Problems Experienced by Spouses of Turkish Patients With a Stoma: A Descriptive, Cross-Sectional Study

The spouses of persons with an ostomy can experience various problems with regard to their new life situation. Purpose: A study was conducted to determine the problems encountered by spouses of people with an intestinal stoma and examine practices used to address these problems. Methods: The descriptive, cross-sectional study was conducted between November 2, 2015, and February 29, 2016, at 3 university hospitals in Istanbul, Turkey. Eligible participants were spouses of patients who were 18 years of age or older and who had a stoma for at least 3 months. During separate interviews with researchers, patients answered 15 open- and closed-ended demographic and clinical background questions, and spouses answered 10- open- and closed-ended questions regarding their demographic characteristics and 40 open- and closed-ended questions addressing the physiological, work/life, psychological, and economic problems they experienced as the spouse of a person with a stoma and how they handled these issues. Data were entered into statistical software for analysis; frequency and percentage distributions were reported. Results: Participants included 80 patients and their spouses; 50 (62.5%) patients were male (average age 56.53 ±14.57 years), 55 (68.8%) did not work after the operation, 58 (72.5%) had an ileostomy, and 62 (77.5%) were cared for by their spouse. Spouses included 50 women (62.5%), average age 54.14 ± 13.63 years. Couples had been married an average of 29.87 ± 14.52 years. The most common problems reported by partners were odor (51, 63.7%), housework (27, 33.7%), anxiety (26, 32.5%), loud gas (25, 31.2%), cutting the adapter to the size of the ostomy (25, 31.2%), desperation/pessimism (24, 30.0%), and stoma appearance (23, 28.7%). Spouses cited a variety of coping mechanisms, including  sleeping in different bedrooms and attributing the health problem to god’s will, which sometimes added to the psychological issues they experienced. Conclusion: Spouses of stoma patients experience psychological and social issues and could benefit from attention to their concerns and demonstrations of how to provide care for their partners.

Colorectal cancer is associated with high mortality and morbidity in the United States and other Western countries.¹ According to a report published by International Agency for Research on Cancer² in 2012, colorectal cancers were the third most common cancer in men and the second most common in women, with an increasing incidence rate worldwide; in 2016, the American Cancer Society and Turkish Ministry of Health (www.saglik.gov.tr) reported colorectal cancer was the third most common cancer in men and women.³ The number of patients having stoma surgery is increasing as colorectal cancer incidence increases.⁴

Literature reviews by Karadağ⁵ (2010) and Karadağ and Korkut⁶ (2010) found patients encountered many problems (eg, physiological problems such as peristomal skin-related complications and stool leakage and psychological problems affecting quality of life) despite advances in medical technology, better surgical techniques, early diagnosis, and the increased availability of comfortable and advanced stoma care equipment. A descriptive study by Kılıç et al⁷ (2007) (N = 40) reported the occurrence of psychological problems including altered body image and decreased self-esteem; similarly, a descriptive cross-sectional study by Aktaş and Baykara⁸ (2015) (N = 60) revealed the social life of stoma patients was affected and many patients stopped working after surgery. The permission (P), limited information (LI), specific suggestions (SS), and intensive therapy (IT) (PLISSIT) model⁹ used in assessing sexual problems found physiological, psychological, and social problems experienced by people with a stoma negatively affected their sexual function and personal responsibilities. One reason for these problems is that excretory system functions, which were once private for the patient, are now in part revealed by the stoma. Other reasons include loss of independence, major changes in patient’s roles and responsibilities, and anatomical and physiological changes in the body.^8,9

