A Prospective, Multicentered Study to Assess Social Adjustment in Patients With an Intestinal Stoma in Turkey

Patients with a stoma undergo physiological, psychological, and social adjustment to their new life situation. A descriptive, prospective study was conducted to assess adaptation among patients >18 years of age with a new temporary or permanent colostomy or ileostomy living in Turkey and receiving care at a participating stomatherapy unit. The study took place between September 1, 2011, and September 1, 2012. During hospitalization and following discharge, patients with a stoma received training and counseling according to their individual characteristics and their physiological, psychological, and social needs. Each participant completed the 19-item  “Identification Form for Patients with a Stoma” at the beginning of the study to document sociodemographic and stoma characteristics. To assess adjustment to the stoma, The Ostomy Assessment Inventory (OAI-23) was administered 2 times — the first within 1 month and the second within 6 months after surgery or when a temporary stoma was closed (whichever came first). This instrument comprised 23 items regarding adaptation to the stoma using Likert-type response options (0–4 range). Total scores ranged from 10 to 92, with higher scores indicating better adjustment. The instruments were completed by stoma and wound care nurses during face-to-face interviews. Data were analyzed using the Kruskal-Wallis, Mann-Whitney, and Wilcoxon tests. Of the 135 participants, the majority (77, 57.0%) were male; 73 (54.1%) had a colostomy, and 106 (78.5%) had a temporary stoma. The primary reason for stoma creation was cancer (89, 65.9%). Mean total OAI-23 scores were 48.63 ± 13.75 at the first administration and 50.59 ± 13.89 for the second. In terms of sociodemographic factors, significant increases in mean scores from the first to the second survey time were noted among patients in the 50–69 age group, women, married persons, and unemployed persons (P <0.05). With regard to stoma characteristics, the OAI-23 scores of patients with planned stoma operations and persons with permanent stomas increased significantly (P <0.05) between assessments. Significant increases in OAI-23 scores also were noted among persons who did not receive information before the operation, patients whose stoma site was not marked, and patients who had experienced a complication (P <0.05). Postoperatively, it is important to consider sociodemographic and stoma characteristics as well as preoperative variables that may influence adaptation to stoma. Additional larger, multicentered studies with extended patient follow-up are warranted.

Stomas are commonly created in the treatment of diseases of the gastrointestinal and urinary systems.^1,2 Even though the creation of a stoma is considered a relatively simple surgical procedure, having an ostomy can adversely affect the lives of patients with a stoma and their relatives.

A significant majority of the 1 million new stomas created annually are due to colorectal cancer.^1-3 According to the literature,⁴ colorectal cancer is the third most common cause of death among males (10%) after lung and prostate cancer and the second among females (9.2%) after lung cancer throughout the world; the number of cases requiring the creation of a stoma exceeds tens of thousands each year. Intestinal stomas also are created to improve the patient’s condition and quality of life in the treatment of various diseases other than cancer, such as acute diverticulitis, rectal trauma, and inflammatory bowel disease.^5-7

According to descriptive studies and literature reviews,^8-10 patients with a stoma experience a range of physiological, psychological, and social difficulties and challenges during the postoperative period. Physiologically, patients with an intestinal stoma encounter changes in defecation habits, lack of defecation control, involuntary gas discharge, odor, dependence on a pouch, complications associated with the stoma and peristomal area, changes in daily living habits, and deterioration in sleeping habits or the sleeping process.

Descriptive and prospective studies and literature reviews^11-15 addressing quality of life, image, sexuality, and living with stoma in patients with a permanent or temporary ostomy have shown the change in physical appearance and problems encountered may cause patients to experience psychological problems such as anxiety, depression, loneliness, thoughts of suicide, and deterioration in body image and self-respect. According to a descriptive, prospective study by Silva et al¹⁶ among 25 patients (18 ileostomy, 7 colostomy; median of 8 weeks since surgery, range 6–16 weeks), stoma care self-efficacy, stoma acceptance, interpersonal relationships, and location of the stoma were strongly associated with adjustment. In Simmons et al’s¹ prospective study among 51 patients who had a stoma for at least 6 months, patients perceived themselves to be socially different from others and were embarrassed by their condition; they deliberately avoided and feared social relations. These studies that investigated problems of stoma patients in the postoperative period also reported patients experienced a deterioration in their relationships due to the change in their body image and the new lifestyle limitations associated with their stoma^{11,12,14,18-21}; these studies also have shown behaviors such as getting together with family and friends less frequently, quitting or changing their jobs, decreasing work hours, and limiting social activities, including traveling and entertaining, can be observed postoperatively in patients with a stoma.

