Colorectal cancer is the third most frequently diagnosed malignancy and the second most common cause of death from cancer worldwide, with nearly 1.93 million new cases and approximately 904,000 deaths in 2022. Projections point to a further substantial rise by 2050, driven by demographic and lifestyle changes [1, 2]. Stage migration toward earlier detection, combined with advances in minimally invasive and function-preserving surgery, optimized neoadjuvant regimens, and more effective systemic therapy, has yielded five-year relative survival rates exceeding 65% in many high-income settings and above 90% for localized disease [1, 3]. The consequence is a rapidly expanding population of long-term survivors who live for years or decades with the functional and psychosocial consequences of their treatment [4].

These consequences rarely remain confined to the patient. Chronic bowel dysfunction, stoma dependence, urogenital and sexual sequelae, persistent fatigue, fear of recurrence, and financial strain reshape daily life for the household, and partners, adult children, and parents take on informal caregiving roles that may extend for years [5]. Informal caregivers in cancer absorb a well-documented load of practical, emotional, and economic tasks, and their mental and physical health is both an ethical concern and a determinant of patient outcomes [6, 7]. In colorectal cancer specifically, the stigma and intimate nature of bowel and stoma symptoms give the family burden a distinctive profile that remains poorly characterized in clinical practice [8, 9].

The aims of this narrative review are (1) to summarize current knowledge about the impact of chronic colorectal cancer sequelae on family members, including the psychological, relational, practical, and financial challenges experienced by family members; (2) to identify protective factors, review supportive interventions, and propose implications for family-centered survivorship care.

While the psychosocial burden on cancer caregivers has been extensively documented across oncology more broadly, colorectal cancer presents a distinctive combination of chronic sequelae, including bowel dysfunction, stoma dependence, and sexual and urogenital dysfunction, whose intimate and often stigmatized nature likely shapes family life differently than in other cancer types. However, most existing caregiver evidence is either extrapolated from populations combining multiple cancer types or focused on the patient’s own outcomes rather than the family’s experience. This review brings together, for the first time in a single narrative synthesis, the literature on sequelae specific to colorectal cancer and the family and caregiver burden literature, to make this gap and its clinical implications explicit.

This narrative review is based on a non-systematic search of the literature, primarily using PubMed and Google Scholar. The reference lists of all included studies and relevant review articles were manually screened to identify further potentially eligible studies. Searches combined terms related to colorectal cancer, survivorship, caregiver burden, family members, and the specific sequelae discussed in this review (e.g., low anterior resection syndrome (LARS), stoma, sexual dysfunction, and fear of recurrence). Searches were limited to papers published after 2010, and there were no language restrictions. Given the broad and multidisciplinary scope of the topic, articles were selected based on relevance to the aims of the review rather than through a predefined systematic protocol. Priority was given to recent systematic reviews, meta-analyses, and large cohort or registry studies where available. Studies were prioritized for inclusion when they reported outcomes specific to colorectal cancer populations; where such evidence was unavailable, studies drawing on mixed cancer populations were included and are identified as such in the text. Given the narrative, non-systematic nature of this review, formal screening using predefined eligibility criteria and multiple independent reviewers was not undertaken; article selection instead relied on the authors’ clinical and topical expertise to align sources with the aims of this review.

Understanding the family burden requires a clear view of the patient’s experience after curative treatment. Table 1 summarizes the main categories of chronic sequelae and their family-level impact.

The following sections examine each of these sequelae in more detail, beginning with the most prevalent: bowel dysfunction and LARS.

The dimensions of caregiver burden in colorectal cancer survivorship are summarized in Table 2.

Each of these domains is examined in turn below, beginning with the psychological burden of depression, anxiety, and psychiatric morbidity.

Caregiving for a colorectal cancer survivor with chronic sequelae is a demanding, sustained activity. Tasks range from stoma care, wound management, and medication administration to dietary planning, appointment logistics, and emotional support [6, 40, 49]. The intensity of tasks, the patient’s level of dependence, and the caregiver’s own health status together drive subjective burden [6, 40, 49].

The occupational and economic consequences are substantial. A cross-sectional study of informal caregivers of individuals with colorectal cancer found high financial toxicity in nearly half of respondents, independently associated with household income, insurance status, perceived stress, and social support [42]. However, as this finding derives from a cross-sectional design, it cannot establish whether financial toxicity precedes or follows psychological and social strain, limiting causal interpretation [42]. Qualitative accounts describe caregivers commonly making substantial occupational adjustments, ranging from negotiating leave and reduced hours to resignation or early retirement, with several caregivers describing these changes as involuntary and accompanied by a sense of loss [43]. Financial toxicity is not simply an economic problem; it correlates with treatment adherence, mental health, and self-care in both members of the dyad [42, 44].

A practical implication for surgical and oncological teams is that socioeconomic vulnerability is a risk factor for poor family outcomes and should be proactively elicited during pretreatment counselling. Figure 1 illustrates the proposed pathways from treatment-related chronic sequelae to caregiver and dyadic outcomes, operating through modifiable protective factors and moderated by socioeconomic, relational, and health-system factors, with a bidirectional relationship between caregiver distress and patient adaptation.

