Exploring transitions in care from pulmonary rehabilitation to home for persons with chronic obstructive pulmonary disease: A descriptive qualitative study

Abstract Background Individuals with chronic obstructive pulmonary disease (COPD) often experience high health‐care utilization following pulmonary rehabilitation, suggesting suboptimal transitions to home. Objective To understand the experiences of persons with COPD and health‐care professionals regarding transitions from pulmonary rehabilitation to home, including factors impacting these transitions. Design A descriptive qualitative study. Setting and participants Health‐care professionals working at, and persons with COPD who attended, an inpatient or outpatient pulmonary rehabilitation programme at one large, urban health‐care centre. The centre is located in Ontario, Canada. Main variable studied Experiences of participants with care transitions between pulmonary rehabilitation and home. Semi‐structured interviews were audio‐recorded, transcribed verbatim, and thematically analysed. Results Ten patients and eight health‐care professionals participated. Four main themes were identified around the overall experiences with pulmonary rehabilitation and transitions to home: (a) pulmonary rehabilitation as a safe environment; (b) pulmonary rehabilitation as a highly structured environment; (c) contrasting perceptions of the role of pulmonary rehabilitation; and (d) dependency on pulmonary rehabilitation programmes. Persons with COPD and health‐care professionals identified three key factors that influenced this transition: (a) patients' social support, (b) application of self‐management strategies prior to discharge, and (c) patients' physical and mental health. Conclusion Participants agreed that some patients with COPD experienced suboptimal transitions from pulmonary rehabilitation to home that were characterized by suboptimal self‐management. Further research is needed to develop and evaluate interventions to improve transitions. Such interventions should include strategies to elicit long‐term behaviour change to assist patients when they return into the community.


| INTRODUC TI ON
Chronic obstructive pulmonary disease (COPD) is a progressive, life-threatening disease that is associated with many comorbidities, high health-care utilization, and high mortality rates. [1][2][3][4] Moderateto-severe COPD has been estimated to affect nearly 65 million individuals worldwide. 5 Because of their high health-care utilization, persons with COPD often experience transitions in care as they move from one setting to another. 1 While the goal of transitions in care is to maintain continuity of disease management regardless of the patient's location, 6,7 persons with COPD often experience suboptimal transitions. 8,9 This can lead to emergency department visits and hospital readmissions. 6,7 Within the first year following hospitalization, 18% of patients with COPD in Canada are readmitted once, while 14% are readmitted at least twice. 10 For individuals with COPD who experience reduced activity tolerance due to dyspnoea, pulmonary rehabilitation is the recommended therapy. 11,12 Pulmonary rehabilitation is a comprehensive collection of patient-tailored therapies that intend to provide patients with COPD the education and skills to self-manage their disease at home. 12 However, due to the structured design of these programmes, being discharged from pulmonary rehabilitation signifies another point of transition for persons with COPD. In an attempt to improve the transition from pulmonary rehabilitation to home, on-going communication and continuity with health-care professionals are commonly identified needs. 6,7,13,14 Another key factor in facilitating optimal transitions in care is self-management. 15,16 Self-management education teaches skills required for disease-specific treatments, assists with behaviour change and promotes emotional support. 15 Self-management programmes have been demonstrated to improve outcomes, including decreased hospitalization admissions, among persons with COPD. 17,18 Unfortunately, the current literature suggests that patients with COPD often have difficulties applying self-management strategies, 19,20 even after following pulmonary rehabilitation, 13,21 with minimal research on why. A 2017 qualitative study reported that health-care providers in England identified several factors that affected self-management for persons with COPD. 19 These factors were complex and interrelated, including provider (knowledge, communication skills, interprofessional teams, ability to normalize self-management into routine practice), patient (knowledge, motivation, emotional/psychological state, self-management skills), and system-level (service fragmentation, inconsistent pathways) factors. 19 Prior research has focused largely on compliance to home exercise programmes post-discharge from rehabilitation, [21][22][23] or to transitions from acute care to the community. 8,9 To our knowledge, no studies have sought perspectives from health-care professionals and persons with COPD during transition from rehabilitation to home. To address this gap, the purpose of this study was to explore the experiences transitioning from pulmonary rehabilitation to home from the perspectives of persons with COPD and health-care professionals with a focus on identifying factors which affect this transition.