Problems also are experienced by family caregivers, particularly spouses and partners of persons with a stoma. Problems experienced by patients’ spouses/partners have been found to gradually increase over time and become more complicated if stoma surgery was performed due to cancer.^8,10-13 Although descriptive, cross-sectional, and phenomenological studies have reported problems experienced by people with a stoma,^{7-9,10-12,14-16} few studies have focused on problems experienced by their spouses/partners whose lives are also significantly affected. Aktaş and Baykara⁸ found 80% of spouses of people with a stoma stated they looked at their spouses/partners differently and were ashamed of looking at their partner’s body. A descriptive study of family caregivers for people undergoing chemotherapy and radiotherapy in Turkey (N = 120) by Karabuğa and Pınar¹³ (2013) determined that 53.3% of caregivers failed to fulfill their personal responsibilities (eg, not doing daily household chores), 30% of them experienced problems in their careers, 15% had ongoing problems in their family relationships, and 45% had ongoing problems in their marriages. According to a quantitative study by Palma et al¹⁷ (2012) in Italy (N = 144), family caregivers of people with a stoma were found to have poor quality of life, role conflicts within the family, negative emotions, health issues, and depression and anxiety.

Ostomy or wound ostomy and continence (WOC) nurses provide care, education, consultations, and rehabilitation services for patients and their families in stomatherapy units. Descriptive, cross-sectional research,⁸ qualitative and descriptive study,¹² and phenomenological research¹⁸ emphasize the importance of support from family, spouse, and friends for people with a stoma to maintain their daily life activities and adapt to social life. Ostomy care nurses often form close relationships with their patients and support them with education, care, and consultation services. However, there is limited scientific data to help them elaborate on the spouse’s problems and plan services for stoma patients’ spouses. In addition, problems and solution recommendations should be investigated within the context of each country due to sociocultural differences in interpersonal relationships between the spouses. With some exceptions, in the Turkish culture a man who has undergone surgery is expected to be taken care of by his wife and/or daughter. When the patient is a woman, care responsibilities fall to her daughter or daughter-in-law.

Roles and responsibilities of WOC nurses in Turkey are delineated by the Nursing Regulations of 2011 from the Turkish Ministry of Health within the framework of roles defined by the World Council of Enterostomal Therapists.¹⁹ The website of the Turkish wound ostomy continence nurses society lists the addresses of all 35 stomatherapy units in Turkey. Patients and their families can reach out to a center for support from WOC nurses and colorectal surgeons. In addition, call centers of some companies selling ostomy products and some private hospital call centers provide remote services for patients and their families; plus, patient platforms, such as Great Comeback and World Ostomy Day, enable people with an ostomy to meet and support each other.

The purpose of this prospective study was to determine the problems encountered by spouses of people with a stoma and to examine practices used to address these problems. The research questions were:
1.    What are the sociodemographic characteristics of  spouses of people with a stoma?
2.    What are the physical (eg, handling ostomy appliances), psychological, and social challenges experienced by spouses of people with a stoma?
3.    How do the spouses of people with a stoma handle their physical, psychological, and social problems?

Ethical considerations. Before conducting the study, approval was obtained from the Koç University Committee on Human Resources (2015.134.IRB2.050). Written consent were secured from the chief physician offices of a Foundation University Hospital (15.12.2015) and 2 public university hospitals (01.09.2015-96009, 02.10.2015-306973) where the research data were collected. The participating people with a stoma and their spouses were informed about the purpose and methods of the study by the researcher; oral consent was obtained from patients with a stoma who were willing to participate in the research, and written informed consent was obtained from their spouses.

Study setting and sample. The research sample comprised all consecutive patients who had surgery in either of the public university hospitals and who visited the foundation university hospital for their outpatient appointments. Inclusion criteria stipulated patients must be older than 18 years of age, married, consent to participate in the study, and have had a stoma  as a result of a permanent or temporary ileostomy or colostomy for at least 3 months. Spouses of patients who met these criteria were included. A person was identified as a spouse according to Turkish civil code; only persons who were officially married were included in the study. Urostomy patients and their spouses were not included.

Data collection. Data forms were completed and/or collected during outpatient visits and/or when obtaining  ostomy supplies from vendors. Data were collected between November 2, 2015, and February 29, 2016, using 3 questionnaires developed based on the researcher’s experience and the existing literature (see Figure).11,17,18,20-22 The survey forms were evaluated by a committee of 3 experts appointed by the Koç University Institute of Health Sciences. Before data collection, 3 patients and their spouses trialed the forms, and corrections were made according to their feedback; items were edited to enhance specifics regarding the ostomy, ostomy care, and psychological effects of this situation. Content revisions were not needed, and the forms were finalized after approval from the committee.

