Facilitators and barriers to survivorship support access: a qualitative study of rectal cancer survivors’ experiences in Texas

Abstract

Objective

This qualitative study aimed to analyse rectal cancer survivors’ lived experiences to identify facilitators and barriers to support access.

Design

We conducted one-on-one semi-structured interviews and employed thematic analysis to identify key themes and insights.

Setting/participants

Participants included eight rectal cancer survivors and three caregivers recruited at Texas Colorectal Collaborative sites.

Results

Results showed that adequate hospital resources, high health literacy and close connections with clinicians and peers who share similar experiences facilitate survivors’ access to social support. Conversely, ineffective healthcare team communication, financial challenges and low self-motivation hindered access.

Conclusion

Survivorship experiences were shaped by varying degrees of social support access, influenced by internal and external factors. We aim to establish a cross-institutional survivorship support network to address these factors, ensuring equitable access to support services and enhancing survivorship experiences.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Semi-structured interviews provided deep insights into survivors’ experiences, support access and unmet needs.

• Thematic analysis identified key themes through an iterative and holistic coding process.

• Results are specific to rectal cancer survivors at Texas Colorectal Collaborative sites and may not be universally applicable to all patients undergoing rectal cancer treatment.

• Given the substantial impact of the COVID-19 pandemic on healthcare facilities in 2021, where most survivors underwent treatment, reported experiences may not precisely reflect the broader population’s experiences.

Introduction

Colorectal cancer (CRC), which consists of both colon and rectal cancer, ranks as the third most common cancer diagnosed worldwide¹ and in the United States.² Of the estimated 152,810 new CRC cases in 2024, 46,220 were rectal cancer cases, with 27,330 in men and 18,890 in women.² From 1975 to 2022, both incidence and death rates for rectal cancer have declined, and the 5-year survival rate has improved.² Data between 2012 and 2018 indicate that individuals diagnosed with rectal cancer were, on average, 67% as likely as those without cancer to survive at least 5 years post-diagnosis.^{3 4}

While effective treatment has led to a growing population of rectal cancer survivors, it has also significantly impacted survivors’ mental and physical health, as well as their overall quality of life.5,8 Studies have shown that a vast majority of patients with rectal cancer experience at least one ongoing problem, with many reporting unmet treatment-related needs.⁶ These often include bowel and bladder dysfunction, stoma management and sexual dysfunction.⁶ Research has further highlighted that survivors face persistent challenges long after treatment completion, such as ongoing gastrointestinal symptoms, functional impairments and the need to adjust to a new normal.^{9 10} Other common issues among survivors include increased fatigue, nausea/vomiting, appetite loss and diarrhoea.⁸ Long-term survivors, especially those diagnosed at a younger age, often experience heightened anxiety, body image issues, embarrassment with bowel movements and restrictions in role, social, emotional and cognitive functioning.¹¹ These multifaceted challenges threaten survivors’ quality of life and generate needs for information, emotional support, relationship assistance, financial aid and logistical help.^{6 12}

These challenges and needs are shared by survivors globally.^{13 14} Recent research in the UK, involving semi-structured interviews with patients with rectal cancer, echoed previous findings on physical challenges and emphasised the psycho-emotional impact of treatments.¹⁴ This study revealed that survivors experienced intense emotions, including fear, anxiety, depression, isolation and even suicidal thoughts throughout their treatment, highlighting the need for comprehensive support addressing psychological, emotional and physical challenges.¹⁴ Similarly, a longitudinal quantitative study among CRC survivors in China identified predictors of psychological distress such as fear of cancer recurrence, anxiety, pain, fatigue and treatment side effects.¹³ Researchers proposed a multidisciplinary support system involving various healthcare professionals to continuously assess and manage psychological distress.¹³

