Challenges,care gaps,and coping mechanisms in patients with advanced cancer and their caregivers following palliative gastrointestinal surgery

Abstract

Background:

Palliative gastrointestinal surgery improves symptoms and health-related quality of life in patients who present with complications from advanced cancer. However, palliative surgery near the end-of-life is associated with significant physiological and psychological stressors for both patients and their caregivers. Yet literature on patient and caregiver centric narratives following surgery remains limited.

Objectives:

We aim to explore challenges, perceived care gaps, and coping mechanisms of patients with advanced cancer and their caregivers following palliative gastrointestinal surgery.

Design & methods:

We conducted qualitative in-depth interviews with 25 purposively sampled patients with advanced cancer and 13 caregivers following palliative gastrointestinal surgery. Interviews were transcribed verbatim and thematically analyzed.

Results:

There were four major themes that identified as challenges and perceived care gaps among patients and caregivers: (1) physical, emotional, and systemic challenges of living with a stoma after palliative gastrointestinal surgery, (2) emotional, existential, and relational challenges of living with advanced cancer, (3) navigating uncertainty amid suboptimal surgical communication, and (4) emotional and relational strain from lack of compassionate surgical care. Four themes identified as coping mechanisms: (1) emotion- (2) meaning-, (3) problem- and (4) avoidance-focused coping.

Conclusion:

Patients and caregivers face multifaceted challenges related to the impact of gastrointestinal surgery and their life-limiting advanced cancer condition. They also perceive significant gaps in surgical care delivery. Our findings shed light on unmet needs among patients with advanced cancer and their caregivers, highlighting opportunities for targeted intervention to improve the quality of surgical care delivery following palliative surgery.

Keywords

palliative surgery advanced cancer challenges care gaps coping surgical care

Introduction

Up to 40% of surgeries in major cancer centers worldwide are palliative in nature.¹ Among patients undergoing palliative surgery for complications that arise from advanced cancer, gastrointestinal procedures are common and comprise of 36.4% of surgeries performed.² In well-selected patients, palliative gastrointestinal surgery relieves debilitating symptoms of bowel obstruction and can improve health-related quality of life up to 1-year after surgery.^3,4

Given the palliative intent and limited disease prognoses, most surgical oncologists would avoid major abdominal surgery, opting to divert or bypass sites of bowel obstruction.^5,6 As such, ostomies are common and may be associated with short gut syndromes due to inadequate bowel lengths. Furthermore, palliative gastrointestinal surgery often results in significant post-operative complications, and reported rates of major morbidity range from 20% to 45%.^4,7 This includes superficial or deep surgical site infections, pulmonary complications, deep vein thromboses, among others.^8,9 This series of post-operative events exerts profound physiological and psychological stress on patients and their caregivers.

While outcomes of palliative surgery have been well evaluated, few studies have explored post-operative experiences, challenges, and unmet care needs of patients and caregivers.^10,11 Therefore, in this study, we explore challenges and perceive gaps in surgical care among patients with advanced cancer and their caregivers following palliative gastrointestinal surgery. We also examine their coping mechanisms in the face of such challenges. By gaining an in-depth understanding of the post-operative experiences of patients with advanced cancer and their caregivers, we seek to identify areas of unmet needs that can be used to tailor palliative surgical services to improve their quality of care.

Materials and methods

Study population

We recruited patients with incurable advanced cancer, that is, with stage 4 solid organ tumors, and their caregivers, who had undergone palliative gastrointestinal surgery with surgeons from the Department of Sarcoma, Peritoneal, & Rare Tumors (SPRinT) at the National Cancer Centre Singapore (NCCS) between March 2020 and March 2022. The Department of SPRinT is a tertiary cancer surgical unit that specializes in surgery for advanced and complex cancer, performing the majority of palliative surgical procedures at the NCCS.¹² Palliative surgery was defined based on the primary intent of surgery and performed with the overall goal of relieving symptoms and improving quality of life. Caregivers were self-reported, unpaid informal carers who perform household or medical care-related activities with or for the patient.¹³ Eligible patients and caregivers were identified by SPRinT surgeons and were approached and recruited at specialist surgical outpatient clinics between 4 and 8 weeks after surgery. Caregivers were subsequently identified through recruited patients and invited to participate in the study. We employed purposive sampling to capture a diverse range of demographic characteristics such as age, primary cancer type, and ethnicity. Patients who were unable to provide informed consent or medically unwell to participate in an interview were excluded. Caregivers who were paid by domestic workers or professional carers were excluded. The study was approved by the SingHealth Centralized Institutional Review Board (CIRB No: 2021/2455).

