Patients with COVID‐19 share their experiences of recovering at home following hospital care transitions and discharge preparation

Abstract Introduction Patients discharged following hospitalization for COVID‐19 require clear discharge protocols, information resources and communications to adequately prepare them to safely and successfully transition from hospital to home. Our study focuses on the patients' transition to recovering at home including their hospital discharge preparation and hospital experiences. Methods A qualitative descriptive study design involved interviewing patients who had been hospitalized for COVID‐19 in one urban Alberta, Canada centre. Purposive sampling was used to select patients from a centralized COVID‐19 hospital patient database stratified by month between March 2020 and February 2021. Other inclusion criteria (e.g., sex and age) were also considered. Semi‐structured interviews with patients were recorded, transcribed and analysed using thematic analysis. Data sufficiency and saturation were determined. Results Twelve patients shared their lived experiences and recovery journey from COVID‐19. Themes were reported under three main areas as framed by the study aim—the current status of patients recovering at home, including the supports they used to manage; their discharge process and preparation to go home; and their various hospital‐related experiences. Suggestions for improving aspects of the patient journey were also captured. Conclusion Findings provided details of the needs, information gaps and what matters most to patients when they are recovering from COVID‐19 at home, including their preparation to safely and successfully transition from hospital to home (i.e., feeling well prepared to go home, including being adequately assessed and having clear discharge protocols and communication). Key learnings were applied to improve or develop patient discharge and transition resources. Patient or Public Contribution A patient/family advisor and patient experience partners were involved throughout the study, codeveloping all aspects, from the study design to the reporting and application of the findings. Leading into the study, patient experiences and feedback regarding the home from hospital recovery journey informed multiple aspects, including the codevelopment of the interview guide.

transportation home, having contacts for further support or advice as needed, or what health advice or further treatments to follow-up while recovering at home. 10,11 Having clear discharge protocols and communication with patients and their families/caregivers was viewed as critical, 12 particularly if there needed to be regular monitoring of patients to assess their clinical outcomes or the need for medical or rehabilitation care, [12][13][14][15] oxygen support or virtual or other types of care. [16][17][18] The intent of such monitoring during recovery was to address patient needs and reduce readmission to the hospital. 19,20 For some patients, there was increased clinical deterioration after being discharged, and a high chance of being readmitted to the hospital within 60 days. 21,22 Very few studies followed COVID-19 patients through their experience journey, starting with where they were at with recovering at home and reflecting back on their experiences with their hospital discharge and care. This reversed approach to the conversation was intentional to demonstrate to patients our empathy regarding their recovery from COVID-19. The approach also provided patients some time to establish trust and become comfortable talking about their recovery, and remembering their experiences, some very emotional, as they reflected back on their hospital discharge and entire care journey. We wanted to explore specific experiences that influenced their recovery, including gaps in information and person-centred care to address their needs at the time of discharge or while hospitalized.
The aim of our study was to understand these lived experiences of patients with COVID-19 as they continue their recovery at home following their transition from the hospital. Through these experiences, we intended to inform improvement initiatives related to various patient supports, information, resources and practices, which would more appropriately guide and prepare patients for their discharge from the hospital, and their recovery at home, including follow-up care and/or self-management.

| Study setting
The study setting was Alberta Health Services (AHS), the largest provincial health system in Canada. More specifically, our study was focused on the Calgary Zone, one of five zones within AHS that had designated COVID-19 treatment hospitals throughout the pandemic. Table 1

