JMIR Publications

ABSTRACT

Background:

There has been a shift in critical care from a focus on survival alone to considerations of quality of life and longer-term recovery. The large majority of people with a life-threatening illness that is treated in an intensive care unit (ICU) will now survive. Among these survivors, more than half experience post-intensive care syndrome (PICS) – a myriad of physical, emotional, and cognitive challenges which often co-occur.1, 2 Physical impairment can include muscle weakness, pain, and fatigue, while cognitive impairment can manifest as impaired memory, poor executive function, and inattention.1, 3-5 The most commonly reported psychological challenges include anxiety, depression, and symptoms of post-traumatic stress disorder.3, 4 PICS can endure long-term; although the majority of research has focused on the first two years after hospital discharge.6, 7 As a consequence of PICS, survivors commonly experience difficulties with daily life and poor health-related quality of life.8 Healthcare needs can also be substantial, with pooled data indicating that 38-65% of critical care survivors are readmitted to the hospital in the first year after critical care discharge.9 Research over the past decade has yielded robust evidence regarding PICS. However, much of this evidence has been focussed on a relatively narrow range of medical challenges deemed important by researchers, overlooking the priorities identified by survivors themselves. Current PICS research has described challenges to self-identity, existential worries, disrupted family and interpersonal relationships, financial difficulties, and employment challenges. 1, 3 However, the broad spectrum of issues that each survivor faces after critical illness and the contextual factors that help or hinder their experiences remain underexplored. Further, only limited research has identified survivors’ perspectives on what is important. Moreover, while the development and dissemination of information that describes PICS is necessary, it alone is likely insufficient to fully support survivors and their families. There is a pressing need to explore effective ways to communicate the broader impact of critical illness. This includes extending the focus beyond mere medical issues to address the myriad ways in which life is altered and the diverse experiences of those affected. Efforts to complement medically-focused education with innovative communication and engagement strategies could greatly enhance support for survivors. Photovoice methods, conceived by Wang and Burris,10 are grounded in the tenets of participatory action research where community members are empowered to capture and share their health and illness experiences using photographs and narratives. Photovoice provides a process through which participants create a visual metaphoric representation of illness, facilitating the production of rich, nuanced narratives that convey their experiences, which can extend existing notions of illness and wellness.11 The photovoice method introduces a unique approach to applying analytic strategies to interpret photographs, thereby disrupting the dominance of oral data alone and providing insights into different spheres of the illness experience.11 Photovoice goes beyond verbal interviews and text alone and is an excellent means for distilling nuanced, emotional, internal, and subjective experiences.12 Additionally, Photovoice empowers participants to not only document but actively shape, interpret and articulate what matters to them in their health and illness narratives, thereby challenging conventional ways of understanding and representing these experiences. Moreover, Photovoice can generate portrayals of health challenges that complement medical information. In other illness contexts, people have expressed a desire for experiential portrayals that convey complex and diverse experiences from patients’ perspectives.13 When a person who has a condition views authentic experiential portrayals of said condition, they can glean insight, hope, and validation, and feel they are not alone.14 Photovoice, in particular, has been cited as creating the potential to raise awareness of issues that matter to communities as a step to advocacy leading to social change.15 Using a longitudinal qualitative design, our team has been investigating critical illness recovery at home and drivers of hospital readmission through patient and family caregiver perspective evidence. Recruitment and data collection for the larger project began during the COVID-19 pandemic, forcing our team to pivot to virtual interviews. Thus, we were no longer able to interview people in person in their homes to understand their recovery in the context of their daily lives. As part of the pivot to online data collection, we wondered about the potential value of Photovoice in facilitating pieces that were missing from the original home visit plan for data collection, including participant self-expression and self-reflection; articulation of aspects of critical illness recovery of priority to survivors; and the generation of engaging portrayals not available elsewhere. Further, one of our patient partners (A.D.), who had extensive experience with Photovoice, saw the potential of Group Photovoice with participant dialogue and discussion to garner additional insights into the diverse experiences of critical illness recovery. We did not know whether a web-based Group Photovoice would be feasible and what the impact of participation would be on study participants, therefore the current pilot study was planned.

Objective:

This pilot study aimed to 1) describe ICU survivor recovery after hospital discharge depicted through survivor-generated photographs and discussions about their photographs, 2) assess the feasibility of recruiting and retaining participants in a web-based Group Photovoice focused on ICU recovery, and 3) describe the impact of study participation.