Data collection

We developed a semi-structured interview guide to comprehensively capture various aspects of participants’ experiences following palliative gastrointestinal surgery as elaborated in Supplemental Table 1. The guide focused on key topics, including perceived challenges and needs post-surgery, coping strategies, sources of strength during the recovery process, and experience with the surgical team. The development of the interview guide was informed by existing literature on palliative surgery, caregiver experiences, and our prior research in advanced cancer populations.^14–18 In-depth one-to-one interviews were conducted separately with patients and caregivers by an interviewer trained in qualitative researcher (DJ) either in-person in a meeting room at the clinic, or through virtual video conferences, over 60–90 min in English or Mandarin. Caregivers were not present during patient interviews, and vice versa, to ensure independent perspectives. Field notes were taken to foster reflexivity, allowing the interviewer to critically reflect on his roles, potential biases, and experiences with study participants.

Data analysis

All interviews were audio-recorded and transcribed verbatim. All transcripts were reviewed for accuracy by study team members (WJF and XZ) and de-identified before analysis. Interviews conducted in Mandarin were translated into English by a certified translator. To ensure conceptual and cultural equivalence, two bilingual research team members (FWJ, XZ) independently reviewed the translated transcripts against the original Mandarin audio. Discrepancies were discussed and resolved through consensus to ensure conceptual accuracy.

The study employed reflexive thematic analysis following the six-step approach outlined by Braun and Clarke: familiarization with the data, generating codes, searching for themes, reviewing themes, defining and naming themes, and producing the report.¹⁹ Three qualitative trained study team members (DJ, WJF, and XZ) first immersed themselves in the data through repeated reading of transcripts, re-listening to audio recordings when needed, and writing reflexive memos and field notes. Each member conducted initial inductive line-by-line coding independently. Codes were then collated and grouped into broader candidate categories and iteratively developed into themes through regular team discussions and reflexive review with co-authors (JSMW, SY). Reflexive discussions were conducted among the team members to address interpretive differences and senior co-authors (JSMW, SY) provided additional conceptual input and helped refine theme boundaries. Themes were identified and refined until coherent and internally consistent definitions and names were agreed by the team. Throughout analysis, analytic decisions and researcher reflections were captured in a reflexive journal and meeting notes.

All data analysis was conducted using Atlas.ti.V for data management. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist, and methods and results were reviewed to ensure alignment with these standards as elaborated in Supplemental Table 4.²⁰

Results

We purposively approached 25 patients and 15 caregivers. Sampling and data collection proceeded iteratively and in parallel with analysis. All patients provided consent to participate, while two caregivers declined due to time constraints. We observed strong repetition in codes and no new interpretive insights after 23 patient and 12 caregiver interviews. To ensure data adequacy and representation of under-sampled cancer types, we conducted two additional patient interviews and one additional caregiver interview.^21,22 These final interviews reinforced, but did not alter, the existing analytic structure. Consistent with reflexive thematic analysis, we adopted a pragmatic approach to saturation.^22,23 After completing 35 interviews, the research team judged that the dataset held sufficient information power and conceptual depth to support a robust analysis.

The mean ages of patients and caregivers were 61 (range 35–74) and 47 (range 28–72) years, respectively. Most patients were female (72%), Chinese (76%) and had colorectal cancer (52%). Caregivers were primarily children (46.2%) and spouses (30.8%). Table 1 summarizes patient and caregiver demographics and clinical characteristics.