The Introductory Form for People with a Stoma comprised 15 open-ended (eg, who provides stoma care, the reason for stoma surgery, and the length of time with the stoma) and closed-ended questions (eg, gender, stoma type, education, employment before and after the surgery) that addressed the defining characteristics of people with a stoma and their stoma characteristics.

The Introductory Form for Spouses of People with a Stoma comprised 10 open-ended (eg, employment) and closed-ended questions (eg, gender, education) that addressed defining characteristics of the spouses of people with a stoma.

The Identification Form for Problems Experienced by Spouses of People with a Stoma and Their Practices for Handling These Problems was structured as 3 tables and had open-ended questions to determine problems encountered by spouses of people with stoma. Table 1 included 12 items covering physiological problems experienced by stoma patients’ spouses (eg, loud gas, odor, stoma appearance, complications). Table 2 listed 13 items dealing with daily and work life of spouses of people with stoma (eg, housework, shopping, sleeping). Table 3 included 13 items related to psychological and economic problems encountered by spouses of people with stoma (eg, anxiety, deteriorated family, relationships with relatives and friends, not sleeping in the same bedroom with the spouse, treatment costs). Spouses were asked to state their problems in the first column, write their personal expressions of these problems in the second column, and describe how they resolved these problems in the third column. Data were collected by a researcher through face-to-face interviews that lasted 20 to 30 minutes. The researcher asked the questions and completed the forms.

The interview was held in a quiet room where patients and their spouses could feel comfortable without open entry and exit points. All interviews were conducted by the same researcher. Patients and their spouses were interviewed on the same day but separately.

Data analysis. The data obtained from each patient were coded, entered, and stored into Statistical Packages for Social Sciences (SPSS), version 22.0 (SPSS Inc, Chicago, IL). Frequency and percentage distribution of defining characteristics of people with a stoma and their spouses were divided into 3 categories: spouse’s physical problems, problems with regard to daily life and work life, and psychological and economic problems; these results were tallied. In addition,  answers of spouses to open-ended questions were recorded by the researcher and compared with original answers provided by spouses. All open-ended responses were recorded as provided. The 3 professional experts grouped the open-ended responses and tabulated the results.

Patient demographics. Of the total population of 100, 20 patients did not participate in the study during the data collection period because of conflicting plans (having other appointments) or for unknown reasons. Thus, the sample consisted of 80 people (50 men [62.5%] and 30 women [37.5%]) with a stoma.

Ostomate mean age was 56.53 ± 14.57 (range 29–92) years; 5 (6.2%) participants were higher education graduates, 25 (31.2%) were currently employed, and 55 (68.8%) quit working after the surgery. The monthly income of 40 (50.0%) participants could entirely cover their monthly expenses; 4 patients (5.0%) had less monthly income than expenses.

Of the 80 ostomates, 48 (60.0%) had undergone surgery following a rectal cancer diagnosis, 7 (8.8%) were diagnosed with colon cancer, 6 (7.5%) had inflammatory bowel disease, 5 (6.3%) were diagnosed with ovarian cancer, 4 (5.0%) were diagnosed with fistula, 4 (5.0%) were diagnosed with ileus, 3 (3.8%) were diagnosed with colon perforation, 2 (2.5%) were diagnosed with familial adenomatous polyposis, and 1 (1.3%) was diagnosed with a peritoneal tumor. Twenty-four (24) patients (30.0%) did not receive chemo/radiotherapy after the surgery. Moreover, 58 patients (72.5%) had an ileostomy and 22 (27.5%) had a colostomy; 48 patients (60.0%) had temporary stoma. The stoma care for 62 patients (77.5%) was performed by their spouse.  

Spouse demographics. The mean age of the 80 participant spouses was 54.14 ± 13.63 (range 26–85) years; 50 (62.5%) were women. The mean marriage duration was 29.87 ± 14.52 (range 2–60) years, and the mean number of children was 2.24 ± 1.10 (range 1–6). Thirty (30) spouses (37.5%) were primary school graduates, 56 (70.0%) were not working at the time of this study, 62 (77.5%) had no chronic diseases, and 50 (50.0%) had to take care of their spouse.

