Study design

This mixed-methods cross-sectional study was initiated and led by two members of the Sepsis Canada and Action on Sepsis PACs and a UBC Assistant Professor. The UBC’s Action on Sepsis PAC was established in May 2020 and consisted of 5 patient partners from three provinces. The Action on Sepsis PAC supports a provincial sepsis research network where most members are UBC faculty. The Sepsis Canada PAC was established in January 2022 and consisted of 28 patient partners across 8 provinces, including individuals who are also members of the Action on Sepsis PAC. The Sepsis Canada PAC supports a national sepsis research network with members from 8 Canadian provinces and 11 additional countries. In this study, the terms patient partners and PAC members are used interchangeably. As PAC members, these patient partners participate in a range of activities including network operations (e.g., strategic planning, attending steering committee or PAC meetings), research (e.g., reviewing grant proposals or manuscripts, co-developing studies), and knowledge translation (e.g., presentations, public awareness campaigns, or developing patient education materials). PAC members were able to choose the extent of their engagement in each activity based on their interests, availability, and readiness. We referred to the Consensus-Based Checklist for Reporting of Survey Studies [19], Consolidated Criteria for Reporting Qualitative Research [20], and Guidance for Reporting Involvement of Patients and the Public (GRIPP2) [21] for reporting the study (S1–S3 Appendix).

Study team

The study team consisted of 5 patient partners (MMB, KR, KM, SK, JS), a UBC Assistant Professor with experience in qualitative methodology and patient-oriented research (MV), the Action on Sepsis Network Coordinator (SN; PhD-prepared UBC employee), a PhD candidate and health equity specialist with experience conducting sepsis-related research in Canada (FS; trainee with Sepsis Canada), and a research assistant with Action on Sepsis (MS; recent MPH graduate who received training in conducting qualitative interviews and applying a trauma-informed lens to understanding patient experiences by MV).

Participant recruitment

All current members of the Sepsis Canada or Action on Sepsis PACs were eligible to participate (n = 29). Members were either sepsis survivors or caregivers of sepsis survivors. Recruitment for the survey and interviews/focus group discussions were conducted separately, using targeted recruitment through the PACs membership email lists. Participants did not have to complete the survey to be eligible to participate in interviews. Study invitation emails contained a short description of the study, contact information, and a link to the survey or contact information for MS, who facilitated interviews and focus group discussions. These invitations were distributed by the Sepsis Canada or Action on Sepsis Network Coordinators after review and approval by the respective PAC Co-Chairs, who are sepsis survivors themselves. After two weeks, a second email reminding members about the study was also distributed.

Survey – Recruitment, data collection, and data analysis

We recruited participants for the survey from February 16 to March 21, 2024, until the target sample size was reached (n = 15). The sample size assumed a 50% response date among the 29 potential participants. The survey link remained active for one month after the recruitment period. After completing the survey, participants were automatically re-directed to a new Research Electronic Data Capture (REDCap) survey where they were invited to provide their name (optional) and email to receive a near cash equivalent (gift card) of $10 in recognition of their contribution. This enabled identifiers (name and email) to be stored separately from survey responses to ensure confidentiality of responses.

The survey was administered using REDCap and participants provided consent electronically. The survey (S4 Appendix) used the validated Patient Engagement in Research Scale (PEIRS) [21] based on relevance and appropriateness of the survey items to the study objectives. Prior to beginning data collection, additional questions on patient demographics and length and level of engagement with PACs were developed and iteratively revised following discussions among the study team. We pilot tested the survey for clarity and appropriateness with two PAC members. No significant changes were made to survey questions after pilot testing and responses from these two patient partners were included in the final analysis. No actions were taken to prevent multiple participation, as we determined this was unlikely given our targeted approach to recruitment.

Given the small sample size of the survey, the risk of re-identification is high and thus only aggregate data about patient demographics and engagement with PACs are reported. PEIRS scores were calculated following the published method [21]. Each item on the PEIRS was assigned a numeric value between 0 and 4 (strongly disagree to strongly agree, respectively). Scores for each domain were calculated as: ((sum of responses)/(total number of items responded to within that domain x 4) *100). If participants responded as ‘Not Applicable’, no numerical value was assigned to that item and the denominator was modified accordingly. In the validated PIERS (21), a total score below 70.1 is considered a ‘deficient’ degree of meaningful engagement; between 70.1 and 82.7 is a ‘moderate’ degree; between 82.7 and 92.0 is ‘very high’ degree; and above 92.0 is an ‘extremely high’ agree. The semi-structured interview guide (S5 Appendix) was developed to further explore items where participants reported ‘deficient’ degree of meaningful engagement and items where there was high discordance across individual responses (i.e., participants’ responses ranged from ’moderate’ to ‘extremely high’).