Burden is not deterministic. Family resilience, defined as the family’s capacity to adapt through shared meaning-making, flexible roles, and supportive communication, is associated with lower caregiver burden and better dyadic adjustment in colorectal cancer [39, 50]. At the individual level, coping flexibility, an internal locus of control, realistic expectations, and perceived social support buffer caregivers against depressive symptoms [51, 52]. Sense of coherence, an individual’s confidence in understanding, managing, and finding meaning in stressors, has similarly been identified as a modifiable protective factor, with lower sense of coherence predicting membership in high-burden caregiver trajectories [47]. At the patient level, self-efficacy in managing bowel symptoms and stoma care reduces spill-over distress for the caregiver [34, 39].

Health literacy is another modifiable protective factor. Among cancer caregivers, more broadly, higher caregiver health literacy is associated with better psychological outcomes for patients, suggesting that information- and skills-transfer interventions have value for the whole dyad [53]. For the surgical and oncological team, this means a clear obligation: not only to communicate with patients, but to ensure that family members have understood the information and know how to act on it.

Table 3 summarizes current intervention categories and their evidence base.

The evidence for each intervention category is discussed in more detail below, beginning with dyadic and couple-based approaches.

Based on the evidence reviewed, several considerations may be relevant for clinical practice. First, including the family as part of pretreatment counselling, with realistic discussion of expected chronic sequelae such as LARS, sexual dysfunction, fatigue, and fear of recurrence, may help set expectations for both patient and partner [21]. Second, given the documented burden of psychological distress and financial toxicity among caregivers, screening with brief, validated tools, such as the Distress Thermometer or the Zarit Burden Interview, during follow-up could be considered to identify families in need of support [28, 34]. Third, clear referral pathways to psycho-oncology, stoma care specialists, sexologists, social workers, and peer-support programs may facilitate access to relevant support for affected families. Fourth, socioeconomic vulnerability and caregiver health literacy appear to be relevant factors that could inform which families may benefit from closer follow-up [53]. Finally, extending the scope of multidisciplinary team meetings to include survivorship issues, supported by structured communication templates, could be a way to ensure these topics are not overlooked [62].

Figure 2 presents a pragmatic family-centered survivorship care pathway anchored in the surgical and oncological team, organized across four phases from the perioperative period to long-term follow-up, with explicit caregiver-focused actions at each phase.

The evidence reviewed varies substantially in methodological strength: population-based registry data on caregiver psychiatric morbidity are robust and longitudinal, whereas most colorectal cancer-specific findings on caregiver burden, dyadic distress, and intervention efficacy rely on smaller, cross-sectional, or single-country samples with short follow-up. This imbalance, together with the frequent reliance on evidence extrapolated from mixed-cancer populations, shapes the priorities outlined below.

Despite considerable progress, important gaps remain. First, longitudinal caregiver cohorts specific to colorectal cancer are still scarce, and most data are extrapolated from mixed-cancer studies. Second, male caregivers, minority and migrant families, single survivors without cohabiting caregivers, and sibling or adult-child caregivers are systematically underrepresented. While a substantial body of literature addresses children’s and adolescents’ psychological adjustment to parental cancer broadly, evidence specific to children of colorectal cancer patients is lacking, and existing findings are extrapolated from mixed-cancer populations. Similarly, caregiver burden within multigenerational households and across diverse cultural settings remains underexplored. Third, high-quality randomized trials of family-centered interventions with durable endpoints and economic evaluation remain limited in colorectal cancer [54, 55]. Fourth, the digital revolution in cancer care, encompassing remote monitoring, AI-assisted symptom tracking, and online peer communities, creates opportunities for families but also risks of digital exclusion and information overload that warrant explicit study [46, 60]. Finally, there is a need for robust, culturally sensitive instruments to capture family-level outcomes beyond individual questionnaires, including dyadic and systemic measures [39, 41]. This gap mirrors a broader pattern in colorectal cancer survivorship research more generally, where even patient-reported outcome measures have been shown to under-capture psychosocial constructs such as fear of recurrence, financial strain, and social reintegration [63].

Nordic health systems, with universal coverage, population-based registries, and mature survivorship research infrastructure, are uniquely positioned to generate such evidence, linking surgical, oncological, prescription, and sociodemographic data across patients and cohabiting relatives [28, 32, 33, 41].

This review has several limitations inherent to its narrative design. The non-systematic literature search means relevant studies may have been overlooked, and selection bias cannot be excluded. As detailed above, much of the evidence is drawn from mixed-cancer populations, limiting direct transferability. As with any narrative review, interpretation bias is a risk, since the synthesis reflects the authors’ judgment in weighting and selecting evidence. Finally, the available literature on caregiver burden in colorectal cancer is still limited, and conclusions should be interpreted with caution pending more and higher-quality evidence in this specific population.

Improvements in colorectal cancer survival have created a new clinical reality in which the long-term outcomes of treatment are experienced by both the patient and the family. Chronic bowel, urogenital, sexual, and emotional sequelae translate into measurable psychological morbidity, dyadic distress, occupational disruption, and financial strain for caregivers. The evidence base now includes robust registry data documenting excess psychiatric risk among spouses of cancer patients, longitudinal cohort data characterizing caregiver burden trajectories in colorectal cancer, and an emerging but modest portfolio of dyadic and family-centered interventions. Surgical and oncological teams are well positioned, and arguably obliged, to move the family from the periphery to the center of survivorship care. In practice, this means structured pretreatment counselling, routine caregiver screening with validated tools, and clear referral pathways to psycho-oncology and stoma care specialists. Research priorities include longitudinal, colorectal cancer-specific caregiver cohorts capturing underrepresented groups, adequately powered randomized trials of family-centered interventions, and validated family-level outcome measures.