While research has identified the adverse effects, challenges and unmet needs of rectal cancer survivors and has called for comprehensive support networks, there remains a need for specific guidelines on developing such networks and identifying essential factors affecting survivors’ access to and use of support resources. Quantitative studies suggest that individual-level factors such as health literacy, income level, employment status, education level, racial/ethnic background and cancer history lead to disparities in access to support for survivors.^{7 15 16} However, scarce evidence has explored interpersonal-level factors and system-level factors influencing the access of support services. To address the gap, this study aims to examine rectal cancer survivors and caregivers’ experiences in navigating and using support resources as an exploratory pilot study of people treated at academic centres in Texas. Our rationale for this pilot study is to obtain a preliminary understanding of rectal cancer survivors and caregivers’ needs due to the dearth of data to date in Texas. This approach will contribute to a more comprehensive understanding of facilitators and barriers in their journey to obtain essential support resources. Through in-depth interviews, this study could uncover nuanced aspects of survivors’ support networks at multiple levels that quantitative studies might have overlooked, providing valuable insights for developing more effective, patient-centred survivorship support systems.

Methods

Design

Through semi-structured qualitative interviews with survivors and caregivers, we aim to develop an understanding of the experiences, expectations, perceptions and needs of rectal cancer survivors throughout the diagnosis, treatment and survivorship.

Data collection

Eligibility and recruitment

Rectal cancer survivors who had completed rectal cancer treatment at any of the Texas Colorectal Collaborative sites (UT MD Anderson Cancer Center, UT HSC San Antonio, UT Austin Dell Medical School and Baylor University Medical Center) and their caregivers, who were 18 years or older, proficient in English, were eligible for the study. Participants who did not speak English or were cognitively or physically unable to complete an interview were excluded from our study.

As a pilot study, we aim to identify key themes and inform larger, subsequent studies. Initially, we anticipated recruiting 16 participants from five sites throughout Texas. This sample size was chosen based on the guidance from qualitative research literature, which suggests that saturation often occurs within a range of 6–16 interviews for homogeneous groups.¹⁷ However, due to regulatory and logistical constraints, three of the five sites were unable to provide any participants. Despite this limitation, we proceeded with the study by recruiting from the two remaining sites and were able to reach thematic saturation with the available cohort.

JI and AF, both male surgeons and health services researchers, initiated communication with survivors for whom they had performed the procedures to introduce our study and its objectives. They assured survivors that participation was entirely voluntary. The contact information of survivors expressing interest was then forwarded to the research staff, QC, who proceeded to contact survivors via email to provide additional details and confirm their interest. On completion of the consent process facilitated through DocuSign, survivors were provided with a link to engage in an initial survey designed to collect demographic information for the study. Towards the conclusion of the survey, participants were prompted to express their willingness to partake in a study interview and indicate whether their caregivers were also amenable to participating in a separate interview. The participants were compensated US$20 for completing the survey and US$20 for the qualitative interview.

Interview

An interview guide (see online supplemental file 1) was informed by the original interview guide and the findings of a prior qualitative research of rectal cancer survivors conducted by JI^{5 18} and further refined by JI and QC through an iterative process. The questions were organised into four categories: (1) illness experience and survivorship, (2) supportive care services, (3) communication about cancer and survivorship issues and (4) survivorship social network. From March to September 2022, the interviews were scheduled and conducted via Zoom by QC. The interviews lasted an average of 55 min (range: 34–79) and were recorded and transcribed through Zoom. XY reviewed the transcripts for accuracy using the original recordings.

Data analysis

Qualitative data were analysed using thematic analysis, facilitated by the software package QDA Miner Lite. The data coding approach was inductive, with codes and themes development being directed by the content of the data, rather than theoretically driven.¹⁹ Following the six-phase process of thematic analysis,¹⁹ XY began with a process of data familiarisation, in which XY noted initial analytical observations about each data item and the entire dataset by reading the transcription and memos. XY then coded two transcriptions to generate the initial codes and developed the first version codebook with columns of code category, code name, definition, eligibility and example based on the initial codes. XY coded the other four interviews and revised the codebook accordingly by adding new codes, refining code’s eligibility criteria and adding second-level codes to group the existing codes. After the codebook was finalised with all interviews, XY organised the data into a matrix with cases in rows and second-level codes in columns in an Excel file. XY searched for themes by reading and identifying the similarity in data across cases in the matrix. After generating the themes by identifying the pattern, XY reviewed the themes and gave definitions and names to the themes. Key themes were discussed with JI and QC to ensure appropriateness and accuracy. The last phase was to move from semantic description to interpret the significance of patterns and their broader meaning and implications for the final report.

