Experiences and Reported Outcomes of Patients and Caregivers Enrolled in an Integrated Care Program for Thoracic Surgery: A Qualitative Evaluation

Research methodology

We undertook a qualitative process evaluation to assess whether the IC Program is being implemented and delivered as intended and the mechanisms by which the Program may impact different outcomes [20]. This approach is well positioned to enhance our understanding of patient and caregiver experiences and to inform program improvements. An evaluation matrix was used to inform data collection and analysis. An evaluation matrix is a planning tool that connects each evaluation question to the sources of data for answering that question [21]. A qualitative phenomenological approach [22] was used in this study since this approach centres the participants subjective lived experiences and seeks to explore the meanings of those experiences. This study is embedded within a larger mixed-methods evaluation; further details about the IC program and health care provider experiences are described elsewhere [23].

Positionality and reflexivity

The evaluation team included graduate students, researchers, and health care administrators, with roles, preconceptions, and viewpoints that may have impacted the data analysis and conclusions. Evaluation team members are trained in qualitative data analysis using reflexive note taking as one means to track positionality. To further enhance the reflexivity and reliability of our approach, we held regular working group meetings with broader Program stakeholders (e.g., program staff, directors, and patient representatives) to discuss and solicit feedback on emerging themes.

Program description

In June 2019, the University Health Network, a large University-affiliated hospital in Ontario, Canada, implemented an IC Program in the thoracic surgery department. The program was modelled after an Integrated Comprehensive Care program at St. Joseph’s Healthcare in Hamilton, Ontario and was subsequently modified through collaboration with patients and stakeholders across care sectors [19]. The program has four defining features: 1) an IC lead who is a registered nurse and central coordinator in the care model that helps patients navigate their care journey from the hospital to the community; 2) a 24/7 phone line available to patients and caregivers to answer questions; 3) one shared digital record; and 4) an integrated funding package containing bundled services and payment. Depending on individual circumstances and the type of surgical procedure, patients are enrolled into low, medium, or high IC care paths. Each care path is distinguished by the levels of support needed and resources offered, with greater supports available to patients in the high path, compared to the low path. Services provided in the IC Program include support in the community setting with check-in calls from the IC lead, and depending on the care path, patients may also receive additional pre-rehabilitation services, including home care visits from a nurse, dietician, physiotherapist and/or personal support worker (see Table 1).

Development of interview guide

Two separate interview guides were developed for patients and caregivers, with questions and probes used to capture information on indicators identified in the evaluation matrix which was informed by the evaluation working group and the World Health Organization’s Framework on Integrated People-Centred Health Services [24] (S1 Table). Interview questions were leveraged from existing standardized tools [25262728293031]; however, question wording was adapted where necessary to allow for open-ended responses.

Participant recruitment and interviews

Two IC leads from the hospital’s thoracic surgery department facilitated the recruitment of a sample of patients and caregivers. To include a diverse study sample that reflected a broad range of experiences, maximum variation sampling was used, which also ensured that our sample included both patients and caregivers from different IC paths (i.e., low, medium, and high) [32]. Patients and caregivers who finished their care path and were discharged between June 30, 2019, and April 30, 2020, were eligible. The final sample size was 10 patients (4 low path, 4 medium path, 2 high path) and 8 caregivers (3 low path, 3 medium path, and 2 high path). The sample included 4 (22.2%) males and 14 (77.8%) females. Two experienced researchers from the external evaluation team completed the interviews by telephone between April 9, 2020, and June 5, 2020. All participants received a gift card, valued at $20 Canadian dollars. Median patient interview length was 26 (IQR:19–35) minutes and median caregiver interview length was 39 (IQR:37–44) minutes.

Qualitative analysis

All interviews were audio-recorded and transcribed verbatim. Information from patient and caregiver interviewers were qualitatively analyzed using a data reduction, data display, and conclusion drawing approach [33]. The first step in the data reduction process involved selecting, focusing, and abstracting relevant pieces of information from the transcripts into more manageable groups of similar information. This was achieved through the process of thematic analysis, which was used to identify, categorize, and describe themes. First, we used a deductive approach to explore the transcripts for themes related to indicators defined in the evaluation matrix, in combination with an inductive approach to identify themes that emerged from the data. A coding manual [34] was developed to abstract and synthesize the data using a preliminary list of codes constructed to reflect the indicators in the evaluation matrix (S2 Table). Two authors, independently coded one patient and one caregiver transcript and met to review intercoder agreement and refine the coding guide. Further rounds of double coding were completed until there was very strong agreement to proceed with independent coding of the remaining transcripts [35].

