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Enfermería Global

versión On-line ISSN 1695-6141

Enferm. glob. vol.17 no.50 Murcia abr. 2018  Epub 14-Dic-2020 


Conjugal coexistence with an ostomized partner and its social and affective implications: a comparative case control study

Ana Lúcia da Silva1  , Ivone Kamada2  , João Batista de Sousa3  , André Luiz Vianna3  , Paulo Gonçalves de Oliveira3 

1 MD, PhD, Profesor Adjunto, Departamento de Enfermería, Universidad de Brasilia, Brasil.

2 MD, PhD, Professor Asociado, Departamento de Enfermería, Universidad de Brasilia, Brasil.

3 MD, PhD, Profesor Asociado, Departamento de Cirugía, Universidad de Brasilia, Brasil.


The evaluation of the ostomy problem and its social and emotional implications on the conjugal life with a partner with colostomy is the starting point of this study. The condition of a person with a permanent ostomy can influence social and daily activities with their spouses.


To analyze the social and affective aspects of daily coexistence of the spouse and his partner with a definite intestinal ostomy.


Comparative study of case control type of quantitative nature, conducted with spouses of ostomized patients paired to the non ostomized in the Federal District, Brazil. The study included 108 spouses of whom 36 spouses of the ostomized called the Case Group and 72 of the non ostomized entitled Control Group. The data was collected from October 2011 to June 2012.


The results show that the case group when compared to the control group presented a lower frequency to restaurants, collective events and participates less in leisure activities. In regard to the habits of practicing physical activities, the perception concerning stability in marital coexistence and the evaluation of affective relation, similar rates were observed in both groups.


The spouse and his ostomized partner suffered from changes in daily conviviality and the affective bonds of the couple remained unchanged.

Keywords: spouses; ostomy; social perception; comparative study


The most frequent cause for the confection of the intestinal ostomy is the colorectal cancer1. This represents a traumatic fact in the life of the person, be it for the stigma that cancer brings death, suffering, pain and fear, be it by treatment which most of the times is aggressive. The physical and psychological changes are inevitable, the interruption of future plans as well as the financial concerns that consequently modify the dynamic life of a person right from his or her daily routine till family and conjugal structure.

In the face of body image changes, the ostomized person tends to feel stigmatized by judging himself different or for not presenting the characteristics and the physical attributes considered normal by the society. Generally, the ostomized person prefers social isolation which compromises his activities of leisure and recreation. Avoids going to public places such as restaurants, churches, parties and others. When there is a need to have a meal outside the home, he is concerned to sit far from other people in the establishment, in the farthest place and at times, less frequented by others2. Reasons for such behavior are imaginable because there is no sphincter control and it is subject to elimination of gases and feces unintentionally.

Family and social support is relevant in the improvement of self-esteem and social reintegration of ostomized patients3. However, the family members feel vulnerable when faced with the unknown universe of social family life which they should face after the ostomy of their loved one3. In the family convivial, the ostomized people feel distressed when they realize that their condition brings suffering to their loved ones, but at the same time feel contented and comforted by having them by their side1.

The lifestyle of marital cohabitation of a spouse and a partner with intestinal ostomy should be perceived as a predominant factor in the re adaptation to this new condition of life. An ostomized person has difficulty in relating with the spouse in a natural way, by imagining it difficult for the other person to remain close, participate together in social activities and share the same bed, due to the possibility of exhaling unpleasant odors, eruption of feces on clothing among other common situations in the life of the ostomized person2.

A study that evaluated the quality of life of the spouses whose partners had colostomy concluded that living with a permanent ostomy does not only affect the patient, but also affects the spouse in respect to physical, social, psychological aspects and in the lifestyle4. However, in a systematic review study, it was detected that there is need of orientation and educational activities for the spouses of the ostomized because in the current clinical practice they are still neglected5.

In literature, there are a few studies that make reference to social and affective aspects of the spouses of ostomized patients. There is greater focus in relation to the theme of sexuality of the ostomized and his spouse 6,7.

The presence of the stoma influences the life of the spouses in several ways, but together with their partners, they face the problems and help them adapt to their new circumstances8. However, in the same study, the spouses expressed the feeling of much solitude because people around them only demonstrated interest in their ostomized partner and they forgot that the disease had an effect on the whole family8. Thus, emerges the necessity to evaluate the experience of the spouse in contraposition to the presence of intestinal ostomy of his partner, mainly in the social and affective repercussions.