| Study design
A qualitative descriptive methodology was used to explore the experiences of transitions in care from pulmonary rehabilitation to home from the perspectives of persons with COPD and health-care professionals.

| Setting and participants
The pulmonary rehabilitation programme in this study is provided through a health-care centre in Ontario, Canada. The programme includes a combination of exercise, self-management education, and psycho-social support provided by an interprofessional team (eg, respirologists, nurses, and physiotherapists). The programme can be provided both as inpatient and outpatient rehabilitation. Inpatients remain at the health-care centre, receiving 22.5 hours of therapy of self-management strategies prior to discharge, and (c) patients' physical and mental health.
Conclusion: Participants agreed that some patients with COPD experienced suboptimal transitions from pulmonary rehabilitation to home that were characterized by suboptimal self-management. Further research is needed to develop and evaluate interventions to improve transitions. Such interventions should include strategies to elicit long-term behaviour change to assist patients when they return into the community.

K E Y W O R D S
chronic obstructive, health personnel, pulmonary disease, rehabilitation, self-management, social support, transitional care and education per week. Outpatients attend twice weekly, receiving 6 hours of therapy and education per week. Following pulmonary rehabilitation, patients have the option to participate in a maintenance programme at the health-care centre that involves 1 hour of supervised exercise once a week. Patients can remain in the maintenance programme for 6 months or longer depending on availability of space.
The participants in this study were individuals with COPD who completed pulmonary rehabilitation and health-care professionals working at the rehabilitation health-care centre. Participants with COPD were eligible if they (a) were diagnosed with moderate or severe COPD according to the Global Initiative for Chronic Obstructive Lung Disease guidelines, 1 (b) had been discharged from inpatient or outpatient pulmonary rehabilitation within the past 1-6 months, and (c) understood English. Health-care professionals were required to (a) have a minimum of 1 year of experience working in pulmonary rehabilitation at the health-care centre and (b) understand English.
No exclusion criteria were applied.
A purposive sampling technique 24 was used from a convenience sample of patients and health-care professionals from the study health-care centre. We sought both patients who attended the inpatient and outpatient programmes to compare and contrast experiences with transitions. We also sought diversity in healthcare professionals from different professions as their roles may influence their perceptions of transitioning patients to home. A staff member on site approached patients and health-care professionals for consent to contact, and once received, the researchers contacted the potential participants for consent to participate.

| Data collection
Two researchers completed semi-structured interviews with patients and health-care professionals. Interviews were audio-recorded and conducted either in-person or by telephone. Two interview guides (one for persons with COPD and one for health-care professionals) with open-ended questions and probes were used (see Tables 1 and 2).
Questions were developed with considerations of the key domains from the Ideal Transitions of Care Framework 16 to capture important aspects of an ideal transition (eg, communication, advice, and discharge planning). During the interview, participants were also asked to complete a short socio-demographic (eg, age and sex) and/or clinical questionnaire (eg, professional role and years of experience).
Interviews ranged from 30 to 60 minutes. Following each interview, researchers recorded reflexive notes highlighting key concepts.
Clinical data from the patient's medical records (eg, pulmonary function) and data from a socio-demographic and clinical questionnaire were also collected.

| Data analysis
The data were analysed using an iterative process that began during data collection. 25 Interviews continued until data saturation was reached (ie, no new concepts were identified in subsequent interviews). 26,27 Data analysis was guided by the Qualitative Analysis Guide of Leuven model, following an iterative and constant comparison approach. 25 The model is divided into two stages: preparation for coding and actual coding. 25 In the first stage of analysis, the audio file of each interview was transcribed verbatim and was reviewed to ensure accuracy and de-identification of the data. The first four transcripts were read by eight research team members to develop a preliminary coding framework. In the second stage of analysis, the preliminary framework was applied to subsequent transcripts and codes were adjusted as needed. 25 The final framework was applied to four new transcripts by multiple coders.