Spousal problems. Problems experienced by spouses of people with stoma were divided into 3 groups: physical (eg, bad odor, involuntary gas discharge, peristomal skin complication, stool leakage on the skin, cutting the adapter, stoma’s appearance, changing the bag) (see Table 1), psychosocial, and socioeconomic problems.

Table 1 lists problems experienced by spouses of a stoma patient with regard to stoma care. The problems most frequently experienced by spouses were bad odor (51, 63.7%), loud gas (25, 31.2%), peristomal skin complications (28, 35.0%), cutting the stoma adapter to the size of the ostomy (25, 31.2%), and stoma appearance (23, 28.7%). Spouses experiencing loud gas and odor problems stated “Everywhere stinks” and “It makes me nauseous,” and they explained their ways of handling the problem as “We pay attention to what we eat,” “We do not go out,” and “I am trying not to show my emotions to my spouse.” In terms of solutions, spouses mentioned “Following the stomatherapy nurse’s advice.” One spouse expressed her discomfort with stoma care by stating, “I think it looks like two little cherries” and “I cannot look at it,” and she explained the solution as “We got used to the stoma through loving it.”

Table 2 shows problems of stoma patients’ spouses regarding daily life and work life. The problems most frequently mentioned by spouses were housework (27, 33.7%), gathering with friends and relatives (20, 25.0%), sleep (19, 23.7%), food and drinks (13, 16.2%), and shopping (13, 16.2%). One spouse stated “Everywhere gets dirty due to leakage” and explained her solution as “My daughters-in-law do the housework.” One spouse who was having problems with sleep stated “The stoma bag interrupts our sleep” and explained their solution as “We adjusted our sleep hours according to my spouse.”

Table 3 depicts the psychological and economic problems experienced by spouses. The most frequently mentioned problems were anxiety (26, 32.5%), desperation/pessimism (24, 30.0%), anger/temper (21, 26.3%), not sleeping in the same bedroom with the spouse (20, 25.0%), social isolation (15, 18.8%), and expenses associated with the hospital, diagnosis, treatment, and doctor, among other expenses (17, 21.3%). Spouses experiencing desperation/pessimism stated, “What will his/her future be?” “Why did this happen to us?” “Will she/he be well?”, and they explained their solutions as “I am getting psychological help” and “I console myself by thinking this is God-given.” One spouse who started sleeping in a separate bedroom said the reason was “I am afraid of hurting the stoma in my sleep” and that the solution was “We are not sleeping together for my spouse to be comfortable.” One spouse who had problems with expenses explained their solution was “We are using equipment donated by the firm” (ie, the ostomy supply company).

This study found the defining features of people with a stoma are comparable to those reported in similar studies in the literature.^{6-8,10,16,20-25}
In this study, most spouses of people with a stoma were middle-aged women; 30% of them were high school graduates. These results are congruent with the literature.^14,21,22 For example, the results of the descriptive, cross-sectional study (N = 96) by Cotrim and Pereira²¹ (2008) in Portugal regarding the mean age, gender, and education level of the stoma patient caregivers were comparable to those of women included in the current study.

In the current study, 77.5% of patients with a stoma were cared for by their spouses. This result is similar to that of other Turkish studies. A descriptive, cross-sectional study⁸ in Turkey reported that more than half of stoma caregivers were the patient’s spouse, and a descriptive study (N = 56) by Çakmak et al¹⁰ (2010) reported 33.3% of men with a stoma are cared for by their spouses. A qualitatitve study (N = 30) by Altschuler et al²² found couples reported psychosocial harmony between spouses is positively affected when the spouse is involved in stoma care. Patients reported they did not feel alone and could more easily adapt to their bodily changes if their spouse was involved in stoma care. However, problems arise for both spouses and stoma patients due to the stoma patient requiring a lot of attention after the surgery, and the spouse has to assume the daily responsibilities of ostomy care. A literature review by Terzioğlu²⁶ found disease reshapes a person’s relationship network and changes the course of life, hurting not only its biological host, but also those closest to patient.