The spouse is the closest person to the ostomized partner; therefore, he can be considered a care provider that is present in coping with the disease, in treatment maintenance and in learning about the handling of the collecting equipment, accessories, among other tasks arising from an intestinal ostomy. Therefore, the marital cohabitation with the ostomized person requires the spouse to embrace many measures of adaptation and readjustment to daily activities. However, little is known of the implications which are levied on the spouse of the person with permanent intestinal stoma.

The present study had as an objective to analyze the social and affective aspects of daily coexistence of the couple, in the perception of the spouse of a person with a permanent stoma.


This is a comparative study of case control type of a quantitative nature carried out with spouses of ostomized patients paired to spouses of non ostomized. For the constitution of the groups, artificial type of pairing was performed. For each ostomized spouse interviewed, two spouses of the non ostomized were selected. In this study, the partners or companions were denominated spouses regardless of the marital status.

To eliminate the confounding factors, the participants of this research were paired according to the variables that could influence the daily coexistence of spouses: age, gender, level of education, monthly family income and time of marital cohabitation.

The criteria for the composition of the sample were the following: accepting to participate in the study, age equal to or higher than 18 years, spoken and written fluency in Portuguese language, absence of incapacitating disease. For spouses of the non ostomized, the requirement was marital cohabitation for at least one year and for the spouses of the ostomized , was at least one year before and one year after the confection of a stoma with a permanent character. Another aspect that was considered was that the partners of ostomy patients were free from clinical signs of the disease and without treatment at the time of data collection so that there would be no interference in the analysis of the social and affective aspects of the couple.

The spouses of the ostomized were selected from the members of the Nucleus of Basic Attention and of the ostomized, of the Department of Health of the Federal District (DF). For the constitution of the control group, people living in DF with equivalence in the variables studied that met the requirements of pairing were invited.

The study included a convenience sample consisting of 36 spouses of ostomized people and 72 spouses of non ostomized. Data collection was carried out from October 2011 to June 2012, by means of a self-administered instrument and filled out in an autonomous manner by the spouse, without the presence of any other person, with the researcher being near the location in case there was need for some clarification.

A specific instrument was elaborated for the present study by the authors, from the experience of over 20 years providing care to ostomized people. Consequently, the questionnaire was reviewed by five judges, researchers in the areas of methodological knowledge, linguistic and health. The validation was done with the application to 5 spouses of ostomized people and 10 non ostomized spouses with the objective of assessing the adequacy of the questions; whether they were sufficiently clear so that they could be answered with certainty and without a margin for double understanding. After prior analysis, the instrument applied in the research was composed.

The questionnaire was composed of two parts: socio demographic and social and affective aspects. For the characterization of socio demographic aspects data about age, gender, level of education, family income, marital status, time of marital union and place of birth were analyzed. In the social and affective aspects, evaluated variables were: habits of frequenting restaurants, participation in collective events, leisure activities, the reactions of the spouse toward the behavior of the partner to be isolated, interest in leaving home, the habit of practicing physical activity, the perception of the spouse about the physical appearance of the partner and the situation of the conjugal union. In the analysis of the social and affective aspects, the confection of the stoma was taken as reference for the case group, and to the control group, the beginning of the marital union.

The results were analyzed with the aid of the software Statistical Package for Social Sciences (SPSS) 20.0 for windows. Descriptive statistical analysis was performed and for comparison of the variables, the Pearson chi-square test was applied. The level of significance was determined as p<0.05.

Study linked to the project "Marital coexistence with the ostomized person and its social, psychic and sexual implications" approved by the Ethics Committee in Research under the protocol number CEP-FM 011/2009 and all participants signed the Free and Informed Consent.


The sample was composed of 108 individuals, 36 being spouses of ostomized individuals denominated as case group and 72 spouses of non ostomized people denominated as the control group. Table 1 illustrates the distribution of frequencies by age and sex of participants in the case and control groups.

Table 1 Distribution according to age and sex, Brasília, DF, Brazil, 2012. (n= 108). 

In relation to family income, a greater proportion, 52.8% in the case group and 45.7% in the control group, had an annual income above US $ 20, 000. There was no significant differences between the ranges of income of up to US$ 4,000, between 4, 000 and 8,000 and 20, 000 dollars (p>0.05)

Table 2 Spouses distribution group second and according to the social aspects. Brasília, DF, 2012. (n= 108). 

