Supportive Care Needs of Patients With Temporary Ostomy in Enhanced Recovery After Surgery: A Mixed-Methods Study

ABSTRACT Background Enhanced recovery after surgery (ERAS), a global surgical quality improvement initiative, reduces the length of stay in the hospital. Temporary stoma care for rectal cancer is complex, and patients require prolonged care services to adjust to the stoma. The shorter stay durations in the new model challenge the conventional care pathways and create new patient needs. Purpose This study was designed to explore the supportive care needs of patients under the new surgical model to provide a reference for the design of ERAS nursing care plans. Methods A convergent parallel mixed-methods design was used in this study. Patients with temporary stomas for rectal cancer were recruited using a convenience sampling method in gastrointestinal surgery wards and wound & stoma clinics in two public tertiary care hospitals in China. Standardized questionnaires were administered to 140 patients to collect quantitative data, and semistructured interviews were conducted individually with 13 patients to collect qualitative data. The questionnaire data were analyzed using descriptive statistics, and the interview data were analyzed using thematic analysis. Results “Health system and information needs” and “care and support needs” were identified in both the qualitative and quantitative analyses as the most significant unmet needs of the participants. In addition, the qualitative analysis identified receiving focused stoma care instructions and easily understandable information as essential to fulfilling health system and information needs. Care and support needs included access to continued postdischarge services and attention from medical professionals. Conclusion/Implications for Practice The participants in this study experienced a variety of unmet supportive care needs under the ERAS protocol, with gaps particularly notable in two categories: “health system and information needs” and “care and support needs.” Increased perioperative care and shorter hospital stays under the ERAS protocol reduce opportunities for patients to receive targeted instruction and shift much of the ostomy education and care workload out of the hospital, requiring greater attention from clinical nurses to ensure quality of care.


Introduction
Rectal cancer is a common type of tumor with a high incidence and mortality rate worldwide (Sung et al., 2021).Surgery is the primary treatment for rectal cancers, and low anterior resection is widely used in anal-sparing surgeries (Du et al., 2021).Temporary fecal diversion has been utilized alongside anterior resections for decades to protect the anus as much as possible and prevent anastomotic fistulas, which are the most severe postoperative complication (Gu & Wu, 2015).Loop transverse colostomy and loop ileostomy (LI) are common types of temporary diverting stomas.
Evidence-based studies have shown that LI has fewer complications during ostomy formation and reversal than loop transverse colostomy (Du et al., 2021;Gavriilidis et al., 2019;Güenaga et al., 2007).Therefore, LI is the leading temporary fecal diversion procedure.However, the high stool output after ileostomy and the large number of digestive enzymes in the anal discharge increase the challenge of proper ileostomy care.Improper care practices, for example, frequently changing appliances and consuming high-sugar foods, significantly increase the risk of complications such as peristomal dermatitis and dehydration (Chudner et al., 2019;Du et al., 2021).The primary focus of colorectal surgical care is the professional direction and supervision of patients with ileostomies through, for example, the provision of standardized dietary recommendations and discharge care programs by enterostomal therapists.
The enhanced recovery after surgery (ERAS) program is an evidence-based and multidisciplinary perioperative care pathway that has been shown to reduce postoperative complication rates, hospitalization duration, and costs and is becoming the standard of care and best practice in many surgical specialties around the world (Ljungqvist et al., 2017(Ljungqvist et al., , 2021)).The ERAS program imposes new requirements in several areas of perioperative care, including bowel preparation, rehabilitation training, and nutritional correction (Carli et al., 2020;Ripollés-Melchor, Abad-Motos, Cecconi, et al., 2022).These changes, especially related to the substantially reduced hospitalization durations, disrupt standard care plans and generate new patient care demands.In addition, most existing ERAS programs are based on expert consensus and lack consideration of the patient perspective, undermining patient compliance rates and intervention effects (Fischer et al., 2021;Forsmo et al., 2016).The care requirements of patients under the new ERAS paradigm have yet to be extensively studied.
Supportive care aims to provide cancer patients with the services necessary to meet their informational, emotional, social, and physical needs throughout the cancer treatment trajectory (Kotronoulas et al., 2017).Identifying supportive care needs (SCNs) is fundamental to designing effective cancer care programs.Caring for patients with rectal cancer with temporary ostomy is one of the most challenging and complex aspects of clinical cancer care, as these patients have substantial SCNs.Furthermore, the application of ERAS in the surgical treatment of colorectal cancer presents additional challenges and SCNs for patients.The SCNs of patients with colorectal cancer were investigated in this study using a mixed approach to provide a reference for the future development of related ERAS nursing care plans.