Methods:

Study Setting, Team, Design and Methodology This research was conducted in British Columbia, Canada, where publicly funded universal healthcare is provided to all residents. This patient-oriented research was co-led by a patient partner (A.D.) who had lived experience of surviving a critical illness and was involved, not as a research participant, but as a research team member from study conceptualization to knowledge dissemination. Our team collectively had clinical expertise in critical care, research expertise in survivorship, qualitative methodologies, and arts-based methods, including Photovoice. Along with the use of Photovoice methodology, where participants generated images to represent their critical illness recovery experiences, we adopted a qualitative Interpretive Description16 approach when conceptualizing the study and collecting and analyzing data. Interpretive Description is rooted in the applied health disciplines and was selected for its ability to generate evidence that is relevant for clinical implications.16 Participants and Recruitment We included participants who had received care within the past 5 years in a Canadian ICU, were admitted to the ICU for a minimum of 48 hours, were 19 years or older, spoke English, and could provide informed consent. Exclusions included individuals with neurological diagnoses (brain trauma, intracerebral bleed), those who had undergone cardiac surgery or organ transplantation, or were receiving palliative care. We recruited participants from late fall of 2022 to early winter of 2023 by distributing electronic study posters via e-newsletters and shared on the websites of several organizations that distribute information to patient audiences. The posters were promoted on social media platforms including X (formerly Twitter), LinkedIn, and various Facebook groups. We used snowball sampling, where participants were invited to share study details with other potentially interested individuals. Prospective participants who expressed interest by contacting the study team by telephone or email were screened for eligibility, provided study information, and had the opportunity to seek clarifications or ask questions regarding their participation. All participants provided electronic informed consent. Group Photovoice Discussion Sessions In preparation for the group sessions, the patient-partner co-lead (A.D.) conducted one-on-one virtual meetings with each participant to provide them with an opportunity to recount their experiences with critical illness and establish a shared understanding and connection with the facilitator. Subsequently, the Group Photovoice discussion sessions included five two-hour weekly virtual sessions via Zoom, facilitated by the project co-leads (A.F.H and A.D.). The discussion sessions occurred from January to February 2023. The first session served as an introductory session, whereas the subsequent sessions involved participants each presenting their photos and discussing them. Each session included a brief icebreaker and overview of the session topic, as well as a wrap-up activity and review of instructions for the next session. Participants were invited to take digital photographs with a device of their choice and upload the images to the University of British Columbia’s secure version of OneDrive (Microsoft OneDrive, 2007). A Photo Reflection Form was emailed to participants to assist in reflecting on their photos before each discussion session, though these were not submitted to the research team. In group sessions two to five, each participant shared and discussed two of their photos with the group, pertaining to distinct themes assigned for each week: going home from the hospital, organizing life and using technology, mental health, and reorienting life. These themes were informed by our in-progress complementary qualitative study investigating critical illness recovery at home and drivers of hospital readmission. See Table 1 for an overview of the Group Photovoice sessions. The group co-facilitators used a discussion guide for each week’s session to ensure each participant had the opportunity to respond to the participant sharing their photo and to ensure all participants were able to share their photos in the two hours. Data Collection The group photo discussion sessions were video recorded, transcribed verbatim using the machine transcription service Temi.com, accuracy checked, and then digital photos were embedded into the corresponding sections of the transcripts. After completing all five photo discussion sessions, one team member (K.L.) conducted one-on-one, semi-structured interviews with each participant virtually via Zoom. We utilized a semi-structured guide (see Supplementary Material) that prompted participants to describe their experiences and perspectives of critical illness recovery and the impact of participating in the Group Photovoice sessions. Each individual interview lasted 45-60 minutes. Analytic Approach Guided by Interpretive Description, we took an inductive thematic approach to the analysis of transcripts aiming for interpretation rather than pure description and with an eye to clinical relevance. We used data management software NVivo (version 12; Lumivero, Inc.) and conceptual diagramming software Miro throughout the analysis. Several study team members independently reviewed the transcripts to become familiar with the data. One team member (R.H.) read the transcripts multiple times and used an inductive coding approach to generate initial codes that represented initial patterns, ideas, and diversity related to the research objectives. Through research team dialogue and discussion, these initial inductive codes were grouped and regrouped to create a coding frame that was then applied to all transcript data. Coded data were then extracted and inductively analyzed to identify the main themes and ideas within each theme and to determine an organizing structure for presenting the findings. This involved diagramming to visualize the themes and the use of constant comparative methods to compare and contrast within and across participants, moving from descriptive to more interpretive analysis. Research team members discussed and iteratively refined the evolving analysis during bi-weekly meetings. Ethics The study protocol was approved by the University of British Columbia Behavioural Research Ethics Board H22-02507. After eligibility screening, a REDCap link containing an e-consent form was emailed to participants and all participants provided electronic informed consent. Consent was also reaffirmed at the beginning of each one-on-one interview. Participants each received $275 in e-gift card honoraria ($50 for each discussion session and $25 for the one-on-one interview) and were compensated after each session or interview.