Patient involvement

Survivors were not involved in the design, implementation or reporting of this study, but they were involved in the dissemination of the study information, which led to the successful recruitment of three caregivers.

Results

Participant characteristics

Eight survivors completed the demographic questionnaire and participated in the interview (see table 1). Three of these patients invited their caregivers to the interviews, resulting in a total of 11 interviewees. Caregivers were not asked to complete the survey.

Table 1. Demographics of survey respondents (n=8).

	n (%)
Age (mean±SD, years)	57.9±12.5
Gender
Woman	4 (50)
Man	4 (50)
Race, ethnicity
Caucasian	7 (87.5)
Hispanic or Latino/a	1 (12.5)
Education
High school or general educational development (GED)	2 (25)
Some college or 2 year degree	1 (12.5)
4-year college graduate	1 (12.5)
More than 4-year college degree	4 (50)
Years of survivorship
1 year	7 (87.5)
2 years	0 (0)
3 years	1 (12.5)
Cancer stage
Stage II	2 (25)
Stage III	5 (62.5)
Stage IV	1 (12.5)
Radiation therapy (yes)	5 (62.5)
Chemotherapy (yes)	6 (75)
Surgery (yes)	7 (87.5)
Have had an ostomy (yes)	6 (75)
Currently have an ostomy (yes)	3 (37.5)
Mental health condition (yes)	3 (37.5)
Number of close friends and relatives that they can talk to about their cancer	8.6±7.0

Among the eight survivors, four were female, and six were in their early 60s or younger, with the youngest being in their early 30s and the oldest being in their late 70s. Seven patients identified as Caucasian, while one identified as Hispanic or Latino. All patients had a high school degree or higher, and six had college and/or advanced degrees. Regarding cancer-specific characteristics, patients had an average survivorship experience of 1.25 years. Among them, two patients were diagnosed at stage II, five at stage III and one at stage IV. In terms of treatment modalities, five patients underwent radiation therapy, six received chemotherapy and seven underwent surgery. Among the participants, six had an ostomy, with three of them still having it at the time of the interview. Additionally, three patients received a diagnosis of a mental health condition. On average, patients shared their cancer journey with approximately eight close friends and relatives, with the range spanning from 1 to 24.

Qualitative results

Examining the facilitators and barriers affecting access to social support services for rectal cancer survivors provides valuable insights into the experiences of individuals navigating post-treatment care. Through the qualitative analysis of in-depth interviews with rectal cancer survivors, several key factors emerged as facilitators or barriers to accessing social support (see figure 1 and table 2). Facilitators included the presence of adequate hospital resources, a high level of health literacy among survivors, the inclusion of healthcare providers within close social networks and the availability of family members or friends who shared a similar diagnosis. Conversely, barriers were identified as the lack of effective communication from the healthcare team, financial challenges and low levels of motivation among survivors.

Figure 1. Major emerging themes.

Table 2. Representative Quotes.