In a descriptive, prospective study conducted by Mahjoubi et al²² among 155 Iranian patients with a stoma and in a qualitative study performed by Karabulut et al²³ investigating the effects of planned group interactions on social adaptation in 50 patients with stoma, it was determined that in order to cope with their problems, patients with a stoma needed to adjust physiologically, psychologically, and socially to their condition, to stoma care, and to a life with a stoma before and after surgery. A descriptive, prospective study by Karadağ et al¹⁹ evaluated the quality of life of 43 patients with a permanent colostomy, and it was determined the physiological problems experienced by patients with a stoma can be reduced substantially through appropriate care, training, and counseling provided in a hospital setting by stoma and wound care nurses. However, these studies also noted that psychological, social, and sexual problems can continue to persist in certain stoma patients. Understanding and assessing the psychosocial issues or problems ostomates face is important for the provision of appropriate interventions to decrease difficulties adjusting to the stoma.

Stoma and wound care nurses play an important role in assessing and facilitating the adjustment process of patients with a stoma.^20,23 Assessing the individual’s adaption to living with a stoma and specific factors influencing adjustment is crucial to nurses fulfilling these responsibilities comprehensively and accurately. Even though many studies on identifying problems experienced by stoma patients have been published,^{9,10,12,13,21} research into what determines a patient’s level of adjustment to the stoma and ways to enhance adjustment remain limited.^17,23,24

In Turkey, few studies have been conducted thus far assessing patients’ adjustment to their stomas. Karabulut et al’s²³ quasi-experimental investigation found 6-week, planned group interactions (ie, interactions conducted among several individuals with a stoma focusing on adjustment to and living with stoma) effectively enhanced the social adjustment of patients with a stoma.

The purpose of this descriptive, prospective study was to assess variables that may affect adaptation of patients living with a colostomy or ileostomy within the first 6 months following surgery. In this study, the participants’ sociodemographic properties and stoma-related attributes were investigated. 

Study sample and design. The study sample included patients with a stoma that accepted an invitation to participate in the research and who were monitored in the stomatherapy units of 7 hospitals in Turkey that 1) maintained the necessary patient records and 2) employed stoma and wound care nurses. Meetings were conducted with the stomatherapy units to introduce the study, and the study procedures were reiterated at the units that agreed to participate. Inclusion criteria stipulated participants: 1) had a colostomy or ileostomy created between September 1, 2011 and September 1, 2012; 2) were at least 18 years of age; and 3) had voluntarily agreed to participate in the study.

Study instruments.

Identification Form for Patients with a Stoma. Investigators developed a 19-item instrument based on a review of the literature.^12,16,25 The form consists of 2 main sections: 10 questions on sociodemographic characteristics of the patients (including age, gender, marital status, educational status, and level of income) and 9 questions on the individual’s stoma type, reason for stoma creation, length of time with the stoma, stoma care, and status of complication development.

Ostomy Adjustment Inventory-23 (OAI-23). This self-evaluation scale, composed of 23 items across 4 subfactors, was developed by Simmons et al²⁶ to determine levels of adaption among patients with stomas. Each item is evaluated on a Likert-type scale with a score range of 0–4, with a higher score indicating better adaptation. Total adjustment scores range from 10 to 92. Twelve (12) items on the scale (items 2, 5, 7, 8, 10, 11, 12, 13, 16, 17, 18, and 21) present respondents with negative sentences and are reverse scored (see Figure 1). In a study of the scale’s validity and reliability with 570 stoma patients, the OAI-23’s Cronbach’s  was found to be 0.93 and its test-retest correlation coefficient (r) was 0.83.²⁶

This scale was translated to Turkish by Karadag et al.²⁷ The validity and reliability of the scale were measured in a Turkish sample of stoma patients,²⁷ and the test-retest correlation coefficient (r) was 0.76.