Results:

Overview A total of 4 women and 1 man participated, with a mean age of 48.6 years (range 22-64), with the majority identifying as Caucasian (4/5), college or university-educated (5/5), were married or common law (4/5), and lived in a large city (4/5). Participants were admitted for sepsis (2/5), bradycardia (1/5), pulmonary embolus (1/5), or pneumonia (1/5), with the majority having been in the ICU <10 days (4/5). Before critical illness, the majority were employed (4/5); after critical illness, a minority were employed (2/5), and the majority did not have difficulties living on their total household income either before or after their critical illness (4/5). Participants reported that at the time of the study, they had no problems with their physical activity (2/5), mild impairment in their level of physical activity (2/5), or some change in their level of physical activity such that they required bedrest less than 50% of waking hours (1/5). The participants submitted a total of 42 photographs. The aspects of critical illness recovery that featured prominently in group photo discussions, survivor-generated photos, and individual interviews included: 1) protracted physical recovery, 2) profound psychosocial challenges encompassing fear of the future, emotional turmoil, shifting self-perception, and changes in family dynamics and feelings of disconnection, 3) discrepancies in health needs and support offered, and 4) the need for perseverance and resilience. The web-based group format was feasible and characterized by survivors as an opportunity to make sense of and share their experiences, feel heard, validated, and supported by others, and learn from their peers. Protracted Physical Recovery Through participant-generated photos and commentary, the survivors portrayed the harrowing and physically demanding journey of recovery from critical illness at home. Many recounted the shocking realization of their profound physical decline, particularly the severe loss of muscle strength, which had “wasted away,” especially after extended ICU and hospital stays. The extent of their impairment was starkly highlighted by one survivor’s recollection of their inability to perform even basic daily tasks, drastically diminishing their quality of life: “I couldn't feed myself. I couldn't look after myself. I couldn't do anything.” Others characterized their recovery as “long and arduous,” where “it took [them] months to resume any muscle strength and get back to walking.” Despite making significant progress in the months and even years following their critical illness, some continued to grapple with persistent aftereffects, such as impaired physical functioning, chronic pain, and breathlessness, expressing deep concern that these lingering health issues would “always be a part of [their] life,” or feared that “it’s going to hurt like this forever.” Given the severity and persistent physical symptoms and impairments, survivors described their physical home environment as fraught with unexpected obstacles to their recovery. For example, one survivor’s photo of the stairs leading to their entryway vividly illustrated a tangible barrier that also symbolized the profound and related psychological challenges they faced (Figure 1A). They described the stairs looking unsafe, and given their physical condition, they doubted their ability to fix them, feeling daunted and overwhelmed with tasks once easily performed. Obstacles like these stairs not only served as physical barriers, but also as stark evidence of a frightening and arduous recovery. Other survivors captured images representing the significant and sometimes extensive adaptations required for their recovery, including modifications to couches, bathtubs, toilets, and living and sleeping arrangements. For example, one survivor realised their mobility challenges, stemming from deteriorated muscle strength, prevented them from using their high bed or sofa. In response, their son made structural adjustments to lower and firm up the sofa, enabling them to sit and rise with the aid of their walker. With a photo titled “Ground Zero” (Figure 1B) another survivor described their couch as the central hub where they spent their days. For all survivors, the initial recovery at home appeared to be marked by seemingly insurmountable obstacles that demanded immense patience and time to overcome. Profound Psychosocial Challenges The survivors’ photos and commentaries highlighted the profound and intense emotions they endured while recovering at home including fear of the future, emotional turmoil, shifting self-perception, and changes in family dynamics and feelings of disconnection. Fear of the Future Following their hospitalization, the survivors described the uncertainty and fear when initially coming home and then beyond. For some, leaving the safety of the hospital left them apprehensive and fearful about how they would cope at home, the support they would need, and what the future would entail. A photo of a moss-covered log (Figure 2A) represented the potential dangers one survivor feared when “crossing over” from the hospital to home and “not knowing what was on the other side. I had to get across that log to move forward on my healing journey, but I was tentative, scared, frightened.” In contrast, another survivor described home as “a safe place,” where they anticipated feeling better supported in their recovery compared to the hospital. Considering all they had endured, along with the extent and severity of ongoing health issues, the survivors recalled questioning whether they would ever fully recover physically and emotionally and feared an unpredictable future. One survivor commented on their photo (Figure 2B) titled “Facing Uncertainty:” “Everything was sort of uncertain and unpredictable and you didn't kind of know where you were going. You didn't know what was going to happen at the end and you didn't know how you were going to come back from that.” (Participant 4) The repercussions of surviving a critical illness were seen as long-term albeit unpredictable, with one survivor likening their outlook on future physical health to “a road ahead” that “[isn’t] clear,” invoking