Theme	Codes	Representative quotes	Participant no
Facilitators	Adequate hospital resources	It's like, 'Well, you need a nutritionist. Someone's going to call you to offer that… You need all these things. We take care of all of it, and they are going to contact you just to set up the visit.' From there, everything was coordinated. That was important, because knowing that okay, you don't have to call around for all of this, you don't have the urgency to do all these contacts. So that was awesome.	PT11
	High health literacy level	I do a lot of research on my own on the computer…he'll (doctor) give me a lot of articles to read, because he knows that I'm professor and that I do that stuff and read articles and they'll say I thought about you when I saw this so here read this.	PT03
	Having healthcare professionals in close social network	I already have doctors, I have a lot, you know from 60 years old I've already had my wife knows people, and all my doctors, like my cardiologist my urologist they're all there in the network, so it's all convenient for me.	PT03
	Having family or friends who shared similar diagnosis	I have two friends who went through their husbands having cancer and going through the similar things that we were walking through so they were able to relate… I would talk about how I felt the responsibilities or the heaviness of my situation. My emotional state…, how it was affecting our relationship between my husband and I. The things that I was missing from our relationship, things that I couldn't tell [my husband] because he was going through enough he didn't need to worry about those things, and so I felt like there was a lot of things that I couldn't really share because of that, and that I would share with my friends.	CG10
Barriers	Lack of communication from the healthcare team	I didn't feel like they explained anything at all to us it was. More or less. Everybody is different in the way they heal afterwards. I didn't feel like we got any answers as to what to expect after.	CG10
		There were several instances where my mom had come home from a surgery or a treatment, and she was having side effects that were going on for a long time. We didn't have anything to reference back to, to see exactly what we should do. At what point do we have to go to the ER? Who should we call? Where should we seek help? I mean, she had a surgery a couple of months back, and the only thing the paper said is, 'If you throw up three or more times, go to the ER,' but that's it. There wasn't a number to call. There weren't any signs that we should look out for, so it's just a lot of stress to be in that situation.	CG11
	Financial challenges	Going out or a job? I mean, that's not possible. I mean the first weeks were miserable because your life is in the toilet. It is painful. You start going to the toilet like twenty-five, thirty times a day. It was so exhausting.	PT11
	Low activation	My doctor is amazing and I know if I would have told him I was feeling almost depressed, he would have recommended a lot of stuff… but it's just I'm not the one reaching out and doing it or accepting it if someone offered it you know it's just me thinking I can handle everything on my own.	PT10

Facilitators

Adequate hospital resources

Rectal cancer survivors’ experiences could be significantly influenced by the availability and accessibility of social support services and specialists within the hospital system. Several cancer survivors mentioned their satisfaction with the supportive care their respective cancer centre was able to provide, which included counselling services from social workers, nutritionists, and stoma nurses, physical therapy, virtual support groups, one-on-one patient education sessions, follow-up phone calls, and self-care instructions.

I felt very lucky to have a stoma nurse in the hospital, who taught me how to care for myself. She came to visit every day when I was in the hospital. First day, she changed my bag and talked me through the process, then she guided me as I did it myself. She gave me a six-page procedure handout that described the process in detail. It was a very thorough education.- PT05

Everything was offered to me… Doctors took care of everything… Everyone is calling me, making it easy for me. Whether it’s a nutritionist or physical therapist, they'll call to offer. That brings peace of mind. - PT11

Capabilities to provide these services require interdisciplinary care teams at the hospital and adequate coordination support from doctors, nurses and staff. It makes social support services available and easily accessible for patients.

High health literacy level (including e-health literacy)

Health literacy level influences the knowledge and skills in finding access to social support services cancer survivors need. In our interview, we found that participants who were highly educated had higher health literacy levels and knew what to expect and what they would need after treatment. One participant who was a medical doctor described:

I've got people I can talk to, but I'm also very cognizant of where this could lead to where it might not lead to… Once that (surgery) was done, I can handle whatever comes next. - PT02

Another participant who was a faculty member in a research university described the experience that the physician trusted him in understanding academic research papers and believed reading could empower him. The physician would forward the articles as support sources. The ability to navigate and comprehend medical research and articles enabled cancer survivors to access social support resources.

I had Stage Three rectal cancer and the outcomes and the medical interventions are very different from someone who has straight colon cancer. It was hard to find resources for my cancer type. That’s why I turned to so much of the medical literature.- PT07

If I see anything on TV or read something, the first thing I do is look it up… if it’s from PubMed or a journal or an article, it’s likely legitimate… Then, I write it down so that when I talk to the doctor next Monday, I have it ready. - PT03

Some used social media such as online forums and video-sharing platforms as tools to access medical information and peer survivors’ cancer experiences for informational support and emotional support:

My husband and I watched a surgery on YouTube—we had to educate ourselves about my condition and potential outcomes. I was also interested in survivors' stories from people who had a similar surgical outcome to what I expected. I searched for survivor networks related to my cancer type and read personal stories. - PT07

The ability to identify the right tool to find reliable health information as well as personal stories relevant to own experience and to read and critically appraise the information is a critical facilitator for cancer survivors to access social support.