In the current study, some problems experienced by spouses of people with a stoma are similar to those previously reported in the literature. In this study, spouses were found to be uncomfortable with bad odor and loud noises, issues also found in the literature. Altschuler et al11 found spouses struggled with performing stoma care and had problems with peristomal skin care and losing their temper. Çakmak et al¹⁰ reported the fundamental problems of people with a permanent stoma were odor and loud gas noise; in a qualitative study by Persson at al²⁰ (2004), spouses of people with a stoma also expressed irritation over a stoma’s odor and loud gas noise. In a qualitative, descriptive study by Ohlsson-Nevo et al¹² (2012) (N = 26) that focused on spouses of patients who underwent colorectal surgery, spouses expressed discomfort with dealing with the complications associated with an ostomy. In the current research, spouses described their struggle with skin problems and stool leakage on the skin as “Leakages happened because of fluid foods and too much activity” and “We experienced problems because the bag kept opening” (see Table 1).

Spouses related several issues with the presence of the stoma. Ohlsson-Nevo et al¹² found spouses considered the stoma a part of their loved one. It is difficult for people to accept and get used to their bodily changes, making it difficult for their spouses as well. Although a sociological review²⁷ identified the fundamental problems experienced by spouses as dealing with foul odor, uncontrolled gas, and the stoma’s appearance and care, some spouses were at peace with these changes and nicknamed the stoma as a coping method. Among the spouses who considered stoma’s appearance as a problem in the current research (28.7%), a few participants referred to the stoma as “two little cherries,” demonstrating they are personalizing the stoma on their spouse’s body. On the other hand, some spouses criticized the appearance of stoma by calling it “a piece of red meat” and “it gets bigger and it looks ugly” (see Table 1). Similar marginalization was shown in a qualitative study by Persson et al.²⁰ For instance, one of the spouses said, “I was terrified and disgusted when I saw that red thing.” Conversely, some spouses stated that they considered the stoma as “a part of the treatment” (see Table 1).

Daily life and work life problems experienced by the spouses of people with a stoma in this study were somewhat similar to those reported in the literature. Çakmak et al¹⁰ determined that male spouses experienced a greater loss of fun activities and traveling than female spouses as the time spent at home increased; conversely, female spouses experienced a greater loss of family visits than male spouses. In a descriptive correlational study²³ of caregivers for cancer patients in the US (N = 10), all caregivers experienced sleeping problems. In the current study, the fundamental daily life and work life problems experienced by spouses were associated with housework, gatherings with relatives and friends, sleep, and shopping. Spouses described these problems as “All housework is on me since my spouse is ill,” “We shop together,” and “I could not go to work because my spouse is on chemotherapy” (see Table 3).

Spouses also experienced psychological and economic problems, identified as anxiety, desperation/pessimism, anger/temper, not sleeping in the same bedroom with the spouse, social isolation, and expenses associated with the hospital, diagnosis, treatment, physician, and other expenses (see Table 3). Some studies have reported that spouses of stoma patients have similar psychological and economic problems. In their descriptive, cross-sectional study, Cotrim and Pereira²⁰ determined that people whose spouses have a stoma due to colorectal cancer experience more depression and anxiety than people whose spouses do not have stoma. In a longitudinal study examining people with colon cancer diagnosis (N = 56 couples) and their spouses in the US, Northouse et al²⁴ (2000) reported women experience more emotional struggles and responsibility-associated problems and need more social support than men.

Kılıç et al⁷ discovered that patient body self-perception was better in persons who had good relationships with their spouses. In the current study, spouses who stopped sleeping in the same bedroom because the patient considered the stoma in their spouse’s body dirty. Spouses explained these ideas as follows: “I do not want to sleep with my spouse because I think it is dirty” and “It stinks” (see Table 3). It also was discovered that spouses are ashamed. Some patients avoid showing their stoma to their spouses, while some spouses state they “do not want to see” the stoma on their spouse’s body. This supports the findings of a qualitative study (N = 8) conducted in Turkey by Karaveli et al²⁵ (2014) in which patients expressed being ashamed of their spouses due to their stoma. Conversely, Altschuler et al¹¹ revealed that for one participant whose spouse had cancer, the healing process was difficult but the bond between them had gotten stronger.