feelings of discouragement and fear. Several survivors described an underlying sense of dread that they would not be able to recover or that they would face further health setbacks. Moreover, reflecting on their perceived fragile health, survivors worried about their heightened risk for a recurrence of their initial illness that would land them back in the hospital, if not the ICU, as one person shared: “that's one of the post long haul symptoms I've had, is living with that fear of getting, for my case, getting sick again and ending up back in hospital and experiencing that all over again.” (Participant 3) Emotional Turmoil The surge of profound feelings —having survived a life-threatening illness, transitioning from the hospital to home, experiencing uncertainty, fear, anxiety, depression, and profound loneliness—culminated in what one survivor characterized as “emotional turmoil.” A survivor’s photo of cracked eggs (Figure 3A) symbolized their sense of feeling physically and emotionally “shattered and fragile,” incapable of piecing themselves back together, and overwhelmed by the extent of recovery they were facing. Another survivor described the emotional volatility and struggles they experienced after returning home: “One of the hardest things in coming home was, I was feeling so vulnerable and just crushed and feeling my emotions were all over the place.” (Participant 4) This emotional fragility was especially pronounced for another survivor who wished to avoid appearing vulnerable in front of others and sought invisibility during these moments. When overwhelmed by their illness or feeling like a burden to their family, they described wanting to escape their feelings and “hide in the shadows,” like the hidden angel figurine depicted in their photo (Figure 3B). The profound emotional turmoil seemed to be exacerbated by the significant physical challenges the survivors faced. Accustomed to independence before their critical illness, being forced to rely on others for simple tasks at home contributed to them feeling like they were sick and incapable, heightening their sense of vulnerability even with their close family members. For example, one survivor shared the discomfort of needing their mother’s assistance with showering, which left them feeling extremely embarrassed during and after those moments. While another survivor spoke of their gratitude for the deep love conveyed through their son’s assistance around the home, the heavy reliance on others for daily tasks also instilled a profound sense of vulnerability and even shame and guilt. Transitioning from being independent and active before critical illness to relying on others, even close, trusted, and loving family members, was a disorienting change that resulted in emotional turmoil. Shifting Self-Perception Upon returning home, the survivors conveyed feeling as though everything had changed: their home, themselves, and how others perceived them, as described by one survivor: “Your house was different. You were different, you were different than what your neighbours knew you as because of your illness.” (Participant 3) The survivors shared the experience of feeling fundamentally altered by their critical illness, as conveyed by one survivor who indicated that, “being hospitalized created distance and disconnect from who I was before and from others, making the world feel out of reach.” Several survivors attributed their lower self-esteem and self-worth to negative hospital experiences. One survivor linked the “dehumanizing” care they received while hospitalized to their diminished self-worth and “a worse perception of myself.” Another survivor described feeling disrespected and belittled by overhearing ICU clinicians’ condescending comments about themselves and other patients, which “was really upsetting to hear.” These experiences eroded their sense of self-worth and dignity, lingering for months and even years into recovery. Shifts in self-perception also appeared to be closely tied to physical and functional impairments. For example, one survivor photographed a broken pedestrian light (Figure 4A), indicating that: “the damage represented my perceived lower value and that I needed to work harder to prove my competence. Having so many physical signs of poor health on my body was a constant reminder of how I was of less worth compared to others… It reminded me of myself as I felt powerless and weak, but the light was still glowing, and like myself – trying to show it was functional and hopeful… I was still trying to tell the world, tell my family and peers that I was very much capable and still very strong, but it was really clear from the outside that I was quite broken and I wasn't totally fixed.” (Participant 1) The survivors commonly questioned how to reconnect with the new version of themselves, both “mentally and physically.” Given shifts in their self-perception, some felt the need to rebuild their self-identity and navigate insecurities through environmental- and self-modifications. Seeing their much-altered reflections in the mirror was described by two survivors as triggering strong negative emotions. One survivor recalled removing all mirrors in the house, making drastic wardrobe changes, and cutting their own hair, in what they indicated were “reckless attempts to feel a sense of self.” For this individual, re-establishing their self-identity and self-esteem was made difficult by environmental triggers, such as sounds, smells, and lighting that reminded them of the hospital and how they felt about themselves during that time, “which still triggers negative emotions for me two years later.” Other survivors described feeling lost while trying to navigate their shifts in self-perception and doing so through self-destructive or unhealthy coping mechanisms. For example, a photograph of staples on a telephone pole was taken by one survivor (Figure 4B): "The remaining staples and tacks remind me of the surgeries I’ve had, leaving staples in my lungs and metal twist ties in my chest. At one point, I just thought, what is the use? I'm doomed anyway. So, I started smoking three years after I'd had heart surgery. I really had that mindset, it