Table 1.

Participant characteristics.

Characteristics	Patient (N = 25)	Caregiver (N = 13)
Age (years)
Mean (SD)	61.3 (10.1)	47.0 (13.2)
Gender, N (%)
Female	18 (72.0)	8 (61.5)
Ethnicity, N (%)
Chinese	19 (76.0)	11 (84.6)
Malay	2 (8.0)	0 (0.0)
Indian	2 (8.0)	1 (7.7)
Others (Burmese, Eurasian)	2 (8.0)	1 (7.7)
Marital status, N (%)
Single	6 (24.0)	—
Married	11 (44.0)	—
Divorced/Widowed	6 (24.0)	—
Missing*	2 (8.0)	—
Relationship with patient, N (%)
Child	—	6 (46.2)
Spouse	—	4 (30.8)
Sibling	—	1 (7.7)
Others (Ex-spouse, grandchild)	—	2 (15.4)
Primary cancer
Colorectal	13 (52.0)	—
Gastric	2 (8.0)	—
Ovarian/gynecological	7 (28.0)	—
Others	3 (12.0)	—
Median overall survival: months (95% CI)	21.3 (6.2–35.4)	—

Unknown due to marital status not recorded in electronic health records.

Challenges and care gaps following palliative gastrointestinal surgery

Figure 1 illustrates four themes representing key challenges and perceived care gaps. The first two themes captured challenges related to gastrointestinal surgery and life-limiting advanced cancer diagnoses, while the remaining themes reflected perceived gaps in surgical care. Despite being distinct stakeholder groups, patients and caregivers described largely overlapping challenges and perceived care gaps. Apart from caregiving burden and financial concerns, perspectives were aligned, and themes are presented in an integrated manner.

Figure 1.

Key challenges and care gaps in surgical care among patients and caregivers following palliative gastrointestinal surgery.

Theme 1: Physical, emotional, & systemic challenges of living with a stoma after palliative gastrointestinal surgery

Daily life dictated by an unpredictable stoma

There were 15 (60%) patients who had newly created stomas following palliative gastrointestinal surgery. Many patients reported that having a stoma prevented them from being able to go out and have an active life outside of home. This especially impacted the psycho-social well-being of patients who used to have active and independent lives before the surgery:

I will say I try not to go out as much? It is very hard to change the stoma when you are in a public toilet. It stops me from going out as much as I want. Whenever I go out, the stoma bag fills up very quickly. (Patient P22, 50, F)

There is a lot of inconvenience. I won’t be going out easily with all these stoma bags with me, that is my biggest setback. I cannot go out and do my own shopping, and had to stay at home. (P8, 66, F)

Lifestyle adjustments were also common among caregivers who must now assist with regular stoma care:

She can walk around, except when the stoma is not working at night. In the middle of the night, I have to clean urine collected from the stoma bag. In the middle of night, I have to wake up to clear it [up] for her. (Caregiver CG8, 72, M)

Hypervigilance and emotional stress of managing a stoma

Beyond physical challenges, both patients and their caregivers experienced significant emotional distress, including heightened anxiety, stress, and frustration around stoma care:

It is a learning process; there are a lot of complications because of stoma. For me, sometimes when we change, it leaks. . . I have a phobia for this. (P9, 58, F)

Her stoma bag was leaking, and nobody could resolve it. Back then, it was very stressful, because every day the stoma bag was leaking. (CG10, 32, F)

Feeling abandoned by the medical system when there is nowhere to turn for stoma help

These psychological challenges were exacerbated by a lack of timely medical support when stoma care-related issues arose:

For example, after I left the hospital, the first time I started using [the stoma bag] at home, I got leakage. They gave me a number to reach out to. When I reached out to them, they kept telling us the same thing, [that they had] already showed us. We repeated the same thing, tried again and again, [but it was] still leaking . . . Then the nurses asked, ‘why don’t you call the vendor’. (P11, 50, F)