Study procedure. All units were under the leadership of Turkish Association of Wound Ostomy Incontinence Nurses; each unit is owned by a different hospital in Turkey. The Association provided written permission to conduct the research, and patients provided verbal consent to participate. During hospitalization and following discharge, patients with a stoma were provided training and counseling according to their individual characteristics and their physiological, psychological, and social needs by stoma and wound care nurses. Each participant was evaluated once with the Identification Form for Patients with a Stoma at the beginning of the study. The OAI-23 was administered twice to assess adjustment in participants: the first time within 1 month of the stoma operation and the second time within 6 months of stoma creation or immediately before the stoma was closed in persons with a temporary stoma. Study data were collected through face-to-face interviews with patients by stoma and wound care nurses working in participating hospitals; these patients had received periodic training, care, and consultancy services from these nurses at the hospitals where they were monitored. Stoma and wound care nurses read the questions on the data collection forms; patient answers were recorded in the forms and all data forms were mailed to the principle researcher for statistical analysis.

Data analysis. The data obtained in the study were analyzed using SPSS for Windows, Version 20.0 (SPSS Inc, Chicago, IL, USA). Number and percentile calculations and Kruskal-Wallis, Mann-Whitney, and Wilcoxon tests were performed. The Kruskal-Wallis test and the Mann-Whitney U-test were used to compare the differences between the patients’ mean adjustment scores according to their sociodemographic characteristics and the characteristics of their stoma during the time of the first and second assessments. The Wilcoxon test was used to compare the differences between the patients’ mean adjustment scores according to their sociodemographic characteristics and the characteristics of their stoma at the 2 different assessment times. 

One hundred, thirty-five (135) patients (mean age 51.56 ± 15.49 years, 77 [57.0%] male) agreed to participate. One hundred, six (106, 78.5%) were married, 49 (36.3%) were primary school graduates, 45 (33.3%) were secondary school graduates, 21 (15.6%) were university graduates; and 78 (57.8%) were not working. More than half (74, 54.8%) perceived they were in the middle income range,  and the majority (124, 91.9%) lived with their families (see Table 1).

Eighty-nine (89, 65.9%) had a stoma created due to cancer. The majority of stomas created were colostomies (73, 54.1%). One hundred, six patients (106, 78.5%) had a temporary stoma. Stomas were created in a planned (nonemergent) manner for 104 patients (77%), 123 (91.1%) received information from a stoma and wound care nurse or surgeon before stoma surgery, and 86 (63.7%) had their stoma site marked by a stoma and wound care nurse. A little more than half (68, 50.4%) of study participants did not care for their stoma by themselves. The majority (115, 85.2%) did not experience stomal or peristomal complications (see Table 2).

The average OAI-23 scores were 48.63 ± 13.75 for the first round and 50.59 ± 13.89 for the second assessment. Although the mean scores of patients increased, the difference in scores was not statistically significant (P >0.05) (see Table 3).

When mean scores on the inventory were examined in relation to the participants’ sociodemographic characteristics, the average scores of patients in the 50–69 age group, women, those who were married, and those who were unemployed were found to increase significantly over time (P <0.05).

No statistically significant differences were observed in the adjustment inventory scores of the patients according to their education level, income level, and the persons they lived with (P >0.05) (see Table 4).

The OAI-23 scores of patients with planned stoma operations increased from 48.12 ± 13.43 to 50.73 ± 13.96 and with permanent stomas from 49.10 ± 15.48 to 56.04 ± 10.54 (P <0.05). After the second OAI-23 administration, the mean scores of patients with a permanent stoma (56.04 ± 10.54) were significantly higher than those of patients with a temporary stoma (49.38 ± 14.29) (P <0.05; see Table 4). The average scores of patients who did and did not receive information before stoma surgery increased from 48.99 ± 14.09 to 50.58 ± 14.42 and from 45.30 ± 9.69 to 50.66 ± 7.95, respectively; however, only the increases among persons who did not receive information before the operation were significant. Likewise, only OAI-23 mean scores in patients whose stoma site was not marked increased significantly over time (from 47.10 ± 12.28 to 52.93 ± 16.65; P <0.05) (see Table 4).