was just like, I'm doomed." (Participant 2) With time, some described cultivating awareness of what they needed to help bolster their self-worth and self-esteem. For example, one survivor indicated they came to realize they needed “to surrender and just see things differently…find happiness within [myself]…without keeping friendships or situations that don’t serve [me] anymore” (Participant 5). Changes in Family Dynamics and Feeling of Disconnection After having relied so heavily on hospital staff, the survivors described longing for independence in their daily lives during their recovery. Yet, their impaired health and functioning meant they were reliant on their family caregivers in ways they had not been before, and they were unable to resume their roles in the household, such as cooking, shopping, and caring for others. This contributed to shifts in how they perceived their roles in the family and appeared to result in changes in family dynamics. While the survivors expressed gratitude for the love, care, and support of family members, they commonly indicated feeling overly reliant on others and guilt for burdening them. The survivors’ photos and narrations also conveyed a profound sense of emotional disconnect from their family members, who survivors thought could not fully relate to their life-threatening ordeal and subsequent challenges. One survivor expressed this sentiment: "I mean, unless you've really experienced that and you've been through that, I don't think people really do understand or can understand." They perceived that their families were “happy [that] they were very alive and doing everything they normally do,” and ready to move on from the critical illness experience. Yet, the survivors continued to grapple with the physical and emotional repercussions. Many felt as if their lives had come to a stop while everyone else’s continued, making it difficult to feel connected with friends and family and exacerbating feelings of being misunderstood and lonely. This sense of alienation left survivors perceiving themselves to be on a "different level, different frequency, different growth" than their family members. Despite yearning for validation and understanding, several survivors described being unable to confide in their family members and compelled to protect them, even at the expense of their own emotional well-being. Consequently, one survivor created a photo of themself smiling but overlayed bright blue tears on their cheeks to depict how they resorted to masking their emotions, leaving them feeling utterly alone with their physical and emotional pain. They explained, “Despite experiencing vulnerability and emotional turmoil, I felt compelled to protect those around me and prioritize their well-being. My family, unaware of the severity of my condition, struggled to cope, and I was preoccupied with their emotions rather than addressing my own. I faced anxiety, panic attacks, and physical pain alone, unable to openly express my struggles… I felt like for everybody else I had to put on that mask, or slap on that smile, or put on that happy face and just pretend that everything was fine… I was trying not to make everybody else worry.” (Participant 4) Another survivor recounted negative interactions with their family members, who conveyed limited empathy and understanding of the suffering they continued to endure, indicating they had: “no one really in [their] immediate environment that [they] could truly empathize with or that could support [them].” This survivor recalled how their family members expressed disappointment in the survivor’s slow recovery, making comments that gave the survivor the impression they were seen as “damaged goods.” They described feeling rejected, invalidated, and ashamed of their ongoing struggles, having no one to turn to in their immediate social network for practical or emotional support, and contributing to a profound sense of sadness and isolation in recovery. The Need for Perseverance and Resilience Through their photos and narratives, the survivors depicted the immense difficulty of confronting numerous challenges while recovering at home. Still ongoing, this process was a bumpy road – a journey fraught with setbacks and obstacles. The effort required for recovery appeared to be extensive, with survivors making tremendous efforts to heal and resume their family, work, and social roles and responsibilities. However, with no advice on how to do so and uncertainty about what they could do, this was not always straightforward, and setbacks were commonly described. For example, one survivor’s photo of their apron (Figure 5A) represented their resumption of previous responsibilities that were ultimately too much to manage, leading to a pivotal moment in their recovery journey: “After a period of progress and resuming my daily responsibilities, exhaustion and emotions caught up with me, leading to a traumatic panic attack three months later. Recognizing the need for space and clarity, I took a trip to Vancouver, bringing my baby with me. This time away allowed me to reflect, reassess my priorities, and make important changes in my life, including re-evaluating friendships and focusing on my health and family. Hitting rock bottom physically and mentally ultimately led me to emerge stronger and more aligned.” (Participant 5) With time, all the survivors indicated that their mental health improved, though they indicated this took intentional effort. For one individual, their beloved cat provided a “sense of normalcy and unconditional love,” providing constant companionship and “serving as a source of comfort during times when I felt misunderstood or alone.” Two survivors sought out mental health counselling, which they indicated was helpful, though their counsellors did not understand the mental health challenges commonly experienced after critical illness. Others highlighted finding ways to help make sense of their experiences, express and manage their emotions, process all they had and continued to grapple with, and set future goals. Useful tools included journaling, vision boards, and reading about others’ experiences and sharing their own experiences online. The