Interviews and focus groups – Recruitment, data collection, and data analysis

We recruited participants and conducted qualitative interviews and focus group discussions between May 16 and August 12, 2024, until data saturation was reached. PAC members who indicated their interest in participating in the interview were first contacted by a female research assistant (MS; MPH-prepared) to schedule an initial review of the consent form, including the study objectives, overview of interview, and preference for focus group discussion or interview. MS had no relationship with the PACs or sepsis research networks prior to this contact. During the initial review, MS introduced herself and her role in the study. Participants were provided with the option of either participating in interviews or focus group discussions as we recognized that some participants would receive emotional support from discussing these issues with peers who have similar experiences, while others prefer one-on-one interviews. Participants were given one week to review the consent form and make any inquiries to the study team before providing an electronic copy of their signed informed consent to MS. MS then scheduled either an interview or focus group discussion with the participant. The focus group discussion was scheduled once an appropriate group size (n = 6) was reached. Participants were offered $25 per hour (in the form of a gift card) for their time participating in the in-depth interview or focus group discussion. These individuals were also reimbursed for additional costs (i.e., childcare) incurred as a result of participating in this study if discussed with MS before the interview took place. Participants were informed that they would still receive compensation even if they needed to end the interview early.

A semi-structured interview guide was developed by the study team (SN, MV, MMB, KR, FS), as described above. The interview guide was pilot tested with a patient partner who was not involved in creating the interview guide. No significant changes were made to the interview guide and the response from the patient partner was included in the final analysis. Interview topics included: sepsis experience, recovery journey, impact of PAC engagement, and experience with PACs. A trauma-informed lens was used to minimize potential triggering of emotional stress related to sepsis experiences while enabling open-ended exploration of the experiences of sepsis survivors and their families. Prior to beginning the interviews, all participants were provided with a list of appropriate, available, and affordable mental health services and reminded they could stop the interview at any time.

The interviews were 30–60 minutes, and the focus group discussion was 90 minutes. All interviews and focus group discussions were conducted virtually by MS from a private location within the research team’s office and audio and video recorded on Zoom. Participants were free to join from a location of their choice. No repeat interviews were conducted. MV attended the focus group discussion and first interview conducted to provide supervisory support for MS. MV had previously met two participants (virtually), as these individuals were also members of the study team, but otherwise had no prior relationship with the participants. MS, MV, and SN met after every interview to discuss field notes and progress to data saturation. One participant dropped out after consenting to a focus group discussion due to scheduling conflict, one participant initially scheduled for a focus group discussion completed an interview, and no interviews ended early. No interview transcripts were returned to participants. A summary of results was prepared and distributed to participants after data analysis was complete.

Interviews and the focus group discussion were transcribed verbatim and analyzed thematically [22] using NVivo 14 (QSR International, Melbourne, Australia). Our analysis was informed by a phenomenology approach, which focused on understanding the meanings participants attributed to their lived experiences and allowing themes to emerge from the data [23–25]. The transcripts of three interviews were reviewed by the research team (MS, MV, and SN) who identified key themes and developed an initial coding framework. These researchers consistently discussed the frames and their interpretation of the qualitative data with a patient partner (MMB) until all coding frames were agreed. Coding was done manually by MS and MV. All coded transcripts were de-identified to protect the confidentiality of study participants and were reviewed by MMB, JS, and FS. The research team met regularly to resolve any discrepancies and to ensure consensus was reached.

Ethics statement

All participants provided written informed consent. Transcripts and survey responses were de-identified and stored in a secure and password-protected location that can only be accessed by members of the study team. Ethics approval was obtained from the UBC/Children’s and Women’s Health Centre of British Columbia Research Ethics Board (H23-03622).

Sepsis experience

Regardless of the cause, participants’ sepsis experiences were sudden, severe, and life-altering (Table 2). Many participants faced misdiagnosis and late detection. Others experienced sepsis as an unexpected complication following surgery. Both survivors and their families frequently expressed receiving poor communication from healthcare providers regarding sepsis diagnosis and post-discharge care.

Recovery journey

Most participants had no expectations for recovery, due to the lack of information shared at discharge about the mental, physical, and cognitive impacts of sepsis that they would experience. Some survivors were never told that they had sepsis, contributing to their lack of expectations. Participants described many physical impacts (Table 3) that affected their ability to complete everyday activities. All participants faced significant mental health challenges following sepsis, and some reported post-traumatic stress disorder and suicidality. Survivors often felt isolated and alone in their care and recovery. Many survivors sought psychiatric care for mental health support, often on their own, as this support was not integrated into their sepsis care. Cognitive challenges were described as a common result of sepsis by the participants. These difficulties, including memory loss, impacted their daily functioning and ability to return to work or engage in certain PAC activities. Caregivers and other family members struggled witnessing their loved ones experience sepsis and navigating decision-making, in part due to the lack of information and support provided for caregivers and family members.