| Study design/methods
A qualitative descriptive design 23

| Participants
As per qualitative studies involving the gathering of lived experiences of individuals regarding a specific situation or circumstance, it was difficult to predict or pre-determine how many patients would need GANTON ET AL. | 2863 to be interviewed regarding their lived experiences recovering from COVID-19 following their hospitalization and discharge home. We used purposeful sampling 24 of English-speaking patients hospitalized and discharged from Calgary hospitals between 8 March 2020 and 1 February 2021. Although our main intent was to have participants selected for each of the months in our targeted timeframe, our selection of participants was also guided, but not stratified by other inclusion criteria as shown in Table 2 (e.g., sex, age, where a person lives). We initially anticipated completing 11 interviews, but the final number of interviews was determined by data saturation through the iterative thematic analysis of transcribed data described under Section 2.5.
Patients selected and called by qualified surveyors were invited to participate in the interview study. A structured script was used to guide the call. As patients agreed to talk about their experiences being hospitalized with COVID-19 and transitioning home to recover, a schedule of selected interview times was provided to them, so they could choose what day and time would work best for them to be interviewed. Study and consent information was also emailed to each of the latter patients. A guide for frequently asked questions was also prepared for the telephone surveyors should they be asked questions about privacy, the interview process and the focus of questions.

| Interview process
All interviews were conducted using a secure AHS-licensed Zoom video platform. Each patient who agreed to an interview was contacted by the qualified interviewer (K. K. B.) to review the study information, consent letter and process, including instructions for the interview. However, it was also a concern that participants may feel that the interviewer while taking notes was distracted or inattentive to patients as they shared their personal stories. 25 Therefore, having another person as a note taker allowed the interviewer to give undivided attention to patients while at the same time, all key points and observations were being captured. These key points and observations when compared with the recordings and the transcripts would provide better consistency for the qualitative data analysis, as conducted by both the interviewer and note taker. 26

| Data analysis
The interviews were all transcribed. Thematic analysis was conducted with each transcript, 27 with inter-rater reliability checks in place. One analyst used NVivo for coding and theming, 28 while the second person (K. K. B.) manually coded and themed. Inter-rater checks were conducted to ensure consistency in codes and evolving themes between the two individuals and approaches applied. Any discrepancies were discussed and addressed by the two raters. Data sufficiency 24 as well as saturation were determined through two main factors-base number of interviews with consideration of the inclusion criteria, and run-length of new information analysed to be between 0% and <3%, compared with the majority of other common repeated codes, themes and related information. 29 Analysed transcript codes and themes were also triangulated with the note-taker and observation notes, to confirm the accuracy of codes and themes captured and data saturation. 29,30 2.6 | Ethics approval As per protocol for studies classified as quality improvement and based within AHS, the interview process and guide were taken through an expedited ethics review using the ARECCI (A pRoject Ethics Community Consensus Initiative) screening process. The study including the process and interview guide was approved.

| RESULTS
Data saturation was achieved with the 12 completed and thematically analysed interview transcripts. The findings are presented by themes to reflect common experiences among some or most of the 12 patients, with some unique single-patient experiences. The manner of presentation reflects the aim of the study focusing on patients' experiences during their recovery from COVID-19 starting with their current state of well-being and recovery at home and reflecting on their hospital experiences and their readiness or preparation to be discharged and transition from hospital to home. • What, if any lingering or new issues are you experiencing at this time (e.g., being short of breath climbing upstairs or doing usual activities; pain; fatigue; mental fog; difficulty walking without help or a device like a cane/walker)? 2. What, if any, assistance or supports are you using to help you manage your household tasks or other activities, such as returning to work, exercising, childcare, going for groceries, etc.?