survivors also shared their journey of recovery as encompassing a shift in their self-perception, personal growth, and a transformed outlook on life. Some described learning to embrace their current circumstances by reframing their fears and obstacles as opportunities for mental and physical self-growth, as highlighted by one survivor’s comment that their "fears actually could be the best thing that [ever happened]." Others portrayed self-acceptance of the “new versions” of themselves as key to embracing their current circumstances. “It's okay to accept that you may never be that former self again, but that you can still be whole and move forward and, and enjoy life, and just be that unique person that you are.” (Participant 3) Some survivors appeared to draw strength from the knowledge that they survived a life-threatening illness and continued to persevere through recovery, developing a perspective that they would be able to move forward even in the face of future difficulties. Acceptance, positivity, and resilience were fostered by cultivating an attitude that they were a “work in progress” and that “this too shall pass.” The survivors described recognizing and embracing the imperfection in recovery, emphasizing the significance of trying to have a “humbling outlook and gratitude in life.” One survivor symbolized their ongoing healing and building of resilience with a photo of a hat they were knitting (Figure 5B), indicating that “just like this unfinished hat, I will continue to work on myself, knowing one day I will reach a point of completion and resolution.” Unmet Health Needs Throughout group discussions and individual interviews, the survivors remarked on significant unmet health needs due to insufficient follow-up care after being discharged from the hospital. They emphasized the desire for a mentorship/support group or a point of contact for help when leaving the hospital to help address the “massive gaps in [the] healthcare system.” They also suggested ICU diaries and journals to help survivors and their family members fill memory gaps, as many found it difficult to recollect their ICU experiences. The survivors commonly indicated that the lack of mental health support severely and negatively impacted their recovery: "If there's anything the system really needs to improve on it’s the treatment of patients and also to focus on the mental aspect of being hospitalized because we felt like once we were discharged, they kind of just forgot about us and they never really followed up." (Participant 1) The survivors highlighted the intrinsic link between mental and physical health in their commentaries and photos (Figure 6), noting that “if you're not well mentally, you can't do well physically.” They expressed frustration with the prioritization of physical symptoms while neglecting emotional and mental health aspects. Feasibility of Web-Based Group Photovoice The feasibility of web-based Group Photovoice was demonstrated through the recruitment and participation of 5 individuals. These participants took part in an introductory session and 4, 2-hour group photo discussion sessions and also completed an individual interview. However, given that there are no dedicated follow-up clinics, aftercare programs, or recovery initiatives in the province to recruit through, reaching eligible participants proved challenging, which prolonged the process of finding participants available and willing to commit to the project. In preparation for the group sessions, the patient-partner facilitator who also shared the experience of being an ICU survivor, conducted one-on-one virtual meetings with each participant. These preliminary meetings allowed each survivor to recount their experiences with critical illness, establishing a shared understanding and connection with the facilitator. A few months following the completion of the group sessions, all survivors became patient partners to pilot the development of a website17 to disseminate their curated photos. Impact of Web-Based Group Photovoice Although the web-based Group Photovoice was not initially intended to have a therapeutic impact, survivors overwhelmingly reported immense benefits from participating. They described the power of images in making sense of and sharing their experiences, feeling heard, validated, and supported by others, and learning from their peers. The Power of Images: Making Sense and Sharing The group Photovoice experience allowed each of the survivors an opportunity to revisit and reinterpret their ICU experiences and subsequent recovery at home. Participants reported that the structured photograph assignments prompted them to “go back and self-reflect” and make sense of all they had been through. This introspective journey week by week was not only therapeutic but also empowering, reinforcing their identities as resilient survivors: “Especially towards the end [of the Group Photovoice] I felt a lot more in touch with myself and a lot less ashamed of who I was because I knew that having survived the ICU isn’t a shameful experience anymore, and rather, it's indicative of how much I've gone through.”(Participant 1) Moreover, the group setting offered a unique platform for sharing and interpreting the content of their photographs. The survivors expressed surprise and appreciation for the depth of emotional expression and understanding facilitated by the medium of photography. “It amazed me that I realized the power of the photos and how much emotion can be conveyed and that you can share just from the picture.” (Participant 4) Orienting the collective sharing sessions around the photographs provided an opportunity for individual expression and communal connection, as participants found resonance and validation in the images and explanations of others: “There [were] a lot of emotions at times. Some of them were very powerful images and spoke very profoundly to my own journey and my own experiences. So even though we were responsible taking our own photos, I think we all saw- sometimes you looked at [someone else’s] picture and thought ‘[I can] hardly wait to hear the story behind the picture.’ And then when they started going there, you went, ‘Wow, that's pretty profound.’ And that's so true and each one of them always seemed to hit the mark once you got the explanation.” (Participant 3) The process of sharing and interpreting photographs within the group context required a high degree of openness, which participants also found “humbling” and a “privilege.” Feeling Heard, Validated, and Supported by Others The survivors described discovering a powerful sense of community, exchanging advice and “words of wisdom” with others who had also endured critical illness. This newfound connection was characterized as providing strength and validation, helping them realize they were not alone in their struggles. Survivors expressed a sense of being profoundly heard and understood in a way they had not before and “like nobody else could.” One survivor’s description underscores the deep emotional connections, the profound impact of empathy, and the healing that was facilitated by the group discussions. "Just to be able to talk about it so freely and to know that people can understand and empathize was so comforting. And I think I really needed that. I don't think I really realized how validating it would be to talk about it with a group where they've also experienced the same treatment and same kind of hospital experience. It makes me quite emotional to think that...I don't want to call them strangers, but people [I] have never met, really were able to make me feel so whole and so strong again." (Participant 1) Further, the survivors highlighted that the development of group cohesiveness was rapid and profound. They reported an immediate sense of belonging and genuine care, contributing significantly to a supportive and safe environment. “I don't know if it was just the nature of who was in the group, but it was very wonderful to see that there was such trust and there was such willingness to engage one another and provide support to one another.” (Participant 3) This environment was characterized by an instant comfort level and a caring space that facilitated open and meaningful exchanges, as noted by multiple survivors. This nurturing atmosphere was conveyed as crucial in enabling the survivors to share sensitive personal experiences and receive empathetic feedback. Several remarked on the transformative power of group Photovoice, describing it as a “genuine expression of experience,” “part of a healing process that [I] didn’t even know existed,” “the missing link in [my] recovery,” and a potential “form of therapy.” Learning From Their Peers Survivors expressed that their fellow participants helped them learn coping skills and ways to adjust to their current situation. One survivor commented on reorienting their outlook to a more “positive approach” based on what another survivor had exuded. The survivors appreciated “all these different views, points of view, or at least expressions of experience.” The exposure to the group’s diversity in age demographics, life experience and time duration from ICU discharge were seen as major strengths since it gave participants an opportunity to learn from the vast range of experiences. Being able “to provide that sense of hope and encouragement to those that aren't quite there yet” was described as healing in itself. Empowered by the empathy and compassion of fellow participants, survivors noted they felt that they could lower their protective guard, embrace hope for their ongoing recovery, and offer comfort and support to others on a similar journey. Discussion Our findings highlight aspects considered by critical illness to be central to recovery, namely, immense physical health challenges along with fear of the future, emotional turmoil, shifting self-perception, changes in family dynamics, and feelings of disconnection. Despite the enormity of health needs, these were not accompanied by access to appropriate healthcare services or support. Recovery was further depicted as requiring substantial perseverance, but also contributing to resilience and strength. The Group Photovoice web-based format was feasible and perceived by survivors to be an opportunity to make sense of and share their experiences, feel heard, validated, and supported by others, and learn from their peers. Our findings align with the robust literature describing the persisting physical sequelae and functional impairment common post-ICU 18, 19 and extend knowledge of how the home environment can be fraught with obstacles to recovery. These obstacles were unexpected and required marked effort from survivors and, oftentimes, their family members to make the necessary adaptations. Our findings suggest that functional impairments are not solely inherent to individuals; rather, the home environment plays an under-recognized and modifiable role in influencing recovery. Given that ours was a small pilot study, additional research is warranted to understand the extent and nature of obstacles to recovery commonly encountered in the home, adaptations to support survivors in their activities of daily living, and the role that occupational therapy and home assessments could play. Emotional challenges of fear of the future, uncertainty, vulnerability, emotional turmoil, guilt, loneliness, and social disconnect figured prominently in our study. These appeared to encompass a much broader array of psychological sequelae than the anxiety, depression, and post-traumatic stress that are most often described in the literature.3, 4 Further, the emotions highlighted by participants not only stemmed from physical and cognitive sequelae but were entwined with newfound dependence on others, which was couched in shame, and changes in family dynamics. Further exploration of the full scope of emotional challenges may reveal targets for innovative psychosocial interventions, like those found in survivorship research for other illnesses. For example, in the last decade, fear of cancer recurrence has emerged as a problematic long-term issue for cancer survivors, with promising treatment options being investigated.20 Similarly, while a small but growing body of literature suggests that critical illness survivors may experience changes in personal identity and outlook,3, 21 the participants