Having healthcare professionals in close social network

Support networks can help cancer survivors reach more resources. Having a healthcare professional in the close social network is a facilitator to access cancer social support services. Among our participants, many had close family members who were in the healthcare industry and understood the healthcare system, which helped them gain access to support services or provide those services directly. One participant mentioned that her father was a retired surgeon practising for 40 years from whom she was able to get support to understand her symptoms and know what to expect:

I was able to understand more of that by having him, be the doctor who had more time for me. Also to double check information I received from my colorectal specialist, to understand what she was talking about when she would tell me things. - PT05

A cancer survivor pointed out that his spouse’s role as a staff at a healthcare facility made it convenient for him to identify peer survivors and was then able to connect and learn about peer survivors’ experiences:

My wife works in a medical community and they do physical therapy chiropractic… There’s also imaging and orthopedics in the facility so they'll send people down for treatment and she facilitates some physical therapy treatments. Whenever she gets into discussions with people, if she finds someone with a similar situation to mine, she'll ask how they're doing. As a chaplain, she knows the importance of connecting, and if she thinks we'd be a good match, she'll connect us. - PT09

Support network members who were healthcare professionals also tended to take the role of monitoring situations such as medication and treatment so that they knew what was going on and could step in when they thought anything was abnormal or needed to be changed.

My mama is a retired nurse, so I would talk about details. She wanted all the lab report details, so she’s like, 'Send me your lab report.' She wanted to know about every single chemotherapy drug. - PT07

Another situation several survivors mentioned was having a strong personal relationship with the healthcare team. Some had this layer of support through early treatment, while others had them as friends and colleagues. The strong personal bonding with clinicians helped them understand the survivors’ needs and were able to provide the best customised support:

He’s been my psychiatrist for 25 years, so I've been seeing him for a long time, and he knows everything about me. He’s very helpful with anything I talk to him about and gives me emotional support. If I'm experiencing positive moments or things start going right, I can call him on the phone. - PT03

I'm friends with my providers. They administered the anesthetic and operated on me. - PT02

Having family or friends who shared similar diagnoses

Existing connections in the close social network that have shared similar diagnoses or have gone through similar treatment are important social support sources and can also help connect with social support. Because cancer can be hereditary, many participants shared that they had family members who got the same cancer diagnosis. Although they might not get it at the same age and the treatment and survivorship might not be exactly the same, having family members or friends through similar situations helped survivors prepare for the treatment and recovery and these people could understand their struggles and provide essential emotional and informational support.

I knew three individuals who recovered from colorectal cancer and one person I’m close to here in Dallas. I don’t think our cancers were the same, but close enough that he was a great help and comfort. – PT07

Participants also shared that having close friends who had experiences taking care of family members who had the same diagnosis helped them better understand the diagnosis and coping issues related to the diagnosis.

I have two friends whose husbands had cancer and experienced similar things we were going through. They could relate to my situation and help with many concerns and emotional issues I’m facing. – CG10

Barriers

Lack of communication with the healthcare team

A barrier to accessing social support services is not having information regarding the need for social services and access to social services. Also, many participants mentioned that they were not fully informed about the potential side effects of treatments and survivorship needs they might experience. The lack of communication from the healthcare team was particularly evident when discussing treatment side effects.

I learned my situation was perhaps one in ten. I understand why they wouldn’t prepare. But when I reached out, it would have been nice if the medical team was clear that I wasn’t the norm, maybe checking in every couple days or so. – PT07

Meanwhile, they also mentioned not being given any information about types of support services that were available. Some said the care team did not mention any support services they could access in the hospital such as mental health support or any other type of support.

I was never told about a dietitian or physical therapy, none of that. Right after my surgery to get my colostomy bag, they simply provided a booklet on recommended foods and books about cancer, but nothing regarding physical therapy. – PT10

Financial challenges

The ability to afford social support services is a significant factor affecting rectal cancer survivors in exploring and accessing social support. It is a common issue that such services are too expensive for survivors to afford.

Besides the reason that social support services are not affordable, unemployment caused by the cancer diagnosis is another reason leading to financial incapability. Losing their income source made it challenging for families affected by cancer. Initially, patients with cancer had to leave their work to get treatment:

Financially we went from a two-income household to a single-income household so it was a struggle. – PT10

Loss of employment for many not only means losing income sources but also means losing health insurance. Therefore, it makes social support services even more unaffordable.