The second step involved the creation of a data display which is a table that displays the data in an organized and compressed manner, promoting relationships and patterns within the data. Finally, conclusion drawing involved an overall assessment of the analysed data to identify what learnings can be drawn from it. As the data display and conclusion drawing progressed, preliminary findings were brought to the evaluation working group to solicit feedback. NVivo 12 Software was used to facilitate qualitative data analysis. This study is reported in line with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [3637].

Patient Involvement

This evaluation was undertaken with input from an evaluation working group comprised of patient representatives, researchers and practitioners. The evaluation team met with the working group throughout the evaluation process to finalize the evaluation questions, advise on the methods and indicators, as well as guide the interpretation of findings and formulation of recommendations for the IC Program.

Ethics approval

This evaluation was deemed a quality improvement project as described in the Tri-Council

Policy Statement V.2; therefore, the project received a waiver from the University Health Network (UHN) and University of Toronto Research Ethics Boards.

Theme 1: Coordination and timeliness of patient care facilitated by an integrated care lead

Most patients and caregivers in our sample felt they received well-coordinated and timely care. Coordination of care was facilitated by having the IC leads function as the link between the community and hospital. Patients and caregivers expressed that they felt they could call the IC lead and receive a timely response to their questions. For example, one patient recalled contacting the IC lead because they were having reoccurring episodes of nausea and vomiting. The IC lead promptly arranged for the patient to return to the hospital the following day, where a minor surgery was needed to address the issue.

In our interviews with patients and caregivers, we observed evidence that the IC leads played a vital role in supporting several aspects of care coordination, including assessing changes in patient health status, responding to concerns from patients and caregivers, and coordinating follow-up care. For example, a patient recalled contacting the IC lead about a blockage in a tube and the IC lead arranged for a nurse to arrive at their home a few hours later to correct the problem. In some cases, patients said they called the IC lead to communicate new symptoms that may be a cause for concern. For example, one patient concerned about their incision sent pictures of it to the IC lead, and a follow-up appointment was arranged with their surgeon:

Several patients and caregivers noted that the check-in calls from the IC lead were helpful because they allowed them to voice concerns and receive timely follow-up care. The 24/7 support line was typically utilized by patients, although a few caregivers also accessed this resource and reinforced reflections from patients about effective and proactive coordination of care. For example, one caregiver contacted the IC lead after noticing a prescription was missing once the patient was discharged, and said the IC lead immediately arranged for the prescription to be sent to the pharmacy:

Theme 2: The provision of person-centred care and relational continuity fostered feelings of partnership with patients and caregivers

Most patients and caregivers reported sufficient levels of support and information to manage their care post-discharge. However, a patient who was introduced to the Program post-surgery said they did not have enough information in advance to prepare for their discharge, particularly in regard to their dietary needs: “I think [pre-op] is when [program staff] should have given me the timeline about foods, how long I had to be X number of weeks doing straight liquids, X number of weeks doing moist food and ideas of what I could eat or consume. I would have been better prepared. So, when I came home, we were scrambling, and I was in no shape to be scrambling.” (Patient, medium care path). Overall, the majority of caregivers said they felt involved as much as they wanted to be in decisions about the patients care. Patients also generally agreed that their caregivers and families were appropriately involved in decisions about their care and felt that their preferences were respected. Some patients and caregivers shared examples of how doctors and other hospital staff listened and were attentive to the patients’ preferences. For example, a patient shared how the clinical team listened and worked with them to address pain management: “Sometimes the pain was just unbelievable, and I would talk to the doctors and say, ‘Can we try this? Can we do this?’ And they were all very receptive. And I would say, ‘This stuff is making me nauseated; it’s not working well’. And they would say, ‘well let’s try this and let us know how it works out’. I was included [in decisions] and what I had to say was important to them.” (Patient, high care path). One caregiver shared that they felt that the IC Program partnered with them in caring for the patient:

Patients and caregivers were followed by the IC leads throughout their entire care trajectory, from pre-hospitalization to post-discharge. This relational continuity helped to build and foster rapport with patients and caregivers. By proactively addressing concerns in real-time, a few patients recounted that the IC lead may have helped to avoid an unnecessary trip to the ED: “If I had some kind of a problem, I would call the [IC lead] to help me with my issue and avoid making a trip to the ED, you know” (Patient, medium care path). In most situations, the IC lead was able to re-assure the patient that their symptoms did not necessitate a visit to the ED. In some cases, the IC leads were able to move up an appointment with their surgeon to accommodate changes in the patient’s health status. Caregivers expressed immense gratitude for the IC lead, who was a bridge between the hospital and community setting. The importance of rapidly arranging for the patient to return to the hospital that completed the thoracic surgery, ensured that providers were up to date about the patient’s health and treatment plan:

Theme 3: Clear communication and one shared digital record increased informational continuity

During their hospital stay, patients and caregivers said they experienced good communications about their care between doctors, nurses, and other hospital staff. Patients and caregivers generally felt that doctors and other staff answered their questions, provided enough information, and explained things in a way they could understand. For example, one caregiver reflected: “You know, we had no problems with any of the nurses. If you asked them a question, they always answered, not yes or no, it was always kind of detailed. They would explain everything to you and why this is happening and so [the communication] was good.” (Caregiver, high care path). Patients and caregivers appreciated having their questions answered by the IC lead when they were discharged from the hospital, and frequently expressed appreciation in the staff’s knowledge of their medical history so that they did not have to re-explain things to different providers:

When asked about their experiences with communication, most patients felt that health care providers worked as a team:

Patients and caregivers generally felt that health care providers within the hospital were informed and up to date about their care, and many felt this was facilitated by having a shared electronic patient record. For example, a caregiver said that their surgeon was able to access the patients medical record with another physician in the hospital to review a concern they brought up about medication dosage. Another patient elaborated on the electronic patient portal containing their medical records:

Theme 4: Impacts of integrated care on patient and caregiver outcomes

Most patients in our sample felt supported and confident in their ability to self-manage their health. Patients frequently reflected on the utility of the IC leads in increasing patient confidence to self-manage their health, particularly during the post-discharge period. Patients reported feelings of “comfort”, “support”, “security”, and “reassurance” when reflecting on the availability and timeliness of the IC lead’s responses to their questions. Even if patients did not contact the IC lead, which was more common among low path patients, they noted it was comforting to have this resource available:

In addition to the IC lead, patients in the high care path commented on the importance of having a dietician and home care team, stating that their support was influential in their ability to self-manage their health and accelerate their physical recovery post-surgery:

While most caregivers felt prepared for their role to support the patient during the post-discharge period, a few expressed that they felt the program was primarily for the patient and suggested it would have been helpful to know that these resources were also available to them to utilize and to empower them as caregivers:

About half of the caregivers in our sample felt they successfully navigated their role and that caring for the patient was not too burdensome or stressful. Some caregivers mentioned that they had previous caregiving experience and that they were familiar with hospital processes and advocating for the patient, which they felt built resiliency and contributed positively to their emotional wellbeing. About half of caregivers felt that their mental and physical health was impacted by caring for the patient. One caregiver stated that their health was negatively impacted because they changed their own eating habits to coincide with the patient’s new diet and were frequently worried about the patient’s health. Two other caregivers commented on the stresses of watching a loved one go through treatment and that caring for the patient may have impacted their own mental health:

The general sense among caregivers was that they had to manage or ‘deal with’ the situation the best they could. There was reluctance to ask for support and some felt their physical or emotional needs were less important than the patient’s needs: “There was no support or anything for me. I just dealt with it. I never mentioned myself.” (Caregiver, high care path). Multiple caregivers indicated that they felt the IC Program was more patient-focused and they were unaware of resources available to support caregiver wellbeing.