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.