Next, the caregiver, usually the spouse, would also have to be absent to take care of their loved one, which compounds the effect on household income:

Financial is hard especially when my husband was the only one working and had to miss work to take me to appointments. Now that I'm back working, we're still trying to recover late fees. While I do have insurance, sometimes it doesn't cover… – PT10

Given the financial difficulties, cancer survivors pointed out that there should be resources in the hospital to help navigate social support programmes and financial assistance:

They are supposed to have some guidance to help you navigate all of this, like social assistance, social support, and financial aspects … To sit with somebody and figure out a plan for paying for things prior to the surgery [and other treatment]. - PT09

Low activation

Activation involves four stages: (1) believing the patient’s role is important, (2) having the confidence and knowledge necessary to take action, (3) taking action to maintain and improve one’s health and (4) staying the course even under stress.²⁰ Many survivors reported a lack of motivation to take action to seek social support. There were many reasons behind the lack of motivation. Survivors indicated that not having people reach out to them directly decreased their interest in getting services. More survivors did not seek service because it was overwhelming to seek help compared with the status quo. This related to the discomfort of talking about cancer:

We are pretty private. She [the survivor] likes to do things for herself as much as possible. I think a lot of that just has to do with the nature of the kind of cancer, the symptoms, and the side effects. Your experience is obviously deeply personal and a little embarrassing, so it’s a little hard. - CG07

Or the idea of not wanting to become a burden:

There are resources that would help me, but I'm just not the type of person to reach out, do it, or accept it if someone offered it. It’s just me thinking I can handle everything on my own. - PT10

Discussion and conclusion

Discussion

This qualitative study explored the support-seeking experiences of rectal cancer survivors, revealing both facilitators and barriers to accessing tailored information and resources. Facilitators included sufficient hospital resources, advanced health literacy, robust healthcare connections and shared experiences, while inadequate communication with the care team, financial constraints and low motivation were barriers to survivors’ access to support.

The care team emerged as the cornerstone of cancer treatment and survivorship, serving as the primary source of information and support. This finding aligns with previous studies, emphasising the importance of healthcare professionals and specialty care in addressing survivors’ physical and psychological needs.^{13 21} In particular, Li et al²¹ found that patients strongly preferred receiving information from attending doctors and responsible nurses and¹³ proposed the provision of specialty care in wound, ostomy and continence/enterostomal therapy, as well as psychological counsellors and peer educators. Our participants, who had access to the aforementioned specialty services, confirmed that a multidisciplinary care team could significantly enhance the survivorship experience and mitigate psychological distress.

The significant influence of the care team on rectal cancer survivors’ experiences underscores the importance of effective patient–clinician communication in establishing robust clinical relationships and delivering comprehensive cancer care.^{22 23} Our study identified inadequate communication as a significant barrier to survivors' access to support, particularly concerning the lack of information about available support services and potential side effects of treatments. This corroborates previous findings,^{9 12 22} highlighting the consequences of poor communication, including patient frustration, dissatisfaction and a sense of impersonalised care. Our research further revealed instances where care teams failed to connect survivors with available support resources, emphasising the need for a comprehensive list of support resources¹⁸ to help survivors navigate available support, reducing pressure on the care team to identify needs and granting patients universal access to support resources.

Beyond the care team’s influence, our study identified disparities in survivors’ access to support resources based on health literacy, connection within the health system and connection with peers who had undergone similar treatments. These factors served as supplemental sources of information and support, particularly when care team communication was lacking. However, the time and resources required to develop these factors can exacerbate disparities between privileged and disadvantaged survivors. This gap is exacerbated in Texas, as in much of the world, due to long travel time for healthcare, concentration of specialised care in highly populated centres, and a multiethnic population with variable native language proficiency. To address this, we support implementing buddy systems²⁴ and nurse navigators,²⁵ especially in healthcare settings serving minority or disadvantaged communities.