TA B L E 1 Interview guide for patients
Interrater reliability was established by comparing application of the codebook during in-person meetings. Discrepancies were discussed and resolved by the team before the remaining transcripts were coded. All transcripts were coded using the software package NVivo 10 with the finalized framework. Codes were compared between inpatients, outpatients, and health-care professionals to identify main themes. This iterative approach to analysis facilitated an in-depth exploration of participants' experiences.
This study received ethics approval from the University of Toronto (#35485) and the Health-care Centre's Research Ethics Board (#17-014). Informed consent was received from all participants.

| RE SULTS
Ten patients with COPD and eight health-care professionals participated in this study. Demographic characteristics of participants are presented in Table 3. Participants discussed three key factors that influenced this transition: (a) social support at home, (b) application of self-management strategies prior to discharge, and (c) patients' physical and mental health.

| Pulmonary rehabilitation as a safe environment
Most patients and health-care professionals had a positive view of the pulmonary rehabilitation programme.

| Pulmonary rehabilitation as a highly structured environment
Many participants in both groups described pulmonary rehabilitation, especially the inpatient programme, as being highly structured.
Although some patients described their experience as feeling 'institutionalized' or 'quasi-militaristic', they explained that the con-

| Dependency on pulmonary rehabilitation programmes
Patients' perceptions of pulmonary rehabilitation as an intervention for all their health needs often led them to rely on the programmes. Many patients reported an increased confidence in their ability to manage acute illness following pulmonary rehabilitation; however, this confidence seemed to be partly rooted in the belief that the transition home was not permanent, and they would be readmitted to the programme as needed. Moreover, social support from peers with COPD was identified as an important facilitator of transitioning from pulmonary rehabilitation to home through 'camaraderie', 'understanding', 'moral support', and a 'push' to exercise. These benefits were reported more frequently by patients attending the maintenance programme.

| Application of self-management strategies prior to discharge
Most participants identified having the opportunity to apply the strategies they learned in pulmonary rehabilitation at home, be-

| Patients' physical and mental health
Most patients reported a decline in their health status leading up to their admission to pulmonary rehabilitation; however, many patients expressed an improved ability to manage everyday activities after the completion of their inpatient or outpatient programme. This was often attributed to 'increased lung function', 'better breathing', and an 'increased ability to conserve energy'.
Both patients and health-care professionals reported that acute exacerbations hindered patients' ability to maintain the benefits of pulmonary rehabilitation after being discharged.

The other big barrier is if they get sick right after they leave. They get a chest infection and exacerbation, they
can't exercise, they don't feel well and then it's hard for them to get started again.

(C01, Health-care Professional)
Patients also reported musculoskeletal comorbidities unrelated to COPD to be another significant barrier to completing activities and exercises at home.
I've got exercises to fix that shoulder I hope eventually.

But [my shoulder pain inhibits] doing the breathing exer-
cises which I should be doing every day.