Study Design
A convergent parallel mixed-methods design was used to collect quantitative and qualitative data concurrently.The quantitative component of this study involved conducting a cross-sectional questionnaire-based survey to determine the content and level of SCNs in patients with rectal cancer with temporary ostomy in the ERAS protocol.The qualitative component involved conducting semistructured individual interviews with individual patients to further elucidate the content of SCNs.

Setting and Participants
In the quantitative component of this study, patients with rectal cancer with temporary ostomy were recruited using a convenience sampling method between March and June 2020 at the gastrointestinal surgery ward and wound & ostomy clinic of two public tertiary hospitals in Changchun, Jilin Province, China.Eligibility criteria were patients who (a) were 18 years or older, (b) were diagnosed with primary rectal cancer, (c) had received radical rectal cancer surgery and temporary ostomy under the ERAS protocol for the first time, and (d) voluntarily provided informed consent to participate.Exclusion criteria were (a) being unaware of their illness, (b) having a temporary ostomy for other reasons (trauma, ulcerative colitis, etc.), and (c) having a psychiatric disorder or hearing impairment.
In the qualitative component of this study, 13 of the participants from the quantitative component were selected using maximum variation sampling for participation in semistructured interviews.A maximum variation sample was constructed by identifying the critical dimensions of variations and then selecting those participants who differ as much as possible from each other in terms of these dimensions (Benoot et al., 2016).The dimensions considered included (a) background (age, gender, educational level, and place of residence) and (b) duration of living with a temporary stoma (perioperative period, 1-6 months after the operation and more than 6 months, the latter of which is classified as delayed closure of temporary ostomy).

Data Collection
In the quantitative component of this study, the participants completed the questionnaire, which collected data in three categories: demographics (age, gender, and educational level), clinical characteristics (type of stoma, duration with stoma), and SCNs.The general characteristics data, including the demographics information and duration with stoma, were obtained from self-reports and medical records.The Supportive Care Needs Survey Short Form 34 was used to assess the unmet SCNs of participants in five domains: physical and daily living needs (five items), psychological needs (10 items), health system and informational needs (11 items), care and support needs (five items), and sexual needs (three items; Boyes et al., 2009).The participants were asked to rate the need intensity of each over the past month on a 5-point Likert scale: 1 = no need: not applicable, 2 = no need: satisfied, 3 = low need, 4 = moderate need, and 5 = high need.The Chinese version of the SCN survey form has been previously validated for good reliability and validity (Au et al., 2011) and has been widely used to assess the needs of patients with breast and colorectal cancers (Lam et al., 2016;Li et al., 2013).
Preliminary interview guidelines for the qualitative component of this study were prepared based on prior research and the advice of medical experts (one senior doctor and one nurse).The guideline was modified based on the results of a preinterview conducted on two patients with temporary ostomies.The content and sequence of questions included introductory, central, and closing questions following the structure developed by Krueger and Casey (2014).The following questions were asked to obtain qualitative data: "What did you experience after receiving a temporary ostomy under the ERAS protocol?","What did you find most difficult during this period?","What kind of help/support did you receive during this time?", and "What kind of help/support did you need most during this time?"

Ethical Considerations
This study was reviewed and granted exempt status by the ethics committee of the First Hospital of Jilin University (No. 2020-454).The study purpose and methods were clearly explained to the participants, whose anonymity and confidentiality were maintained.

Study Rigor
Study rigor was enhanced by triangulating among data sources (Carter et al., 2014), data collection methods, and researchers.Recruiting participants from different hospitals (two tertiary public hospitals) and settings (wards and wound & ostomy clinic) triangulates data sources and helps maximize diversity among study subjects; using different data collection methods, including interviews, observations, and field notes, facilitates triangulation and increases study credibility; and using two researchers to conduct surveys, interviews, and data analysis promotes diversity in observations and findings.