Watching a video and understanding everything was one thing, but actually seeing my mom with a stoma and taking care of it was quite different. At first, we faced trouble, we had no experience. (CG3, 34, M)

The hidden costs of survival: The ongoing financial strain of stoma care

The cost of maintaining a stoma extended far beyond routine medical expenses and became a persistent source of financial pressure. For many caregivers who were simultaneously coordinating care and footing medical bills, expenses accumulated quickly and relentlessly:

[I worry] whether I can cope with finance because expenses are very high per month. All these bags and material to maintain these [referring to the ostomy] are all very expensive. (P8, 66, F)

We spent a lot of money on this [referring to the ostomy care] because every time we change the stoma, it costs about SGD$30 (or USD 21.74^a). Can you imagine we [have to] change the stoma everyday, and everyday $30 down the drain? Private nurses are also quite expensive. (CG10, 32, F)

Theme 2: Emotional, existential, & relational challenges of living with advanced cancer

As patients undergoing palliative surgery are often near the end-of-life, with a median overall survival (from palliative surgery to death) of 21.3 months (range 6.2–35.4), many patients experienced challenges associated with living with life-limiting advanced cancer.

Carrying the weight of being a burden

Patients with advanced cancer often experience an internal tension between needing support and wanting to protect their loved ones from additional stress. Even in the presence of attentive caregivers, many were acutely aware of the time, effort, and emotional energy their care demanded, leading to feelings of guilt or self-consciousness.

At least with my husband around, I am at ease. It is just that I do not want to trouble him too much. I feel like I burden him sometimes. (P9, 58, F)

Living under the shadow of cancer relapse

The possibility of cancer recurrence or treatment failure was a persistent source of anxiety, influencing the patients’ sense of the future and their own mortality. Routine scans and follow-ups became emotionally charged events, and imagining the future often provoked uncertainty and existential reflection.

Now most of my [cancer] cells are kind of stable. I worry it will relapse, and also that current medication [chemotherapy] will lose its effects in the future. (P15, 35, F)

Helplessness in the face of inevitable decline

Caregivers frequently described a profound sense of helplessness when patients declined further interventions or expressed readiness for end-of-life care. Respecting patient autonomy often collided with the desire to act, resulting in emotional strain and feelings of inadequacy. This helplessness shaped caregiving strategies and showcases the relational challenges inherent in advanced cancer.

For my mom’s case, she has been very clear that she has no intention of being readmitted to the hospital. ‘As things progress, just help me by giving me morphine and if my time has come, just let me go.’ This is the heart-breaking portion. We are very helpless. She is our loved one and yet we can’t do anything. (CG6, 34, M)

Balancing caregiving and work responsibilities

Caregivers juggled multiple competing responsibilities, including work, household duties, and patient care, reflecting the multi-dimensional pressures of managing a family member with advanced cancer. This balancing act is a significant source of stress for many caregivers, exerting an adverse effect on their overall well-being.

Juggling my relationship with my wife, co-workers, superiors, and the ability to ensure that I am still competent when it comes to work matters. . . This may add some stress to myself, because of the need to ensure that things are proper. (CG6, 34, M)

Theme 3: Navigating uncertainty amid suboptimal surgical communication

Waiting in the dark: Delays and opacity in surgical communication

Delayed and fragmented communication between the surgical team, patients, and their caregivers was a source of confusion and emotional strain. Participants frequently described a sense of being left in limbo due to delayed, unclear, or incomplete communication from the surgical team. The lack of transparency left patients and caregivers feeling vulnerable, and they had to be dependent on their own efforts to obtain clarity.

Things like when I drop a message to the doctors and nurses, it takes a while to come back to me. Sometimes it doesn’t get routed back to me. (CG4, 40, F)

I feel that they [referring to the surgical team] are not very transparent about things with me. The information, they don’t give it to me straight away. (P14, 59, M)

Participants described having to interpret partial information, often accepting instructions without fully understanding the rationale or implications:

Sometimes these medical stuff, even if they [referring to surgical team] say we are also not clear, and don’t understand. Whatever they say, we just listen. (P10, 74, M)

Limited avenues for guidance beyond clinical encounters

Patients expressed that they lacked accessible channels for real-time guidance beyond their scheduled clinic appointments, which contributed to significant frustration with the medical system.