At the first questionnaire administration, the scores of patients who experienced stomal or peristomal complications were lower than patients who had not experienced complications; however, increases in adjustment scores in the second evaluation were more pronounced for patients who had experienced a complication (P <0.05) (see Table 4a,b).

Mean scores of participants on the OAI-23. In this study that aimed to assess the social adjustment of 135 patients with a stoma, the mean scores for the OAI-23 and its subdimensions demonstrated only limited change over the short study period. This finding is consistent with that of several studies assessing adjustment in stoma patients. In Cheng et al’s²⁸ interventional study in which 92 colostomy patients were provided an Expert Patient Program (EPP) for 3 weeks, the mean adjustment inventory score increased from 47.59 before program participation to 53.37 after completing the program. The EPP included knowledge, stoma care self-efficacy, self-management, and psychosocial adjustment in patients who had a permanent colostomy. In a qualitative study performed in patients with stoma (N = 50) by Karabulut et al,²³ the mean OAI-23 of patients in the study group was lower before planned group interactions for 6 weeks of sessions designed to enhance the adjustment to and living with a stoma in ostomy patients (53.04) and gradually increased following group meetings (70.91); however, no significant changes were noted in the scores of persons in the control group, whose averages were 51.07 and 53.07 at first and second evaluation, respectively.

Several previous investigations have reported high adjustment scores among patients with a stoma. Simmons et al²⁶ randomly selected 570 persons with a colostomy, ileostomy, or urostomy with complete records from 3 national databases and found their mean adjustment score was 63.81. In a descriptive, experimental study by Martin,²⁹ the adjustment scores of 20 patients (12 experimental group, 8 control group) with recent stomas in the sixth and eighth postoperative weeks were 82.42 in the experimental group and 78.58 in the control group. In their review article on ostomies in cancer patients, Hurny and Holland³⁰ observed stomas led to anxiety and made it more difficult for patients to adapt to their new lives, thus extending their adjustment process and period. Adjusting to an ostomy is affective (ie, requires changes in the individual’s interest, attitude and emotions toward living with stoma); a slow, gradual progression over time is expected. Moreover, many factors influence adjustment to a stoma. Within this context, the adjustment of patients with a stoma can be expected to vary according to these different variables.

Participants’ sociodemographic attributes.

Age. Sociodemographic variables such as age, gender, education, and occupation have been found to influence adjustment to a stoma.^12,31 The current study demonstrated the mean adjustment scores of patients 29 years old or younger decreased over time, while scores of patients in the 30–69 age group increased. In a cross-sectional study by Piwonka and Merino³¹ that studied the influence of age on social adjustment among 60 patients with a stoma, the most salient factors affecting adjustment to a stoma in patients under 62 years were the amount of time since the operation, body image, social support, and a low number of postoperative complications. The most relevant factors for patients 62 years of age and older were being able to take care of the stoma and body image. Many external factors are thought to influence adjustment in young and middle-aged patients, but as patients get older, external factors influencing adjustment have been known to decrease, with only the status of the disease and being able to assume care remaining important.²³

Gender. In this study, the adjustment scores in the first OAI-23 assessment were lower in women than men; however, in the second assessment, the men’s scores remained unchanged, while women’s gradually increased and the difference between adjustment scores was statistically significant (P = 0.002). In a descriptive study by Karadağ and Baykara³² on 126 patients with a stoma, 35.7% of women and 58.4% of men reported the stoma made them dependent or semidependent (P <0.05) on others. Thus, the findings regarding the faster rate of adjustment to the stoma in women, relative to men, were expected.

Education and income status. Although mean scores increased over time depending on patient level of education and income and living status (ie, alone or with parents), the differences were not statistically significant (P >0.05) (see Table 4). When these factors were examined in relation to patient characteristics associated with the stoma, adjustment scores did not appear to change according to stoma type, although they increased over time, if not significantly (P >0.05) (see Table 4).