Data Analysis
Quantitative data were analyzed in this study using IBM SPSS Statistics 23.0 (IBM Inc., Armonk, NY, USA).Demographic, clinical characteristic, and SCN data were analyzed using frequency and percentage (count data) and mean and standard deviation (measurement data).In the qualitative component, the semistructured individual interviews were conducted for 30-50 minutes each.Within 24 hours of each interview, the audio was transcribed word for word, and the textual data were supplemented using verbal and nonverbal behavioral records for each participant noted during the interview.All data were analyzed separately by two researchers using the thematic analysis method.

Quantitative Results
Among the 140 participants in the quantitative component of this study, 57.9% were male, most (76.4%) were over 50 years old, 45.7% suffered from one or more chronic diseases, and 67.9% had lived with ostomy for 1-3 months (Table 1).
"Health system and informational needs" earned the highest average score of 61.72, followed by "care and support needs" (49.43).Sexual needs earned the lowest average score of 20 (Table 2).The analysis of individual items found that the 10 items with the highest scores were all in the domain of health system and informational needs, with unmet need rates between 70.0% and 81.4%.The three items with the lowest scores were all in the domain of sexual needs, with unmet need rates between 22.1% and 27.1% (Table 3).

Qualitative Results
Thirteen patients participated in the qualitative component of this study, including six men and seven women aged 38-80 years.These patients had lived with ostomy for periods Monthly per capita household income Business insurance 0.0 < 1,000 23.6 1,000-3,000 40.7 3,001-5,000 22.9 > 5,000 12.9 (continues) between 5 days and 13 months (Table 4).Five main themes emerged after analysis of the transcripts, with the descriptions of the themes and subthemes shown in Table 5.

Health System and Informational Needs
Health systems and informational needs, particularly relating to the diagnosis and treatment of rectal cancer and guidance on ostomy care, were mentioned most frequently by the participants.

Easy-to-understand information on rectal cancer diagnosis and treatment
The vast majority of the interview participants reported receiving insufficient information from their healthcare professionals.One issue of concern included the purpose and personalized interpretation of various medical tests and treatments, cancer recurrence monitoring, the health improvement strategies used, and health insurance.A second issue was healthcare professionals communicating at a level overly difficult for patients to understand clearly (e.g., using medical jargon).The participants expressed desiring information that was easier to understand.Tailored ostomy care guidance Most of the participants shared that they had not received targeted ostomy care guidance.Although they had participated in many ostomy-related activities (e.g., lectures, brochures, videos), they did not know what information was applicable to them.

Access to ongoing postdischarge services
Most of the participants, particularly those in rural areas, reported requiring ongoing services after discharge to guide their postoperative rehabilitation and ostomy care.Because of transportation issues and the lack of information regarding ostomy wound clinics in their area, the participants were eager to learn how to access follow-up services.
I live in the countryside.It's too hard to make a trip here.I don't know if any clinics in our city can care for this problem, but I think probably not."OP10: "It felt like my treatment was interrupted after I was discharged and that no one cared about me or my ostomy.(OP5) The Journal of Nursing Research

Attention from healthcare professionals
The majority of participants reported that they had not received sufficient attention from medical professionals, especially oncologists.Although the participants could appreciate the busy workload of the doctors, they still wanted more explanations and guidance from them.
At the time, my surgeon was always busy, and I rarely got to see him.I knew they had a lot of Note.H = health system and information needs; P = psychological needs; D = physical and daily living needs; C = care and support needs; S = sexual needs.
surgeries, but I still wanted him to talk to me more....I was eager to learn from him what was going on with me.(OP1) You were too busy to care for us....I know there is no solution to this.But as a patient, I still want to be cared for.(OP4) In addition, some patients wanted healthcare professionals to be more compassionate when communicating with them.
The way some doctors and nurses talked made me feel bad.We're not machines and can't do what you say right away.Please be more patient with us.(OP3)