We do not have any information except during the doctor’s appointment. At the appointment, we [have to] ask them whatever questions we have, if not we do not have much information. (P8, 66, F)

Similarly, caregivers also emphasized the need for clearer guidance and accessible support channels:

Provide a hotline, [an] easily contactable one to help us, because we can be quite lost. We do not know who to consult. . . Let’s say someone [is] able to advise us on what to do to help with her pain, diet, and nutrition will be good. (CG13, 50, F)

Conflicting messages and inconsistent guidance

There were also discrepancies in the medical information provided by the various members of the surgical team. This caused confusion, reduced trust, and complicated decision-making.

I asked the doctors if all the ovaries were taken out. [Doctor’s name] told me in a private conversation that all were taken out, but the people [referring other members of the surgical team] told my grandmother there was still one left. (CG1, 28, F)

Unpreparedness for the realities of post-surgical care

Finally, caregivers also expressed that they lacked anticipatory guidance about the nuances of post-surgical care. For instance, stoma care needs were often not emphasized before surgery, leaving patients and their caregivers unprepared for the high physical and emotional demands post-surgery.

He [referring to the patient] may not know about the day-to-day handling of stoma. This was not well communicated. We don’t know that he has to do it six times a day. As you go through chemotherapy, you get weaker and weaker, and it is more taxing for him. (CG11, 45, F)

Theme 4: Emotional and relational strain from lack of compassionate surgical care

Feeling unseen and unheard

Brief, perfunctory interactions with the surgical team left patients and their caregivers feeling invisible and unsupported.

Sometimes when we talk to the doctors, they will just use one word or a few sentences to pacify us. Sometimes we just need someone to listen to us and pay attention to our complaints and questions regarding our condition. We are not heard properly. I feel that doctors should at least give some words of encouragement and provide some advice on how to deal with the problems. (P23, 59, F)

Perceived lack of sincerity

Dismissive or evasive interactions with members of the surgical team further undermined trust and amplified emotional distress.

When I questioned [doctor’s name], she was very evasive about it. . . The way she handled it, it was dismissive, her words, her attitude. . . I could not sense the sincerity of wanting to help us. (CG10, 32, F)

The themes and subthemes with patient and caregiver quotes are detailed in Supplemental Table 2.

Coping mechanisms following palliative gastrointestinal surgery

Figure 2 illustrates the commonly adopted coping mechanism adopted by patients and their caregivers.

Figure 2.

Coping mechanisms of patients and caregivers following palliative gastrointestinal surgery.

Coping mechanism 1: Using emotion to cope with changes (emotion-focused)

Patients and caregivers described drawing on emotional anchors, particularly family support, to stabilize themselves amid the unpredictability of postoperative recovery:

I spent my time with my family and that helped me through all the treatment. They reassured me and told me that it is going to be alright, we will go through this together. (P14, 59, M)

I have a very understanding wife. My wife is also working. She also has to juggle household chores, taking care of my mom, the kids and everything. The good thing is she is very understanding and supportive, and very helpful. . . (CG6, 34, M)

Optimism and maintaining a positive mindset were also important coping strategies:

I am very optimistic, and I feel that that is important. When people think about cancer, they think of it as a death sentence. So being optimistic is important. (P22, 50, F)

Coping mechanism 2: Creating meaning and purpose (meaning-focused)

Many patients described shifting how they made sense of their situation, drawing on faith and gratitude to maintain psychological wellbeing. This meaning-making was not passive acceptance but an active attempt to preserve agency in the face of existential threat.