Financial stress emerged as a significant factor impacting cancer treatment and survivorship experiences, affecting both patients and caregivers. Aligning with previous research, our study identified treatment costs, unemployment and loss of insurance coverage as key contributors to economic toxicity.^{9 21} These factors not only create financial strain but also hinder patients’ ability to adhere to treatment plans and follow-up care, which can negatively affect their long-term health outcomes.^{9 15 26} Expanding on this literature, our study highlighted the financial impact on caregivers. We found that supporting survivors through treatment and recovery could burden caregivers with time and stress, potentially affecting their income. This effect was notable when the caregiver was the household’s sole provider, revealing an underexplored aspect of financial stress in cancer survivorship that extended to the entire family unit.

Patient activation played a crucial role in post-treatment survivorship, influencing survivors’ physical and mental health.^{23 27 28} Consistent with previous research,²⁷ we found that low patient activation correlated with higher levels of depression and anxiety. Our research furthered this understanding by revealing how low motivation affected survivors’ access to support. We discovered that low motivation not only impeded survivors’ desire to seek support⁹ but also led them to decline necessary assistance when offered. This insight provides potential explanations for the limited use of available resources and underscores the complex relationship between patient activation, mental health and support-seeking behaviours. These findings emphasise the need for targeted interventions and future research focused on developing and testing strategies to enhance patient activation, particularly among less motivated survivors, to improve both mental health outcomes and the effectiveness of care delivery and support access.

Limitations

Our pilot study has certain limitations. The small sample size, recruited exclusively from two CRC treatment sites in Texas due to regulation and logistical constraints, may limit the generalisability of our findings. Also, this sample predominantly comprised individuals of Caucasian ethnicity with high educational levels, which might skew the results. Future research could characterise support-seeking experiences of rectal cancer survivors from more diverse backgrounds and regions. Furthermore, our choice to conduct one-time interviews with rectal cancer survivors introduces the potential for recall bias to influence their narrative of treatment journeys. By design, our study offers a snapshot of their perspective, lacking a longitudinal aspect. Incorporating longitudinal interviews that track patients through their treatment and recovery phases could enhance future research. Additionally, since most survivors underwent rectal cancer treatment in 2021—a period highly impacted by the COVID-19 pandemic, particularly in healthcare facilities—the reported experiences may not accurately reflect the broader population’s experiences.

Future research and implications

Our study highlights several areas for future research and improvement in rectal cancer survivorship care. To start with, care sites should develop and test strategies for proactively providing information about potential treatment side effects, survivorship needs and available support services. Research could evaluate the effectiveness of various communication methods and tools, such as comprehensive information sheets or digital resources, in improving survivors’ access to and utilisation of support resources. Given the significant impact of financial stress on survivorship experiences, future studies should also explore interventions to mitigate these burdens. This could include evaluating the effectiveness of financial counselling services, investigating policy changes to enhance insurance coverage and developing programmes to support employment during and after treatment.

Building on our findings regarding the association between patient activation and support-seeking behaviours, future research should focus on developing and testing interventions aimed at enhancing motivation and engagement among less motivated survivors. This could involve exploring personalised coaching, digital health tools or peer support programmes. Furthermore, the establishment and evaluation of a facilitated social network for rectal cancer survivors presents a promising avenue for research. This intervention should be rigorously tested for its effectiveness in improving social health measures and addressing the identified challenges in survivorship support. Key areas to evaluate include the network’s ability to consolidate and improve access to hospital resources, its effectiveness in facilitating the relationship between patients and healthcare professionals, and its impact on patient activation and engagement with support services.

Finally, given our findings on the financial impact on caregivers, future research should also address the needs of this group. Studies could explore interventions to support caregivers both financially and emotionally, as well as investigate the long-term impacts of caregiving on family dynamics and economic stability. By addressing these areas, future research can contribute to the development of more comprehensive, accessible and effective survivorship care for patients with rectal cancer and their families, ultimately improving the quality of life for survivors and addressing the complex challenges they face in the post-treatment phase.

Conclusion

Overall, adequate hospital resources, a high level of health literacy and close connections with healthcare professionals and peers sharing a similar cancer experience can facilitate survivors’ access to social support, while the lack of communication with the healthcare team, financial hardships and a lack of motivation to take actions to seek social support can hinder survivors’ receipt of support services.

Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.