Psychological/Emotional Consequences
The participants described a variety of psychological issues related to their cancer or treatment process, including low self-esteem related to ostomy, concerns about the future, and guilt towards family.
Low self-esteem related to stoma Most of the participants described experiencing low selfesteem because of the disruption of the ostomy to their intestinal physiology and the ensuing unusual odor.
Even if my life is saved, hanging an ostomy bag and smelling bad makes me extra sensitive to how people look at me or the tone of their voice.(OP4)   Because of the irregularity of ileostomy evacuation, many of the patients with ileostomies described perceiving a loss of control over their bowel movements and exhibited even more severe levels of low self-esteem.
I don't know when I'm going to have a bowel movement and how much each time.... I'm afraid to go out and see my friends and feel like a rat in the gutter-smelly and dirty.(OP10) Concerns about the future Concerns reported by most participants include worries about their prognosis and their inability to perform ostomy care independently.In addition to concerns about the recurrence of their rectal cancer, many worried whether the ostomy would be closed on time.
The doctor said that not everyone can have their ostomy successfully closed, and I'm worried about myself.(OP9) Perioperative patients expressed concerns about their and their caregivers' abilities to master ostomy care techniques.
The hospital stay is so short now, and I haven't learned many things properly yet.What should I do if I can't take good care of my ostomy after I leave the hospital?(OP1) My daughter still can't do ostomy care.I'm worried.(OP5)

Guilt towards family
Because of the complexity of ostomy care, long-term care from a dedicated person, usually a spouse or children, is often required after discharge.In addition, the costs of surgery and the ostomy system are high.Some of the participants expressed feeling guilt towards their family members.
My wife has to get up at about 5 o'clock every morning to change my ostomy system, and my son must change it for me when he gets off work....This troublesome illness, I feel very sorry for my family.(OP10) I am so old, already halfway to the grave, so I feel very guilty for spending so much money and burdening my children.(OP11)

Physical and Daily Living Needs
Most of the participants described anal/ostomy-specific symptoms and sleep disturbances associated with high ileostomy drainage.

Anal and ostomy-specific symptoms
Most of the participants described a sensation of anal swelling and itching of the anal skin because of the prolonged elimination of bowel fluid from the anus.In addition, many patients complained of increased ostomy defecation and peristomal skin redness and itching due to inadequate mastery of ostomy care by themselves or their caregivers.
I always feel swelling, moisture, and itchiness in my anus.Often there was fluid coming out of my anus, and I had to put on sanitary pads.(OP13) The ostomy I had was painful!After I got home, I could not fix the skin barrier by myself, and it kept falling off as soon as I put it on.So, the skin around my ostomy developed rashes.There was always fluid coming out of my anus, and it's so sore and itchy that I couldn't even sit down.(OP2)

Sleep disturbances
Most of the participants complained that they had to interrupt their sleep for ostomy care because of excessive ostomy drainage or excessive venting, which seriously affected their sleep quality and led to daytime fatigue.

Interpersonal/Intimacy Needs
Most of the participants reported varying degrees of social distancing and impaired intimacy.Distancing from relatives and friends was associated with concerns regarding frequent bowel movements and the resulting odor.
I don't go to my friends' weddings anymore and usually don't dare to go out.Thinking about meeting people makes me want to hide far away, fearing that others will smell my stench.(OP3) Some of the participants reported that intimacy with their spouse was impaired.
Since the ostomy procedure, I feel my wife looks at me differently; maybe I am overthinking it.(OP2) My husband and I used to talk about everything.But now we both tacitly avoid deep conversations.(OP9) Only one of the participants reported his sexual needs as not being met, with most reporting loss of sexual interest because of age and disease.