I also thank my religion. I am a Christian. I prayed a lot about it, and I am encouraged by it. I trust that everything is in God’s plan. (P22, 50, F)

Of course, faith is a big part of how I managed to go through this period. (CG2, 61, F)

Caregivers often find meaning and purpose in caregiving. Instead of viewing caregiving as a burden which could lead to emotional distress, caregivers found deep values and personal growth through re-interpretation of the challenge faced, sustaining their psychological well-being:

[The patient] is my mom, why would she be a burden? To me, [my mom] can take care of the three of us, so in what way should we find her a burden? I don’t think having that kind of thinking is healthy. To me, it’s a time to repay whatever our parents have done and it’s only necessary for us to do what we can to pay them. (CG6, 34, M)

Coping mechanism 3: Taking practical steps to navigate uncertainty (problem-focused)

Delegating trust and decision-making to the surgical team played a crucial role in helping patients and their caregivers navigate uncertainties surrounding palliative surgery. By entrusting complex surgical decisions to their surgeons, it alleviated personal fears and anxieties:

As patients we have to entrust the doctors, what other choice do we have? We can only entrust them. (P24, 71, F)

We don’t know if it is good or bad for him [referring to the patient], so our take is that as long as it is good for him by the doctors, I say go ahead. . . I just trust the doctors. (CG2, 61, F)

Taking a proactive approach towards solving potential financial problems that could arise following surgery also provided reassurance. These strategies included mobilizing financial resources through subsidies and medical insurance:

One thing that really helps is the subsidy because it is costly. I talked to the medical social worker to get a subsidy. (P5, 55, M)

She [referring to patient] is claiming insurance, so it is alright. We prepared all the things and have a few months of supply [referring to stoma accessories]. (CG9, 62, M)

Finally, adopting a problem-solving approach in ostomy and home care after surgery optimized caregiving. Through iterative solution-driven strategies described, caregivers took a proactive approach to improve patient care:

It’s not that I am praising my husband, but my husband is the one who analyzed it [referring to stoma], like what causes this leak. Each time when he changes it, he looks at the stoma stain, and he says: I think this is the part that always causes leakage, and [this is] what we must do. (P9, 58, F)

Coping mechanism 4: Avoiding distress (avoidance-focused)

Avoidance-focused coping emerged when patients appraised their circumstances as too emotionally or practically taxing to confront head-on. They coped by suppressing distressing thoughts to avoid emotional tolls:

Normally I try to just not think about it [referring to going through surgery] too much. The more I think about it, the sadder I become. Just push it aside, it does not help to think about it too much. (P8, 66, F)

Others coped via self-distraction through work and keeping busy:

I am grateful that I am still working. I have good colleagues that help me through this period, and I have work to help occupy my mind. If you don’t work, then you will start to think of negative things. (P9, 58, F)

The themes and subthemes on coping mechanisms with patient and caregiver quotes are detailed in Supplemental Table 3.

Discussion

Overall, findings from our study revealed the complex challenges, care gaps, and coping mechanisms experienced by patients with advanced cancer and their caregivers following palliative gastrointestinal surgery. Key challenges include physical, emotional, and systemic difficulties related to living with a stoma, alongside emotional, existential, and relational challenges associated with advanced cancer. Gaps in surgical care delivery were also identified. They include suboptimal communication and a perceived lack of compassionate surgical care. In response, patients and caregivers employed various coping strategies, including emotion-, meaning-, problem-, or avoidance-focused mechanisms.

Stoma-related challenges are well-documented in patients undergoing gastrointestinal surgery, with prior studies reporting persistent issues including physical limitations, lifestyle changes, negative emotions, social isolation, and a decrease in health-related quality of life.^24–29 Our findings align well with previous literature on stoma-related challenges, but also highlight the added complexity and multi-faceted nature of these challenges in the context of palliative care, where patients face the additional burden of life-limiting advanced cancer diagnoses. Specifically, stomas created in the palliative setting are often associated with higher complication rates due to factors such as poor nutritional status, chemotherapy, and disease progression.³⁰ Furthermore, as patients are near the end of life, they often become increasingly dependent on caregivers for stoma management.³¹ This growing reliance can intensify caregiver burden, as caregivers in our study reported to experience difficulty balancing the practical demands of caregiving while feeling helpless in the face of the patient’s declining condition. These challenges collectively point to the need for coordinated and comprehensive support from multidisciplinary teams and their understanding of the unique needs of patients and caregivers in this setting.