Regarding the time of a stable union in the case group 35/36 (97.2%) of individuals and in the control group 64/72 (90.2%) had more than 5 years of union (p>0.05). In the distribution of the place of birth, the participants of the case group, 13 (36%) were from the Northeast, 11 (30%) from the Midwest, 9 (25%) from the Southeast and 2 (5.6%) were each from the Northern and Southern region. The control group, 17 (23.6%) were from the Northeast, 33 (45.9%) from the Midwest, 16 (22.2%) of the Southeast and 2 (2.8%) were each from the Northern and Southern region. The partners of the spouses participating in this study all had permanent intestinal ostomy and the duration of the ostomy ranged from one year to more than five years.

The results of the parts of the variables concerning the social conviviality are described in Table 2. No significant difference was observed between the two groups studied (p>0.05).

The reaction portrayed by the spouse about the preference of the partner to isolated places was 28 (77.8%) of the case group and 54 (75.1%) of the control group stated that they respect the wish of their respective partners. Others reacted with indifference, 5 (13.9%) of the case group and 12 (16.7%) in the control group. The rest did not reply to the questions. There was no statistically significant difference (p=0.124)

About the view of the spouse in regard to the interest of the partner in leaving home, the case group, 25 (69.4%) kept the interest and 11 (30.6%) changed the interest. The control group 36 (50%) maintained the interest in leaving home and 36 (50%) changed the interest in leaving home. There was no significant difference (p=156).

As to the possible changes in the habits of the spouse about the practice of physical activities, in the case group 25 (69.4%) did not change their habits, 6 (16.7%) partially changed their habits and 5 (13.9%) completely changed their habits in practicing physical activities. In the control group 48 (66.7%) did not change their habits, 15 (20.8%) partially changed their habits and 9 (12.5%) completely changed their habits about the practice of physical activities. There was no statistically significant difference (p=0.870). It is understood by the partial shift, one in which there was only change of the routine and by total change to complete cessation of the practice of physical activities.

In terms of personal assessment of the physical appearance of their respective partner, the data is described in Table 3. (p=0.086).

Table 3 Distribution according to the assessment of the physical appearance of the partners of respondents, Brasília, DF, Brazil, 2012. (n= 108). 

Regarding the affective aspects concerning possible changes in the relationship of the spouse, in the case group 23 (63.9%) affirmed that there was no change and 13 (36.1%) affirmed that there had been changes in conjugal life. In the control group, 37 (51.4%) stated that there was no change and 35 (48.6%) stated that there had been changes in conjugal life. There was no significant difference (p=0.332).

In relation to the conjugal union, in the case group 30 (83.3%) stated that there were no risks of separation and 6 (16.7%) stated there were risks. In the control group, 61 (84.7%) stated that there were no risks of separation and 11 (15.3%) stated that there were risks of separation. There was no significant difference (p=0.471).


The execution of this study by application of a questionnaire of quantitative nature, enabled to assess conjugal life with an ostomized partner and its social and affective implications.

In relation to the age of the interviewees, it was observed that the majority were in the age range of 31 to 60 years. Therefore, it can be inferred that ostomized people here represented by their spouses are also in this age group, which differs from previous studies that found the majority of ostomy patients aged over 60 years 9,10.

In relation to sex, it showed that a large part of the group investigated was feminine. Also, a majority had higher educational level and more than five years of stable union.

Regarding the level of education, higher education level presented a higher proportion in the case group, while the control group had a higher proportion in high school level, though without significant difference. In this study, the predominance of higher education calls for attention, a result contrary to the studies of other authors who detected in their results the majority of participants as having primary education4,7,9. The highest level of education can facilitate the understanding of the disease and handling of the stoma and still influence in the financial condition of the partners.

The average family income in the two groups was above five minimum wages for the majority of the interviewees, which represents approximately 20, 000 dollars annually. In both groups the marital cohabitation of the majority was more than five years. This result is consistent with that of another study which concluded that the spouses who had a stable union before the surgery, the tendency was to maintain the union. Those who did not have a solid relationship inclined to staying alone after the ostomy2. Regarding the origin of the participants, it was found that they came from five regions of the country, in both groups a majority being from the Northeast and Midwest regions, which is understandable given the geographical location of where the study was conducted.

In the identification of social aspects related to habits of frequenting restaurants in the company of the partner, it was evidenced that the spouses of the ostomized frequent restaurants less in comparison to the spouses of the non ostomized although there was no significant difference between the groups. Nonetheless, when compared with those who often or rarely go, it can be seen that most couples of the case group frequent restaurants. Thus, despite the ostomy, the couple continues to go to restaurants. These results can suggest that the ostomy does not influence the habit of going to restaurants for the spouses of the ostomized. Nonetheless, in the category “do not regularly frequent a restaurant”, it was observed that, in the case group, almost 20% do not have the habit of going to a restaurant.