Discussion
This mixed-methods study was designed to understand the SCNs of patients with a temporary ostomy for rectal cancer being treated under an ERAS protocol.The results of both the qualitative and quantitative components of this study show the participants had a wide range of unmet needs, with "health systems and information needs" and "care and support needs" being particularly significant.This finding is consistent with other studies on the needs of patients with colorectal cancer (Andreu et al., 2022;van Mossel et al., 2012).
In addition, the results of both the quantitative and qualitative components highlighted an unmet need for information related to cancer diagnosis, treatment, and prognosis.The qualitative research further showed inability to understand and lack of adequate information to be the leading causes of this unmet need.The findings of numerous previous studies confirm an association between unmet informational needs and lower levels of self-management and quality of life (Blödt et al., 2018;Wieldraaijer et al., 2019).Currently, most information for patients with a temporary ostomy for rectal cancer is provided via standardized educational brochures and videos.However, patients have different levels of comprehension influenced by educational level, health literacy, and mental state.Those with lower levels of comprehension have difficulty in actualizing the information provided (i.e., translating knowledge into self-care), which explains their need for more or differently presented information.Thus, to meet this need, it is necessary to design targeted health information services based on patient characteristics or level of comprehension (Blödt et al., 2018).In addition, the ERAS protocol may further increase the general level of informational need.ERAS is a perioperative bundled multimodal strategy that includes nutrition optimization, standardized analgesic and anesthetic regimens, and early mobilization, with the ultimate goal of reducing surgical stress, improving clinical outcomes, and reducing length of hospitalization (Ripollés-Melchor, Abad-Motos, & Zorrilla-Vaca, 2022).With shorter hospital stays and more intensive treatment, adequate perioperative information counseling is key to ensuring patient compliance and medical safety.Perioperative counseling has proven crucial in ERAS protocols to encouraging recovery and has been linked to significantly reduced hospital stays (Forsmo et al., 2016(Forsmo et al., , 2018)).However, because of manpower constraints, current perioperative counseling is focused on the preoperative period and lacks long-term attention and active response to postoperative patient information needs.Therefore, adequate perioperative consultation should be a priority for future improvements in ERAS protocols.
Because of the location, shape, and height of ileostomies, ileostomy treatment is intricate and personalized.Inadequate ostomy care may result in readmission because of dehydration in these patients and ostomy-related problems (e.g., peristomal irritating dermatitis, skin-mucosal separation; Ayik et al., 2020;Vogel et al., 2022).In this study, a general need was identified for tailored ostomy care guidance in patients receiving the ERAS protocol.Because this protocol drastically reduces the length of hospital stays and the number of times patients receive focused instructions, traditional general ostomy education (lectures, brochures, videos) cannot meet the individual needs of patients.Therefore, adequate face-to-face stoma instruction should be provided during the patient's hospital stay.
Both the qualitative and quantitative components of this study identified the importance of access to ongoing posthospital services in addressing or resolving unmet informational needs.Current discharge instructions request that patients make regular follow-up visits to the wound and ostomy clinic.Because of the limited number of enterostomal therapists, most communities, especially in rural areas, lack relevant professionals.There is a tremendous unmet need for posthospital patient care services in remote areas because of transportation, time, and other constraints.In recent years, telemedicine has been used to promote self-management in patients with stoma, with promising results (Grant et al., 2022;Weinstein et al., 2021;Yiğitoğlu & Şendir, 2021) that suggest a viable solution for patients in remote areas to access postdischarge stoma services.In addition, the results of both quantitative and qualitative components identified a need for greater attention and empathy from medical professionals.The ERAS protocol accelerates bed turnover, reducing patient lengths of stay from the traditional 10-15 days to 5-7 days, which increases the overall workload of medical professionals.Increased workload is an important inhibitor of empathic behavior in medical personnel (Elayyan et al., 2018).Therefore, a fundamental problem in today's therapeutic work is balancing the increased demands of ERAS protocols with the emotional and communication needs of patients.
Rectal cancer diagnoses and ostomy surgery are highly stressful events with significant psychological impacts on patients.The findings of the quantitative component of this study identified widespread concerns about death and deterioration, whereas the qualitative component confirmed concerns regarding prognostic outcomes.These echo the findings of many other studies on the needs of patients with cancer (McMullen et al., 2019;Sodergren et al., 2019;Yoon et al., 2020).In addition, the ostomy-related low self-esteem identified in the qualitative component was also found in other psychological studies on ostomy patients (Ayaz-Alkaya, 2019; Qin et al., 2020).Unlike the sense of guilt experienced in European lung cancer survivors, which stems primarily from "survival" (Perloff et al., 2019), the sense of guilt in temporary ostomy patients stems from the perceived burden placed on caregivers, which is an issue that may be influenced or exacerbated by the collectivist cultural mores prevalent in many East Asian countries.Although the ERAS model emphasizes the reduction of patient stress, corresponding psychological support and treatments are rarely implemented, both of which should be a vital aspect of improving the ERAS model going forward.
The qualitative component of this study identified anal and ostomy-specific symptoms as significant concerns for patients with temporary ostomies.Although the anus loses its bowel function during this period, the intestine continues to secrete bowel fluid that may irritate the anus and surrounding skin.Thus, anal and perianal skin care must also be incorporated into patient education.As found in this and other studies, the frequent defecation need experienced by patients with ileostomies severely affects their social activities The Journal of Nursing Research and sleep quality (Kotronoulas et al., 2017;Mohamed et al., 2021).Moreover, both the qualitative and quantitative components found a low level of sexual needs in the participants, which may relate to the more-conservative nature of sexual culture in East Asia (Ng & Lau, 1990).
The limitations of this study include the small sample size recruited from only two public tertiary hospitals in China.Also, the cultural background of the participants and the healthcare system they were in may differ significantly from their peers in other countries and regions.These issues may limit the generalizability of the findings and recommendations.In addition, a cross-sectional design, which cannot dynamically analyze the trajectory of patients' SCNs, was used.Thus, further studies using a longitudinal study design are recommended.