Our study highlights significant gaps in surgical care, particularly in the areas of communication and compassion. Effective communication in cancer care directly influences patient satisfaction, adherence to treatment plans, and the ability to manage complex symptoms and decision-making throughout the disease trajectory.^32–34 In surgical settings, where patients often face high-stakes decisions involving risks and uncertain prognoses, clear and compassionate communication is especially crucial.^35–38 The “fix-it” model, often used by surgeons to frame surgery as a way to correct a medical problem, may contribute to these gaps identified in surgical communication.³⁹ While this approach can facilitate patient understanding of their disease, it shifts focus away from broader discussions about goals, values, and quality of life, which are especially important in the context of serious illness.^40–44 Schwarze et al. also emphasized the need for surgeons to move beyond this model and reframe their approach to communication, promoting more transparent and goal-concordant discussions.^43,45–47 To address these care gaps, it is thus essential to prioritize palliative surgical education and communication training that equips surgeons with the skills to address not only procedural decisions but also to deliver compassionate patient-centered care.^48,49

Patients with advanced cancer cope in a variety of ways,⁵⁰ and in the context of palliative gastrointestinal surgery, most patients in our study demonstrated adaptive coping mechanisms, including accepting their situation and seeking support.⁵¹ However, some adopted avoidance-based strategies such as suppressing worries or distracting themselves from the reality of the situation. While such coping mechanisms may provide short-term emotional relief, they can reinforce emotional distress over time and reduce meaningful engagement with life.⁵² Coping responses are influenced by an interplay of personal, psychosocial, and contextual factors. Lazarus and Folkman’s transactional model of stress and coping offers a useful lens for understanding these dynamics: individuals first appraise the demands of their situation (primary appraisal) and then evaluate their ability to manage them (secondary appraisal).⁵³ In our study, when participants encountered challenges such as uncertainty related to stoma care, existential distress associated with advanced cancer, and suboptimal surgical communication, these stressors were appraised as uncontrollable, reducing their sense of control and capability. These difficulties often reflected deeper contextual issues, including the quality of surgeon-patient communication, the structure of care pathways, and access to support services. When patients and caregivers encountered inconsistent information, limited access to guidance, or dismissive interactions, many appraised their situation as unpredictable or uncontrollable: conditions that constrained problem-focused coping and reinforced reliance on emotion-focused or avoidance-oriented strategies. Conversely, clear information, anticipatory guidance, and compassionate engagement enabled more proactive, problem-focused coping. These findings highlight that coping is not solely an individual process but is shaped by the relational and structural dimensions of surgical care. Inadequate communication in the perioperative period may further amplify distress, especially when expectations about pain, recovery, or future treatments are unclear.⁵⁴

Postoperatively, patients may face uncertainty about burdens such as financial stress, loss of function, and caregiving responsibilities,⁵⁵ which were similarly reflected in our study findings. As such, surgeons are well-positioned not only to initiate goals of care conversations but also to recognize signs of distress that may hinder effective coping. Integrating routine screening for psychosocial distress and timely referral to support services should become a part of surgical care, as targeted interventions for those at risk of poor coping can ease emotional burden, support decision-making, and improve outcomes and quality of life.^56–59

While participants often associate communication gaps and lack of compassion with the surgical team, it is also important to recognize that these domains of care are influenced by multiple professionals across the perioperative pathway.^60,61 These varying experiences described by participants may therefore reflect system-level fragmentation rather than shortcomings of the surgical team alone. Hence, strengthening interprofessional collaboration through shared messaging across disciplines, clearer role delineation, and regular multidisciplinary discussions can help address these care gaps identified by patients and caregivers. Such a multidisciplinary approach is particularly crucial in the palliative surgical context,⁶² where the complexity of patients’ needs requires coordinated, compassionate, and collaborative care.^60,62,63