The current study noted that spouses worry about the future, experience deteriorating family communication, and have social struggles as much as stoma patients. However, in a literature review by Öbay et al²⁶ (2011), the importance of sharing disease stories as the first step in healing process was emphasized, underscoring the importance of sharing the disease/surgery experience with close family. Karabulut et al¹⁴ indicated it was important for patients to share experiences with other patients, including their struggle to increase their psychological and social well-being.

Spouses living with a person with a stoma experience as much social isolation as the stoma patients themselves. Excretory system habits, which were once private, become noticeable to other people. The patients thus explain their choice of avoiding society as “We cannot visit other people’s homes” and “Loud gas annoys me and my spouse” (see Table 1). However, talking about this experience is critically important in terms of feelings of reassurance and relaxation, finding solutions, rearranging social identity, and building and maintaining relationships.  

In a prospective study by Ross et al¹⁶ (2007) in Denmark, ambiguity and worries about the future due to a stoma alienated spouses. The current study findings were similar, with some spouses stating they were living in ambiguity and thinking “Will s/he be well?” and “Why did this happen to us?” Further, they stated they have spiritual beliefs and hope for god’s help to heal (see Table 3).

The current study noted that spouses who do not work experience more economic problems. Half of participants defined their economic status as “income and expenses are neck and neck,” and it was determined that 31.2% worked after the surgery and 18.8% quit working after the surgery. Furthermore, 70% of spouses were found to be unemployed; 21.3% were struggling with hospital and treatment costs, and 7.5% were struggling with purchasing stoma equipment. Decrease in income while having major medical expenditures affects family relationships as well. Some spouses described their problems as “Hospital fees are too expensive” and “Equipment is too expensive” and their solution as “We use donated equipment” (see Table 3). All stoma equipment is imported, and the Social Security Institution has constraints in covering all these materials. Patients do not have to pay additional money when they get equipment within the designated timeframe in the exact quantities determined by Republic of Turkey Social Security Institution (ie, a 2-month supply for a colostomy includes 60 stoma bags, 20 stoma adapters, and 2 containers of barrier paste; a 2-month supply for ileostomy patients includes 90 stoma bags, 30 stoma adapters, and 3 containers of barrier paste).²⁸ Therefore, patients with skin complications and persons who need additional products (eg, stoma paste, belt, wound care products) have to pay extra, which becomes an economic burden for patients and their families.

The interpretation of problems experienced by spouses of people with a stoma was limited to spouses’ statements in this study. In addition, findings cannot be generalized due to the small sample group and cultural/religious mandates of this select group.

Stoma surgery can have a negative effect on both the patient and his/her spouse, creating issues with daily life activities and psychological, social, and economic problems. The purpose of this study was to determine problems faced by these spouses and to identify ways couples handle these problems. The study results suggest that consulting sessions to plan education and care for persons with an ostomy should include and address potential spousal problems, with consideration to their cultural context. Future prospective studies are needed to evaluate the effect of different cultural backgrounds on ostomy care.

The authors thank the patients and their spouses who participated and the experts who contributed to the study.

Ms. Turkmenoglu is a wound, ostomy, continence nurse, Turkmenoglu Nursing Services, Koc University Hospital; and Dr. Karadag is Dean, School of Nursing, Koc University, Istanbul, Turkey. Please address correspondence to: Gozde Turkmenoglu, RN, MSN, Davutpasa Cad. No:4 Topkapı/Istanbul, Turkey; email:gt.turkmenoglu@gmail.com.

Potential Conflicts of Interest: This study was presented at the 16th Annual Colon and Rectal Surgery Colorectal Surgery Congress and the 10th Congress of Nursing, Antalya, Turkey, on May 16–20, 2017. The study also was presented as a poster at the 13th annual conference of European Enterostomal Therapists, Berlin, Germany, June 18–27, 2017.