| Profile of patients
• Any physical assistance/supports including physical therapy or devices to assist you including any mobility supports…?. • Any other supports to help you emotionally, mentally?
• How did you find these supports? Who was/is involved? • Probe about role/involvement of family/caregiver in assisting person.
• How well do you feel that your needs are being met or managed?
• What assistance/supports do you feel you are missing or would find helpful? Do you need assistance accessing support/services you need? 3. What, if any, assistance or support are you using to manage your self-care activities, such as washing/bathing, dressing, meal preparation; emotional self-care/meditation etc.?
• Physically, emotionally, psychologically • How did you find these supports for self-care? Who was/is involved?
• Probe about role/involvement of family/caregiver in assisting person.
• How well do you feel that your self-care needs are being met or managed?
• What assistance/supports do you feel you are missing or would find helpful? Do you need assistance accessing support/services you need? 4. What contact and follow-up care have you had with your family doctor or other healthcare providers since arriving home from the hospital?
• Explore what that was like for the patient-if they were contacted, when did that occur and did they appreciate having their family doctor f/u; if they were not contacted…. How did it make you feel? • Did your family doctor know that you had COVID-19 and were hospitalized? • Did your family doctor reach out to you, or did you call your doctor?
• Was a follow-up appointment with your family doctor prearranged for you before you left the hospital? If so, how did this make you feel? • If you have not had any follow-up, what information are you missing? How do you feel about this?
Discharge from hospital 5. Thinking back to the day you left the hospital to go home-How prepared did you feel to go home from the hospital (i.e., physically, mentally, emotionally and psychologically)? 6. What specific information, help or resources do you remember getting that helped you feel ready, or prepared you for going home? How helpful were these for you? Physically, most individuals (n = 10) identified some level of 'fatigue' ('…the fatigue, that comes and goes, there is no rhyme or reason for it. One second I'm feeling fine then next minute I have to sit down'-P12). Half of the patients also noted that their experience with COVID-19 made them realize that it was time to make some changes in their lives and practices, which included 'slowing down' (P12), prioritizing things differently (i.e., pre-COVID-19 issues were no longer concerns) and changing the eating habits. Most individuals claimed that they 'feel lucky, grateful' (P2) to be alive.
Regarding the need for extra supports, most (10 of 12) individuals indicated that they were not really in need of extra external services or supports, but also knew of or had access to some support. These individuals had family at home to assist or had friends or other supports (e.g., Home Care services) already arranged to assist them.
For example, those with family members at home had meals prepared, shopping done or delivered and other household tasks attended to.
One person was a caregiver to a spouse and had to manage both of

| Reflecting back on the patients' discharge from hospital-Their readiness and preparation
Patients' experiences with their discharge and preparation to go home following hospitalization were summarized under five themes-'Discharge Process', 'Preparation/Feeling Prepared to go Home', 'Information/Resources/Supports' and 'Improvement Suggestions' (see Table 6 for the themes, codes and key points).  Four individuals said they were well prepared to be discharged to go home. The others were told and understood that they had to meet specific criteria to be granted a discharge, including walking/mobility, breathing checks and medications working as intended. Most felt that staff were knowledgeable about these latter aspects and trusted them. However, three individuals felt they were discharged too early (i.e., felt unwell, exhausted and struggled to breathe). These three experienced relapses and were readmitted within 24 h after their discharge, two due to low oxygen saturation and another because of anxiety/panic attacks affecting heart rate and breathing.
Patients had different experiences when it came to medications or oxygen they needed for their recovery at home. For example, one individual had a prescription faxed to a pharmacy and had to find a way to pick this up. Another person was provided enough medication to take with him and use while at home. One other person had to make an unscheduled trip back to the hospital to sign documents regarding arrangements for the oxygen to be retrieved from his home after it was used up. This latter patient indicated that the staff person checked and told him he was able to leave, but unfortunately, that was not the case: …nurses that came to tell me, 'you know you're done, you're free to go … discharge papers have been filed'. Feeling back to normal Degree/extent of feeling/being back to a pre-COVID normal state-varied across individuals; when they had COVID over the past year did not factor into their recovery state; some felt back to pre-COVID 'normal' state; recovery related to COVID infection (minor vs. severe), side effects (younger patients) and possibly age; some have medical conditions as well.

Physical impact
Most identified some level of fatigue (10-generally feeling tired but some feel exhausted; associated with other physical issues-shortness of breath; loss of taste/smell; headaches, muscle/back pain, brain fog/memory loss and not being able to sleep. All trying to get back into normal activities as much as possible. Some greater impacts-difficulty exercising; exacerbated asthma; hair loss, heart and other conditions; some need more one-on-one supports or medical care/treatment.

Mental, psychological and emotional impact
Most indicated being fine/okay-general frustration with COVID. Some had family/friends impacted-deaths identified.
Personal issues/concerns-depression, anxiety, sleep difficulties and PTSD resurgence in one person.