PAC characteristics

PACs were composed of empathetic and supportive individuals with a common goal of advocating for improvement in sepsis care and research (Table 4). Many participants highlighted the need to engage with more family members and caregivers, as “they’ve had different lived experiences” (P6 – sepsis survivor) that could enrich the work of the councils. Some respondents felt the council would benefit from a wider range of values and insights, as they felt certain voices were dominating the decision-making processes. Most participants valued the recognition and compensation that they received through their PAC involvement.

Responses from the participants agreed that PAC meeting times and outlines, study opportunities, and commitments were well communicated. PAC members were often consulted regarding availability, and all meetings were conducted virtually. However, those who were able to join PAC meetings during work hours emphasized the challenge of making a ‘mental switch’ (P8 – sepsis survivor), switching quickly between their roles as a sepsis survivor and their professional roles beyond the PAC. Further, some respondents noted the lack of clarity regarding roles and responsibilities in the council, and the need for more frequent reminders of the committee’s purpose and structure. Participants often struggled to characterize the specific activities that they contributed to, and did not always distinguish between activities led by the PACs, research networks, or individual research teams.

Characteristics of PAC participation

Respondents initially had no expectations regarding their participation in PACs, largely due to the lack of specificity in communications describing how members could contribute to the PACs and the impacts of this involvement (Table 5). Many participants were surprised, stating they “didn’t expect for [their] voice to be so valued” (P2 – sepsis survivor). A common reason for joining PACs was to better understand what had happened to them or their family members during their experience with sepsis. Using this knowledge, participants wanted to advocate for sepsis awareness among the public and healthcare workers to ensure earlier diagnoses for future sepsis patients and improve communication about post-discharge support to enhance the recovery of current and future sepsis survivors. Another key motivator for joining PACs was to connect with other sepsis survivors and caregivers.

Participants joined PACs at various stages of their sepsis recovery, ranging from a few months to over 10 years after their initial sepsis experience. Those who joined years after their sepsis experience reported less direct impact of PAC involvement on their sepsis recovery. However, these participants recognized other positive effects, such as the normalization of their experiences and a strengthened sense of community. Participants emphasized the importance of understanding one’s mental and physical capacities and ensuring that involvement has a “net benefit” (P5 – sepsis survivor) on their recovery from sepsis.

Impacts of PAC involvement

All participants mentioned that PAC involvement can impact community sepsis awareness, recognition, management, and recovery (Table 6). Participants highlighted some of the impacts that their PAC involvement has on the council itself, including benefits brought to the council from applying their professional skills and expertise to council activities and how they contributed to growing council membership by raising awareness of the impacts of PAC involvement. PAC members were able to better understand sepsis and research as a result of their involvement in the councils and were able to share the knowledge with family members which further “helped them in their [mental and emotional] recovery” (P11 – caregiver). Engaging in PACs allowed members to share their sepsis experience(s) with others, leading to feelings of fulfillment, strength, and connection with fellow survivors and their families.

Future recommendations

The in-hospital sepsis experiences and post-discharge challenges described in our study re-enforce the need for enhanced patient-healthcare provider communication on the long-lasting impacts of sepsis and improved post-sepsis care pathways in Canada, and globally. There have been efforts to improve the hospital to home transition for sepsis patients [29], but these practices have not been widely implemented. Our study highlights the important role that patients and families should have as research partners involved in developing and evaluating post-sepsis care pathways and as individuals who support their peers in recovery as part of these pathways. Improved communication about roles and the benefits of engagement may enable recruitment of more diverse voices of sepsis survivors and their families as research partners. Addressing this gap in current research is critical, particularly in sepsis research, as equity-deserving communities face a disproportionately high burden of sepsis [3,30,31]. Educational materials on post-sepsis syndrome provided to sepsis survivors at discharge may be a venue for communicating benefits and recruiting additional partners; however, careful consideration of the timing of recruitment relative to a patient’s journey and processes for supporting safe and respectful engagement is needed.

Limitations

Due to our sampling population, which only included current PAC members, our results are biased towards positive experiences with PACs and recovery from sepsis. Further, our results may not be generalizable given the small sample size and the limited sociodemographic diversity within our study population. The small sample size also made it difficult to assess the impacts of specific PAC activities or characteristics on recovery. Participants also experienced difficulty distinguishing between specific activities, further contributing to this limitation and highlighting the need for clearer communication by the research networks. Despite these limitations, the findings are strengthened by the study team’s extensive experience in sepsis research and their lived experiences with sepsis, bringing a unique and comprehensive perspective to the study.