in our study conveyed the importance of their experiences of shifting self-perception. Pursuing this line of inquiry in future research might inform the development or adaptation of interventions or approaches targeting identity that show promise elsewhere, such as narrative therapy.22-24 An important finding from this pilot study that warrants further inquiry was the participants’ photographs and narratives of perseverance and building of strength and resilience, which may be akin to post-traumatic growth. Post-traumatic growth is the experience of positive psychological change that can result from the struggle with life crises and trauma, and can manifest in a variety of ways, including an increased appreciation for life, more meaningful interpersonal relationships, an increased sense of personal strength, changed priorities, and a richer existential and spiritual life. 25 Jones and colleagues 26 made a solid argument for the relevance of the concept for critical illness survivors, noting parallels to other populations who experience trauma. They also proposed strategies and mechanisms that could promote posttraumatic growth during and after ICU stays and suggested avenues for future research including, integrating assessments of posttraumatic growth into ICU aftercare and self-help resources, exploring which domains and trajectories of posttraumatic growth are unique to ICU survivors, determining which interventions could foster posttraumatic growth after critical illness, and identifying effective methods to disseminate and implement this knowledge among providers to encourage posttraumatic growth in patients.26 Our pilot of the web-based Group Photovoice proved not only feasible but profoundly impactful. Participants found great value in creating and sharing photographs, which facilitated deep self-reflection and meaning-making. The one-on-one meeting with the co-facilitator/patient partner appeared to lay the groundwork for establishing rapport, trust, and connection. The group and one-on-one sharing provided a sense of being heard and validated, fostering a unique sense of community among participants. Such engagement promoted social connectedness and cohesion, with participants expressing gratitude for the empathetic and validating nature of the Photovoice sessions. The therapeutic benefits and enhancement of social ties evident in our study seem akin to benefits apparent in arts-based research, including Photovoice, reported in other populations.15, 27, 28 The use of Group Photovoice and even other arts-based methods delivered in group format ought to be studied further as a complement to existing interventions under investigation, such as peer support groups. Emerging evidence suggests that peer support among critical illness survivors can be beneficial, with many of the mechanisms similar to those we witnessed in our Group Photovoice study. By sharing experiences through peer support groups, survivors have reported diminished anxiety and concerns, enhanced motivation and hope, feeling validated, gaining a greater understanding of their ICU illness and care trajectory, and experiencing a sense of purpose in assisting others.29, 30 The participant-generated photographs and commentary in our study served as distinctive and authentic portrayals of aspects of critical illness recovery that were important to participants. Recognizing the value of these portrayals to provide insight and validation, our team piloted the co-development with all study participants of a virtual gallery as a knowledge translation strategy. Among other populations, Photovoice exhibits can be a powerful means of confronting gaps between what researchers and policymakers assume people experience and what people show that they experience and need.31 By creating space for participants to convey their own ideas and experiences, Photovoice can reinforce people’s right to be seen and heard as they choose.28 This is particularly relevant for people who have survived critical illness during which vulnerability and loss of control can be marked. Photovoice exhibits can further serve as a means of moving findings outside traditional academic settings, perhaps to be more appealing and accessible to public audiences, and a bridge to action and change at individual, interpersonal, community, institutional, and policy levels.31, 32 Further research examining the impact of photo exhibits in the context of critical illness recovery could provide novel means of raising awareness and inspiring change. Limitations This pilot study, conducted in Canada during the COVID-19 pandemic, involved four women and one man, most of whom had some university/college education and were financially stable. Consequently, the insights into critical illness recovery presented may not reflect the experiences of individuals in different geographic or socioeconomic contexts. The mental and physical strains of the pandemic may also have influenced the results. Additionally, the benefits observed from participating in web-based Group Photovoice sessions may not extend to those who did not choose to participate, or to individuals who do not see value in sharing experiences or who are not emotionally prepared for such engagement. Photovoice demands significant time and emotional investment, which many ICU survivors may not be able to afford, especially at time points in their healing when they are at their most vulnerable. While increasing access geographically, the virtual format may also limit the participation of those with minimal access to a computer or phone, possibly excluding individuals facing significant social and structural challenges.

Conclusions:

Given the compelling insights our small pilot study has provided into lesser-explored aspects of critical illness recovery, along with its potential therapeutic value and ability to foster social connectedness, future research is warranted to assess the impact of a scaled-up application. Our findings not only reveal the benefits of participation but also underscore the potential of using Group Photovoice as an innovative knowledge translation strategy that could benefit a wider audience of patients and families.