thematic analysis approach via NVivo 12 software (QSR International) for qualitative coding. An a priori topical coding scheme was developed based on the interview guide and grounded in patient work system theory. 30,31 This model represents the self-care performed by homebound participants as health-related work, the processes of which affect health status but are also impacted by an individual's attributes, performed tasks, physical environment and social environment. 30,31 This model provided guidance for developing an initial coding structure around the unique characteristics of homebound health care. 30,31 Open coding was then used to capture emerging concepts. 32 Inductive and deductive coding schemes were refined using an iterative process of constant comparison, based on an increasing understanding of the study data. 33 New themes were identified and created until data saturation was reached and no new coding categories emerged; participant recruitment was then closed. To establish inter-coder reliability (ie a consistent, unbiased application of thematic coding), two researchers independently coded a portion of transcribed interviews. They cross-examined their individual coding-coding schemes were compared at both the beginning and conclusion of data analysis. If there were any inconsistencies or differing interpretations of the coding outcomes, a third member of the research team was available to review the codes and assure internal validity of the coding schematics. After these iterations, the final coding scheme was then applied to the interview data. The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

| Demographic information
A majority of the 18 participants were female and the participants' ages ranged from 52 to 91 years, with the average age being 68.7 years ( Table 1). The sample was almost evenly split between Caucasian and African American participants. Most participants lived in Charlottesville and most lived alone. The highest education levels of the participants varied, ranging from some grade school to a college degree. These demographics are somewhat reflective of an epidemiologic study of the US homebound population by Ornstein et al using data from the National Health and Aging Trends Study, in that homebound individuals tended to be older, female, and non-Caucasian, and have less education. 3

| Thematic results
Three major thematic clusters relevant to participants' health-care experiences as homebound individuals emerged during the interviews: (1) health conditions, (2) mobility limitations and (3) healthcare experiences. While other interesting themes did emerge, such as social isolation and spirituality, these three categories were articulated by the majority of the respondents and given the greatest emphasis in this analysis, due to our research focus on participant interactions with the health-care system. In the description of the thematic results below, refer to Tables 2-4.

| Health conditions
The homebound individuals interviewed experienced various health problems. Common physiological illnesses encompassed arthritis, diabetes, stroke, bone fractures, cardiovascular disease, heart failure, high cholesterol and urinary tract infection. Pain was mentioned by 12 participants and 16 participants considered themselves physically disabled in some manner (quotes 1-5). Psychological conditions included depression, anxiety, schizophrenia, attention deficit disorder and post-traumatic stress disorder. Depression was a prevalent influence on homebound individuals' mental health; 10 participants mentioned feeling depressed, although not all of them have been clinically diagnosed (quotes [6][7][8]. For a majority of the older adults interviewed, the development of homebound status was due to a physical impairment resulting from medical conditions such as arthritis, bone fractures and stroke. Almost all participants experienced at least two major medical conditions.

| Mobility limitations
A majority of participants were only able to leave their home 1-3 times per week, typically only for grocery shopping or to attend a doctor's appointment (quotes 9-12). Mobility restrictions were due to physical disabilities, lack of transportation and financial constraints. Most participants were either driven by family or friends or used public transportation services, such as a regional bus service for ADA-certified riders providing curb-to-curb or door-to-door transport, depending on location, by appointment (quotes 20-21).
Public transportation posed challenges for study participants who

| Health-care experiences
Participants were asked a series of questions pertaining to their    our study; participants frequently reported that they appreciated physical therapy and felt that it improved their functional abilities.

| D ISCUSS I ON
Participants also favoured health-care providers who listened to the patient's concerns and opinions, and collaborated with the patient to formulate a treatment plan. 23 Homebound individuals wanted to be more mobile and independent, and felt restricted by their physical conditions and transportation challenges. 23,34 Compared to participants who lived in Charlottesville, rural participants experienced a higher travel burden. 40,41 In emergency situations, study participants were often forced to call an ambulance for assistance, which involved a high, Among the most prevalent concerns regarding office-based care were difficulty with making timely appointments and long wait times. Participants highly valued health-care providers who listened closely to patients and displayed genuine care and concern.
Coordinated HBPC where patients' goals and preferences are clear, patients are provided community resources, and collaboration exists between health-care providers, social workers and medical equipment agencies has the potential to circumvent office-based care issues. [15][16][17][18]26,34,44 However, study participants held diverse opinions about home-based primary care. Some participants believed that HBPC would be convenient because individuals are more comfortable in their own homes and they could avoid the time, expenses and physical difficulty of getting to office-based primary care. 15,26,44 HBPC also has the potential to lead to better patient-provider un-

| CON CLUS ION
The key thematic categories of health conditions, mobility limitations and health-care experiences characterized by this study pro- sharing information about our study with potential participants.

CO N FLI C T O F I NTE R E S T
The authors declare that there is no conflict of interest.

AUTH O R CO NTR I B UTI O N S
Yao and Cheng conceived and designed the study. Cheng acquired the data and drafted the manuscript. All authors analysed and interpreted the data and critically revised the manuscript.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.