Working status. In the current study, the initial OAI-23 scores of unemployed patients were significantly lower than those of employed patients. These scores increased significantly in subsequent evaluation of adjustment (P <0.05). From these results, the authors inferred unemployed patients may have a tendency to constantly focus on their ostomy and hence may require a longer period to effectively adjust to their stoma

Marital status. Current results indicated significant improvements in adjustment among married patients over time. Support from one’s partner has been identified as being a contributing factor to adjustment.²⁴ Social support provided by an individual’s family, children, or friends also had a positive influence on adjustment.³¹ In a descriptive study (N = 30), Altschuler et al³³ found performing care together with one’s partner has a positive impact on psychosocial adjustment. Having a stoma presents a social issue that influences not only patients with the stoma, but also their partners, families, and close circles. Support from a partner is highly important to an individual’s adjustment to a stoma.

Stoma-related attributes.

Preoperative preparation. The study found the initial mean adjustment scores of patients who were informed of the stoma operation and whose stoma site was marked were higher than those of patients who were not informed of the surgery and whose stoma site was not marked before surgery. Additionally, the current study reported adjustment in patients who underwent a planned operation and in persons who were not informed of the operation increased significantly with time (P <0.05). In a clinical study conducted by Person et al³⁴ on 105 patients with a stoma (60 men, 45 women), quality of life and independence increased over time among patients whose stoma site was marked and their complications decreased significantly over time. Educating patients during the preoperative and postoperative stages of life about the stoma and its care and marking the site before surgery appears to facilitate acceptance of the stoma and adjustment to the postoperative process.

In a multicenter, retrospective, descriptive study (N = 748) conducted by Baykara et al³⁵ involving individuals who underwent stoma site marking, the rates of peristomal complications were found to be significantly lower compared to individuals with no preoperative stoma site marking. The current authors believe stoma site marking will directly and indirectly increase adaptation. Thus, the low OAI-23 scores of patients whose stoma site was not marked before the operation was an expected finding.

Stoma type. The mean inventory scores of patients with a permanent stoma in the first and second evaluations were higher than those of patients with a temporary stoma (P <0.05). According to Karabulut et al,²³ patients with a permanent stoma may make an effort to adjust more quickly because they know they will be experiencing this condition for the rest of their lives, whereas patients with a temporary stoma — aware the condition is temporary and the stoma will be closed — may not feel the need to adjust as urgently. As such, decreases in the OAI-23 scores from first to second measurement were anticipated. The literature^26,31 notes characteristics of the stoma such as stoma duration, stoma type, and nature (ie, temporary or permanent) are among the variables most likely to affect adjustment. In Wade’s²⁴ study on patients with colostomies, the incidence of depression was higher in patients with a temporary stoma (13%) compared to patients with a permanent stoma (6%). The authors believe the large majority (78.5%) of individuals with a temporary stoma in the current study might have negatively affected the mean OAI-23 score.

Stomal problems. Approximately 14.8% of the stoma patients in the study experienced stomal/peristomal complications (see Table 2). The rate of stomal/peristomal complications was measured at 32.8%, 35%, 24.1%, and 48%, respectively, in a retrospective descriptive study by Karadağ³⁶ (N =128), a prospective, descriptive study by Ratliff et al³⁷ (N = 220), a retrospective, descriptive study by Akçam et al³⁸ (N = 120), and a retrospective study by Özaydın et al³⁹ (N = 96). Stoma complications have been known to vary between 10% and 70%.³ In the current short-term study, although patients who experienced stomal and peristomal complications scored comparatively low on the OAI-23 first measurement, they showed marked improvements in adjustment when assessed at a subsequent point in time (second measurement). Descriptive, prospective studies^6,40 in the literature demonstrated stomal and peristomal complications adversely impact adjustment to and living with the stoma.