Other authors have stated that the ostomized leave off having meals in restaurants and other public places due to the possible embarrassment caused by elimination of gas, feces, noises and unpleasant odors in meal environments with a tendency to social isolation2. In this case, if the ostomized feels stigmatized and has fear of being socially rejected, this condition may be reflected in the behavior of the spouse and consequently contribute to the reduction of the frequency of participation in social activities such as going to restaurants.

In this sense, the literature confirms the fear of the ostomized to feed in public which causes reduction of pleasure in eating and leads to isolation or social exclusion. In this manner, it is not clear in this study if the spouse of the ostomized has a lower frequency in the habit of going to a restaurant in the company of his partner, in comparison to the control group, by free and spontaneous desire or because this is the will of the ostomized companion. It is worth highlighting that the spouse smells the unpleasant odor of the partner’s intestinal ostomy and the changes imposed on the ostomized person is a situation shared between the couple that maintains the condition in secrecy11.

Regarding the participation of spouses in collective events defined as music festivals, concerts, theater, cinema and sporting competitions, it was observed that the spouses of the case group participate less in comparison with the control group. Following the previous reasoning, to compare those who show up often or rarely, it is observed that a majority of the case group also show up in collective events with a percentage approximating that of the control group in the same categories.

In this case it is evident that the spouses of the ostomized show up in collective events, inferring that the stoma does not interfere in this activity. However, we cannot fail to mention that 33.3% of the case group never attend collective events. It leaves doubt if such a reduction of the frequency in social activities of spouses of the ostomized occurs due to the stoma of the companion. There has to be a reflection on a record in a previous study that half of the ostomates do not resume their leisure activities or only participate partially in collective events due to insecurity with the quality of equipment collectors, physical problems, difficulties to sanitize and fear of gastrointestinal problems12. If the ostomized person isolates and excludes himself from the society, the spouse is the person who is most likely to be affected by these changes4.

In relation to the habit of the spouse going out with the partner, it was evaluated the participation of the couple in leisure activities such as dancing, watching sports games (mainly soccer), barbecue and going to clubs. In this study, leisure or recreation was seen as part of the daily routine and was orientated to personal satisfaction and socialization. This way, it was verified that the case group participates less in leisure activities when compared to the control group. But, when comparing those spouses who participated in leisure activities, even in low frequency, it was observed that it was a majority in both groups.

This result suggests that the stoma is no reason for the spouses of the ostomized to cease to participate in leisure activities. Nevertheless, 25% of the spouses of the ostomates never participated in these activities, the same occurring with 16.6% of the control group. There are no indications that the percentage differences relating to leisure are consequences of little socialization, but the data indicate that the apathy observed in couples of the case group can be as a result of the stoma. However, researchers emphasize that the person stomized has difficulty adapting their leisure and physical activities 13. A previous study showed that more that 70% of the spouses had a reduction in social activities of entertainment after their partner was colostomized4.

As to the opinion of the spouse in regard to the behavior of the ostomized partner in preferring a peaceful environment, isolated and being distant from other people, it was inquired what their reaction was and compared to the spouses of the control group. The replies of the two groups were identical in their majority in affirming that they respect the will of their respective companions. This assumes that the choice of location is not determined by the ostomy, but by the respect of the will of their companion and that can perhaps be a common behavior between couples regardless of their condition of health.

Regarding the habit of practicing physical activities and recreation such as gymnastics, walking, biking, swimming, water aerobics, yoga, dance, soccer and volleyball, it was observed that the majority in both groups reported that there was no change in the practice of physical activity, being that the spouse of the ostomized presented a slightly higher frequency to the spouse of the non ostomized. Concerning the partial and total change in the practice of physical activities, the spouse of the ostomized presented greater percentage when compared to the spouse of the non ostomized. In this way, the habit of practicing physical activities or not has other reasons not influenced by intestinal ostomy of the partner.

In the present study the perception of the spouse about the interest of the companion in leaving home was evaluated. For the case group, the presence of intestinal ostomy was taken as reference and for the control group the beginning of conjugal life. Thus, in both groups, the majority of their partners maintained the interest of leaving home. The case group presented a higher frequency on the maintenance of interest in leaving home and lower rate of changes when compared to the control group. Thus, these findings suggest that the intestinal ostomy does not interfere in the interest of the partner in leaving home; there are other reasons that were not identified. Previous studies suggest that with the passing of time an ostomized person tries to get out of isolation and overcome discrimination and manages to live with the colostomy in a healthy way and gets inserted in social activities2,14.