Our study explores the experiences of patients with advanced cancer undergoing palliative gastrointestinal surgery, as well as the perspectives of their caregivers, offering insights into their postoperative challenges, unmet care needs, and coping mechanisms. However, our study has some limitations. Firstly, as this study was conducted in a single Asian tertiary cancer center in Singapore with a predominantly Chinese population, the findings may not be fully applicable to all patients undergoing palliative gastrointestinal surgery. Differences in cultural beliefs, healthcare systems, and patient–clinician dynamics across regions may influence how patients and caregivers experience, communicate, and cope with their surgery. The sociocultural context of Singapore: where interactions between patients and clinicians are shaped by Asian cultural norms of high trust in medical authority, deference to clinicians, and cultural tendencies to avoid direct confrontation, may have influenced how patients and caregivers perceived and reported care gaps.^64,65 These norms may lead patients to under-express dissatisfaction or assume that limited communication is expected.⁶⁵ Consequently, the care needs and coping mechanisms identified may not generalize to settings where patient–clinician communication is more egalitarian. Secondly, patient-caregiver dyads were not matched in this study, which limited our ability to explore the shared aspects of challenges and coping within caregiving relationships. Additionally, interviews conducted 4–8 weeks post-surgery primarily capture short-term challenges and coping responses during early recovery. Longer-term issues, such as disease progression, evolving emotional needs, or changes in caregiver dynamics, bereavement, and grief issues were not fully represented.

Conclusion

Patients and their caregivers experience layered physical, emotional, and existential challenges following palliative gastrointestinal surgery. These are exacerbated by gaps in communication and compassionate surgical care. Although adaptive coping strategies have been employed, there remains an urgent need for targeted patient- and caregiver-centred interventions to elevate the quality of palliative surgical care for individuals living with life-limiting cancer.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524261425678 – Supplemental material for Challenges, care gaps, and coping mechanisms in patients with advanced cancer and their caregivers following palliative gastrointestinal surgery

Supplemental material, sj-docx-1-pcr-10.1177_26323524261425678 for Challenges, care gaps, and coping mechanisms in patients with advanced cancer and their caregivers following palliative gastrointestinal surgery by Xiaofan Zhong, Wei Jing Fong, Darryl Juan, Mingzhe Cai, Jane Chin Jin Seo, Johnny Chin-Ann Ong, Claramae Chia, Jolene Si Min Wong and Sungwon Yoon in Palliative Care and Social Practice

Footnotes

Acknowledgements

The authors would like to thank Dr. Casuarine Xinyi Low for her valuable insights and feedback during the development of this manuscript.

ORCID iDs

Jolene Si Min Wong

Sungwon Yoon

Ethical considerations

The study was approved by the SingHealth Centralized Institutional Review Board (CIRB No : 2021/2455).

Consent to participate

Written informed consent to participate was obtained from all individual participants included in the study.

Consent for publication

Informed consent for publication was provided by the participants.

Author contributions

Xiaofan Zhong: Conceptualization; Data curation; Formal analysis; Methodology; Writing – original draft; Writing – review & editing.

Wei Jing Fong: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Visualization; Writing – original draft; Writing – review & editing.

Darryl Juan: Conceptualization; Data curation; Methodology; Writing – review & editing.

Mingzhe Cai: Conceptualization; Investigation; Writing – review & editing.

Jane Chin Jin Seo: Conceptualization; Investigation; Writing – review & editing.

Johnny Chin-Ann Ong: Conceptualization; Investigation; Writing – review & editing.

Claramae Chia: Conceptualization; Investigation; Writing – review & editing.

Jolene Si Min Wong: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Supervision; Validation; Visualization; Writing – original draft; Writing – review & editing.

Sungwon Yoon: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Supervision; Validation; Visualization; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is supported by the National Medical Research Council (NMRC) through the SingHealth PULSES II Centre Grant (CGFeb24S12). All the funding sources had no role in the study design, data interpretation or writing of the manuscript.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Deidentified data is available upon request.

Supplemental material

Supplemental material for this article is available online.

Notes

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