Spirituality Identified by a few individuals-prayers
Personal life changes Realization of need to make changes-slowing down, prioritizing things differently, changes in eating habits, lower tolerance for foolishness. Most grateful to be alive.

Supports needed
Most are not in need of external services or supports-most have family or friends to assist/support. Different arrangements-those living alone have friends or home care supports, meals on wheels, etc.; one person self-manages and accesses helplines/clinics.

Follow-up/contacts Contact with family or other doctors
• Follow-up varied-many had calls from family doctors/specialists, some having one call, others many calls; one person did not have a family doctor. • Some had specific referrals or follow-up tests.Follow-up calls from Alberta Health Services (AHS)few individuals received calls from AHS as a follow-up; family members connected with AHS for advice or what to watch for.

Suggestions
Standing protocols for follow-up with patients released from the hospital • Either AHS or a family doctor is scheduled to call patients.
• Check on the status and needs of patients.

| Patients' hospital experiences-Care influencing recovery
Patients' experiences with their in-hospital care and supports were captured under four themes-'Intensive Care', 'COVID-19 and General Care', 'In-hospital Supports' and 'Improvement Suggestions'.
Also relevant to patients' in-hospital experience, two additional T A B L E 6 Themes and codes with brief descriptors

Discharge from hospital Themes Codes and descriptors
Discharge process Notice to patients regarding discharge-day of or day before. Process-confusing for some; criteria for discharge; waiting for sign-off; contacting family. Transportation arrangements-family; one needing taxi/other. Emotional experience for some.
Preparation/feeling prepared to go home from the hospital Varied preparation for discharge and going home. Mixed feelings of staff knowledge regarding discharge-most okay; some feared early release and relapse (three readmitted). Different/individual medications/oxygen arrangements.

Information, supports and resources
Inconsistencies in information patients received, how and when-related to hospital and staff; what was available to give patients. Eight patients received discharge information/packages-some opened them, and found the information useful. Other considerations-varied staff experiences but overall good job.

Other information or supports needed
Those with discharge information did not need anything else. Some wanted better pre and during discharge information and related discussion/explanation for postdischarge follow-up. Those not getting any information did not know what they missed.

Suggestions for making discharge or transition home smoother
Better verbal communication by staff before/during discharge recondition, contact information and follow-up directions. Retest patients to ensure they test negative before going home. Staff have the same consistent messages during redischarge/follow-up. Postdischarge protocol needed for checks on patients by doctors and/or AHS.
Note: Patient experience with their discharge from hospital and preparation to go home.
Abbreviation: AHS, Alberta Health Services. themes were captured-'Prehospital Care' and 'Emergency Department (ED) Care' (see Table 7 for the themes, codes and related experience points captured).

Many patients shared their prehospital experience including
calling AHS Help Line for information and either being driven or taken by ambulance to the ED at one of several hospitals. In the ED, each individual's experience was different, but most indicated that this was the worst part of their hospital experience overall. They commented on the ED being a super busy place, lots of noise, 'lack of true privacy' (P5), feeling isolated ('very lonely experience without family or anyone for support'-P7), and 'long waits to talk with doctors' (P8) as well as getting assessments, tests/test results, and other information before being admitted or discharged. All patients indicated the need to have someone (e.g., HealthCare Aid) check on every patient every so often to determine status, help with needs or just to ask 'How are you doing?' (P6).
Those who went to the intensive care unit felt well taken care of.
Family members were allowed to come in. Staff were very responsive to patient and/or family call bells and needs-information was provided, questions answered and encouragement given to patients to get up when they were feeling better and walk around their room.
Half of the patients interviewed viewed their experiences on the general COVID-19 units as generally good-'I'm not a big fan of hospitals…it was such a great experience… I mean I still remember the one nurse, … he like went through a whole pile of pillows to find me the most comfiest pillow' (P1). Everyone commented on how bad it was not having family allowed due to visitation restrictions, although they understood the reasons for the policy. Also because of the

T A B L E 7 Themes and codes with brief descriptors
In-hospital experience

Themes
Codes and descriptors Prehospital experience Contact with AHS-advice re: symptoms was usually go to hospital; some patients given misleading information-passed off for flu. Prehospital-Positive for most patients accessing/using EMS. Questionable advice sometimes given to patients.