Conclusions
The findings of this study demonstrate that patients with a temporary ostomy for rectal cancer treated under an ERAS protocol experience a variety of unmet SCNs.These unmet SCNs are particularly severe in the domains of "health system and informational needs" and "care and support needs."Compared to conventional care pathways, the two main characteristics of ERAS programs, namely, more extensive perioperative care and shorter hospital stays, reduce the chance for patients to receive targeted instruction and shift a large portion of the workload for ostomy education and care outside of the hospital, which increases the burdens on the patients and their caregivers.Therefore, personalized perioperative care programs and ongoing postdischarge services should be redesigned to match the SCNs of patients receiving treatment under ERAS protocols.

Implications for Practice
The self-perceived SCNs of patients with ostomies receiving care under the new surgical paradigm of ERAS were explored in this study with the goal of providing insights and recommendations for ERAS program improvements in the future.The findings revealed extensive unmet needs in the two areas of "health systems and information" and "care and support."Because of shorter hospital stays, broader perioperative care, and the inherent complexity involved in ostomy care, patients require personalized consultation and ongoing postdischarge services.Traditional stoma education (lectures, brochures, videos) suffers from limitations because of its inability to adequately educate or prepare individuals with lower cognitive abilities.Therefore, developing a targeted perioperative and postdischarge sequential ostomy care delivery model should be a priority for the ERAS nursing care plan.In addition, the high bed turnover and ensuing high workload associated with the ERAS model reduces the amount of time available for medical staff to interact with patients.This highlights the need for clinical staff and administrators to focus attention on maintaining an optimal balance between clinical responsibilities and patient interaction.
to emotions and coping (a) Low self-esteem related to stoma (b) Concerns about the future (c) Guilt towards family 4. Physical and daily living needs Patient needs related to coping with physical symptoms, complications, side effects of treatment, and performing daily physical activities (a) Anal and ostomy-specific symptoms (b) Sleep disturbances 5. Interpersonal/intimacy needs Patient needs related to social and intimate relationships (a) Social distancing (b) Impaired intimacy The Journal of Nursing Research

I
have to get up at least twice at night because the ostomy drains a lot of fluid.If I sleep longer, the ostomy bag will fall off when it becomes full.(OP2) This disrupts my sleep a great deal.Intermittent sleep makes me dizzy during the day, interfering with my daily life.(OP2)

Table 1
General Characteristics of Participants in the Quantitative Component (N = 140) had a lot of tests and medication during this hospitalization, but I didn't know what these were for.Although the doctors often talked to me, I couldn't understand them.(OP1) How should I adjust my diet?What symptoms should I pay attention to?What conditions indicate that my cancer may have recurred?In fact, we don't know any of this.We need this information.(OP11)

Table 2
Scores for Each Domain of Supportive Care Needs (N = 140)

Table 3
Score and Rank of Each Supportive Care Needs Item (N = 140)

Table 4
General Characteristics of Respondents in the Qualitative Component (N = 13)