(P05, Patient)
Health-care professionals acknowledged that musculoskeletal comorbidities complicated patients' transitions to home but expressed an inability to manage these conditions in pulmonary rehabilitation due to limited time and resources.
Many patients and health-care professionals agreed that COPD is often associated with mental health challenges. Anxiety about shortness of breath and fear of disease progression hindered the transition home. An effective pulmonary rehabilitation programme focuses on behaviour change to maintain its benefits, but this is challenging to implement in practice. 20,21 Most health-care professionals spoke of the need for a greater focus on problem-solving to better prepare patients for the unpredictable nature of everyday life at home. This idea is supported by Bourbeau and van der Palen who suggested that opportunities to practice and problem-solve are required to develop self-management skills, and it is inadequate to rely solely on patient education. 20 Patients often had the perception that they could return to pulmonary rehabilitation at any time if needed, which suggests patients viewed the programme as a 'safety net' rather than a way to learn effective self-management strategies.
The type of pulmonary rehabilitation-inpatient or outpatientalso influenced the opportunity to practice self-management skills.
The structured inpatient environment failed to take into account the unpredictable nature of life at home and seemed to create a susceptibility to programme dependency. Conversely, the outpatient programme has less imposed structure since patients do not stay at the centre, and these patients described a Social support, such as having a caregiver at home, was identified in our study as an important facilitator of transitions. The benefits of social support to facilitate transitions (eg, reduce anxiety and fear) and self-management are supported by previous studies. 13,19,29,30 DiNicola and colleagues examined social support and the impact on anxiety for patients with COPD. They found that patients surrounded by individuals with unsympathetic or insensitive behaviour had higher anxiety levels. 30 Patients in our study indicated that social support increased their motivation to complete their daily exercise and that caregivers provided reminders to pace themselves during their daily activities. Chen and colleagues reported that persons living with a caregiver at home were more likely to participate in outpatient pulmonary rehabilitation programmes and had higher physical activity levels. 29 Similarly, our study found that although adherence to home exercise programmes was relatively poor for our participants, those who reported exercising more frequently identified their family or caregivers as key motivators.
The opportunity to apply the skills from pulmonary rehabilitation was identified as a significant factor impacting transitions. Despite the fact that patients reported they understood the importance and benefits of exercise, they had difficulty continuing to exercise at home unless the exercises were incorporated into their daily routines. This was particularly true for inpatients as they were not living at home during pulmonary rehabilitation. Our findings are consistent with the literature, as daily exercise is infrequently achieved during the transition from pulmonary rehabilitation to home. 14,16,21 Our results suggest that exercise adherence may be improved by making the exercises more relevant to the patients, thereby making it more intrinsically motivating to implement in daily life. Intrinsic motivation has previously been noted as an important aspect of maintenance of behaviour change in this population. 22 Examples of relevant exercises in this study included activity modification, pacing, and managing shortness of breath.
Our study also identified that the physical and mental health status of patients (eg, arthritis, anxiety and depression) affected their overall care transitions and ability to self-management. Previous studies have also shown psychological issues (eg, frustration, guilt, anxiety, and depression), as well as other comorbid conditions, to be barriers for self-management. 19,31,32 Specifically, patient anxiety and breathlessness were identified in a systematic review as common factors affecting patients' ability to self-manage. 21 Similarly, patients and health-care professionals in this study identified anxiety related to shortness of breath as a common concern affecting patients' transitions.
Due to the progressive nature of COPD, exacerbations often impact an individual's ability to exercise and complete activities of daily living. [31][32][33] Our study supports this finding, as exacerbations resulted in a more difficult transition because patients were unsure how to resume exercising after further functional decline. A unique finding from this study was that patients believed that they would be readmitted to pulmonary rehabilitation if their functioning decreased following an exacerbation. This suggests that, although pulmonary rehabilitation is designed to provide individuals with the tools to self-manage during and after exacerbations, patients relied on the programme to solve more significant episodes of functional decline.

| LI M ITATI O N S
A limitation of this study is the selection of participants who were English-speaking-only. It is possible that individuals who speak other languages may have different experiences with transitions.
Additionally, of the ten persons with COPD, only one individual used supplemental oxygen; therefore, future research should aim to understand how oxygen needs influence transitions from rehabilitation to home.

| CON CLUS ION
The transition from pulmonary rehabilitation to home for patients with COPD can be a challenging experience. The perception of pulmonary rehabilitation, social support, changing health status, and the application of skills learned at pulmonary rehabilitation were identified as key factors that contribute to this experience. Understanding how these factors influence the transition will inform an individualized approach, preparing patients for life at home. This may include prescribing exercises that are more salient to patients, completing home visits to identify barriers prior to discharge, increasing autonomy in pulmonary rehabilitation, or implementing social support programmes in the community once patients have transitioned home.
Future research is warranted to develop and evaluate interventions and programmes to improve the transition from a structured intensive rehabilitation to the community, which will likely improve the self-management skills and quality of life for persons with COPD.

ACK N OWLED G EM ENTS
This research was completed in partial fulfilment of the requirements for an MScPT degree at the University of Toronto.

CO N FLI C T O F I NTE R E S T
The authors report no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Due to confidentiality and the nature of the consent obtained, the interview transcripts cannot be shared. For further information related to this data set, contact the senior author.