Emergency department experience
Different experiences for each person-worst part of most patients' hospital experience (not related to staff but to processes and long waits); some patients feared their medical conditions would be overlooked. All indicated need to have someone check on patients regularly.
Intensive care experience Those in ICU felt well taken care of-good interaction; family allowed in; staff responsive to patients; options for treatments provided and explained; information given; questions answered.
COVID general care Patients viewed experiences as good-most felt they got good care; staff competent, knowledgeable and well trained. Most patients did not see doctors but nurses were personable, helpful and addressed needs. Preference for private rooms. PPE protocols made patients feel safe.
Poor/negative experience No major complaints but some negative experiences. Isolation-no family allowed; feeling isolated even with staff around; no TV or access to iPads for some-had to have family/friends drop off iPads. Food-mixed views Not having a private room-sharing generally and one with person of opposite sex. Nurses refusing to don PPE to bring in water, Tylenol, food, blankets-left items by the door for patient to retrieve; call bells not answered when needed.
In-hospital supports Minimal/no supports-because of COVID, most supports like therapies, etc. were not available/accessible. iPads limited in number-patients needed to have someone deliver their iPads, etc. Some rooms had TV, most did not. Personal care items provided to patients, as needed. The discharge from hospital preparation protocols and processes, 12 including information provided, how, when and by whom, seemed to be key in establishing patient and/or family/caregiver or other capacities for managing recovery at home. [12][13][14][15] Yet, for many patients, this was a less than positive and rather confusing experience. 9 Much of this confusion could be attributed to the inconsistencies in discharge assessments and notifications, information for arranging transportation or follow-up care, as well as inconsistencies in the way these various aspects of discharge were communicated to patients and/or their significant others, 10 patients were not always well prepared with the right information to go home; were discharged quickly as cases and hospitalizations rose rapidly; did not feel confident to manage safely at home; did not have clear paths for who to contact regarding concerns or increased symptoms and sometimes needed to return to the ED or be readmitted. 20 See Figure 1 for a summary of the work leading up to, as well as including and following the COVID-19 patient experiences interviews.
Much of the in-hospital COVID-19 care was viewed by patients as being what it was because of the pandemic and the protocol restrictions in place, but they generally had positive things to say about their experiences, 7 including those who had to stay in Intensive Care. 8 The resulting restrictions prevented family visitation 9 or the provision of therapies and supports, both of which patients relied on for mental health and physical well-being. Adding to the isolation was the fact that staff also did not spend much time talking with or checking on patients. Patients suggested that staff do more periodic checks on patients to monitor their status and check on their needs.
Patients should not have to feel guilty asking for items they needed as part of their care, or having staff 'garb up' to see them.
Although more extensive qualitative studies like this one are needed to capture the recovery at home journeys of patients with COVID-19, including their hospital discharge and transition preparation, the findings from this study have provided some insights supported by and contributing to the literature. Although the perceived limitation of this study, as inherent with many qualitative studies, includes the number of interviews conducted, we were able to demonstrate data sufficiency 24 and data saturation through our iterative thematic analysis of transcripts. 29,30 Other noted limitations included that only English-speaking patients hospitalized between March 2020 and February 2021 were targeted, with some additional consideration for sex, age and/or where the persons lived. Also, patients called could decline or accept the invitation; many patients declined and therefore, patients accepting the invitation were considered to be self-selected.

| CONCLUSION
Findings from this study not only informed us of the recovery journey of patients with COVID-19 while at home but also provided a rich understanding of the needs, information gaps and what matters most F I G U R E 1 Progression of work related to patient transitions resources: before, during and following COVID-19 patient interviews.
to patients when they are preparing to safely and successfully transition from hospital to home to recover. Key learnings from the study were applied to improve the COVID-19: My Discharge