As to the personal evaluation of the physical appearance of the respective partner of the interviewee, a majority in the two groups claimed that there were no changes. The case group presented a greater percentage (61%) when compared to the control group (45.8%), contradicting the expectations of common sense. Aktas and Baykara 15 stated in their study that the confection of an intestinal stoma entails inevitable physical changes to the ostomized and can negatively influence the interest and admiration for the intimate partner15.

Despite the constant search for an ideal body, we can’t forget that the changes are inevitable and are part of a progressive and irreversible process regardless of the condition of health of each one. The physiological, biochemical and psychological changes are consequent to the action of time that does not favor the maintenance of an ideal body16.

The changes in body image due to the ostomy are expected as well as the initial social isolation imposed by the ostomized himself. Due to the use of the collector equipment, people with ostomy modify the mode of dressing, and generally use loose clothing with the purpose of hiding these accessories. However, this type of strategy contributes to the damage in corporal aesthetics2. On the other hand, the ostomized can live better with his new body image when there is participation and involvement of his spouse in the daily care of the stoma15.

In this study, the data corresponding to the body image as “more attractive,” the spouses of the ostomized presented lower rates than the spouses of the non ostomized. However, in the analysis of the physical appearance as “less attractive,” the spouses of the ostomized had a positive assessment and presented lower levels in comparison with the non ostomized. From the results found, it can be argued that the intestinal ostomy is considered a physical disability “invisible” to the spouse and interferes fairly or does not interfere in the physical appearance of the person. A previous study shows that some ostomized people, to dribble the stigma, use the strategy of standardization and concealment, which consists the effort to feel normal, so as not to be excluded from social conviviality and possibly to avoid questions of the curious2. This happens when the stigma is related to body parts that should be hidden in public, not to call for attention thus the masking is inevitable whether it’s desired or not17.

In this manner, there is need to reflect on the perception of the spouse regarding the physical appearance of his ostomized partner, when the partner considers that it has not changed. There were respondents who said that their partner was more attractive physically. With this result, it is possible to think that the perception of body image built by the individual over time is not changed immediately by physical damage suffered, requiring a slow perceptual reconstruction because the psychological changes occur more slowly18.

In regard to the perception of the spouse about the stability of marital cohabitation, the interviewees in both groups expressed that there is stability in the marital union of the couple and the majority replied that there is no risk of breakage of the conjugal bond. Faced with this affirmation of the spouses, it seems that the ostomy does not make the union of the couple vulnerable. Thus, the discussion of the variable of the stability of marital cohabitation was limited to the evidence found in this study due to the scarcity in literature.

In the evaluation of the affective relationship of couples, the majority in both groups said that there were no changes, being that the case group presented higher frequency in comparison to the control group. Another fact that draws attention is that the spouses of the ostomized had a lower frequency on the variable of occurrence of changes in affective relationship when compared to the spouses of the non ostomized which demonstrates that the ostomy is not a reason for changes in the affective relationship of the couple.

The continuous coexistence with health disorder raises feeling of accommodation with the undergone situation and ends up developing in these people the tranquility and the confidence necessary to continue fighting and follow up the treatment19. The coexistence of spouses and maintenance of affective bonds, sharing feelings, disappointments, differences and proximity relations can be a factor of conjugal satisfaction20.

This study presents some limitations. The first of them is the scarcity of literature on studies oriented to an understanding of the impact of the stoma on the life of the spouse, which limits the discussion of the results. The second is related to the type of study that deals with intimate issues and which may have influenced the results as regards to the desire to make personal information public. The third and the last, is the lack of information on social habits of spouses before the stoma of the partner.

On the other hand, the method of pairing of participants can remedy doubts as to the results when the two groups were compared, considering that the participants had the same economic and social conditions, i.e the same age, family income and level of education.


The spouses of the ostomized in their majority have the habit of going to restaurants, participating in events and collective leisure activities but when compared to the patients of non ostomized, they participate less in these social activities. However, the results do not make it clear whether the intestinal ostomy of the partner is the reason for the low frequency to social events cited. Nonetheless, it became evident that in the cases studied, despite the perception of a great change in their married life, the spouse showed to be supportive and present in the confrontation of this new situation together with his ostomized partner.

The scarcity of studies directed to an understanding of the impact of intestinal ostomy on the daily life of the couple endangers the assistance to the ostomized and his spouse who do not receive proper attention from the health team. Therefore, the analysis and understanding of the situation can contribute to the improvement of the quality of care of all those involved in the process of marital cohabitation of a spouse and his ostomized partner.


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Received: March 29, 2017; Accepted: June 11, 2017

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