Among patients experiencing stomal/peristomal complications in the current study, persons whose stoma care was performed by someone else scored the lowest on the OAI-23 initially (43.31). However, their scores increased significantly by the final assessment (55.68; P <0.05). Previous research^26,31 shows many factors (such as status of performing stoma care, body image perception, amount of social support, the period following the surgery) influence the extent to which patients are able to adapt to the stoma. In their 4-year longitudinal study of 59 stoma patients and 64 bowel-resected nonstoma patients, Bekkers et al⁴¹ observed adjustment scores and the provision of stoma care were significantly affected by the occurrence of stoma-related complications within the 4 months following the creation of the stoma. In cases where no complications were observed, adjustment to the stoma was reported to take 2 years or longer, which could be extended by complications.

As these results and the literature demonstrate, many factors potentially enhance or inhibit adjustment among patients with a stoma. Furthermore, the relationships among these various factors significantly influence adjustment to the stoma. At times, many different factors can simultaneously influence a contributing factor. Given this information, an individual’s adjustment to the stoma may be influenced by the sum of his or her experiences rather than a single determinant.

The main limitations of the present study were its relatively small sample size and short monitoring period of adjustment (6 months) — the authors were not able to observe the long-term adjustment of patients with a stoma. Therefore, the generalizability of the results obtained may be limited.

he results of this study suggest patients start adjusting to living with an intestinal stoma after surgery. Many factors, such as preoperative information, the ability to perform care, and countermeasures against stomal and peristomal complications, influence adjustment.

It is also essential for training and supportive services to be individually tailored to patients according to their characteristics and physiological, psychological, and social needs. Stoma care nurses should be alert to risk factors for less-than-optimal adjustment. For example, in this study, it was determined that factors such as age, gender, marital status, working status, chemotherapy/radiotherapy applications, planned/emergent operation, being informed before the operation, stoma site marking, complications, stoma care, and temporary/permanent stoma had a statistically significant effect on the OAI-23 score. It also was determined that the educational status and income level did not have an effect on the OAI-23 score.

Multicentered studies with larger populations should be conducted. Ostomy patients should be monitored in the postoperative 6 months, 1 year, and for longer periods to assess social adjustment.

Dr. A. Karadağ is Professor, School of Nursing, Koç University, İstanbul, Turkey. Dr. Karabulut is Assistant Professor, Department of Nursing, Faculty of Health Science, Nuh Naci Yazgan University, Kayseri, Turkey. Dr. Baykara is a lecturer, Department of Nursing, Faculty of Health Science, Gazi University, Ankara, Turkey. Dr. Harputlu is a lecturer, Department of Nursing, Faculty of Health Science, İzmir University of Economics,  İzmir, Turkey. Ms. Toyluk is a Stomatherapy Unit Enterostomal Therapy Nurse, Istanbul University Cerrahpasa Hospital, Istanbul, Turkey. Ms. Ulusoy is a Stomatherapy Unit Enterostomal Therapy Nurse, Uludag University Hospital, Bursa, Turkey. Ms. S. Karadağ is a Stomatherapy Unit Enterostomal Therapy Nurse, Turkey High Specialization Education and Research Hospital, Ankara, Turkey. Ms. Kahraman is a Stomatherapy Unit Enterostomal Therapy Nurse, Ege University Hospital, Izmir, Turkey. Ms. Hin is a Stomatherapy Unit Enterostomal Therapy Nurse, Gazi University Hospital, Ankara, Turkey. Ms. Altinsoy is a Stomatherapy Unit Enterostomal Therapy Nurse, Istanbul University Capa Hospital, Istanbul, Turkey. Ms. Akil is a Stomatherapy Unit Enterostomal Therapy Nurse, Çukurova University Hospital, Adana, Turkey. Dr. Leventoğlu is an Associate Professor, Gazi University Faculty of Medicine, Department of Surgery, Colorectal Cancer Surgery. Please address correspondence to: Zehra G. Baykara, RN, PhD, Gazi Universitesi Sağlık Bilimleri Fakültesi Hemşirelik Bölümü, Emniyet Mah, Muammer Yaşar Bostancı Cad, No: 16, PK: 06500 Beşevler/Ankara, Turkey; email: gocmenzehra@yahoo.com.