Disability Among Adults in Brazil With a Colostomy: A Cross-sectional, Descriptive Study

People with an ostomy need care appropriate to their needs and should be encouraged to adapt to their situation. In Brazil, persons with a stoma meet the legal definition of being disabled, enabling them to access comprehensive health care services. PURPOSE: The objective of this study was to evaluate the degree of disability experienced by persons with a colostomy. METHODS: A cross-sectional study was conducted among people with a colostomy in one Brazilian public health service. Between May 2017 and January 2018, persons at least 18 years of age who had a colostomy for at least 3 months were eligible to participate. Sociodemographic and stoma characteristic variables were collected, and the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 was used to assesses perceived levels of disability. Higher scores indicated greater degree of difficulty. All persons with a WHODAS score >0 were classified as disabled. Descriptive statistics, chi-squared, and Fisher’s exact tests were used for data analysis, with a significance level of 5%. RESULTS: Among the 58 predominantly elderly participants (29 women, 29 men; mean age 64 ± 12 years), the overall mean WHODAS score suggested a small degree of impairment (3.1 ± 7.1). The highest scores were observed in the domains participation (6.3 ± 16.1), mobility (5.6 ± 17.3), and life activities (5.3 ± 15.6). The majority of participants (41, 70.7%) had a disability score of 0 (no disability). The proportion of persons who did or did not perceive any level of disability did not differ significantly by the stoma variables assessed. CONCLUSION: Based on the WHODAS scores, the majority of study participants did not perceive themselves as being physically disabled. Other clinical studies should advance this discussion in order to better understand the perception and reality of disability among ostomates. 

It is well known¹ that people undergoing the creation of an ostomy must be attuned to their individual psychobiological, psychosocial, and psychospiritual needs, because having an ostomy generates changes that can result in possible limitations in activities of daily living. Support from the family is meaningful for these people, and health services are essential for the reintegration of patients with an ostomy back into their lives before this surgery. According to qualitative study,² rehabilitation (ie, adjustment) is fundamental to achieving well-being and autonomy aimed at quality of life and consequent (re)insertion into society.

In Brazil, people with ostomies are considered physically disabled by law. The Ordinance of the Ministry of Health³ number 400 of November 19, 2009, regulates the clinical assistance provided to persons with ostomies and defines as part of the process of rehabilitation the set of actions that can promote independence, help the ostomate achieve self-care, prevent stomal complications, and facilitate adaptation and attention to psychosocial needs. Deprivation of fecal control and elimination of gases, among others, are major factors that cause major disturbances among affected persons with an ostomy and contribute to changes in daily activities imposed by this new reality, often resulting in their social isolation.⁴

However, although national and international cross-sectional studies^5,6 have evaluated the quality of life of people with an ostomy and are necessary to guide services covered by this ordinance to effectively and qualitatively meet the needs of individual patients, research in this regard is limited. 

In addition to the clinical perspective, persons in Brazil with a stoma legally are considered physically disabled; knowing the degree and type of limitations and directing them to appropriate assistance is important to better understand what is required for rehabilitation (adjustment) and allows health professionals to propose improvements to promote adaptation before the disabilities thwart activities of daily living and negatively affect quality of life.

The objective of this study was to evaluate the degree of and factors that may affect disability among people with an ostomy using an internationally validated instrument translated into Portuguese.

Setting. A cross-sectional, descriptive, analytical study was conducted in a public health care service that assists people with ostomies and that serves as a reference health institution for 13 municipalities in the west center region of Brazil, serving a population of 415 040.

The implementation of the ostomy services in Brazil complies with the Ordinance of the Ministry of Health number 1060 of June 5, 2002, which established the National Policy on the Health of People with Disabilities; and Administrative Rule number 400 of November 16, 2009, that established National Guidelines³ for the care of persons with an ostomy within the Unified Health System. The service has a multiprofessional team consisting of a physician, a nurse, a social worker, a psychologist, and a nutritionist whose purpose is to promote rehabilitation, self-care, and prevention and treatment of complications; to provide protective and collection devices; and to train professionals.⁷

Population. At the time of data collection, the service had a population of 171 people, of which 70% on average had colostomies. Patients at least 18 years of age who had a colostomy for a minimum of 3 months were considered eligible for the current survey. Those receiving chemotherapy treatment or radiotherapy and persons in a weakened condition were excluded (see Figure 1).

Procedure. The research was conducted from May 2017 to January 2018. Patients were contacted and invited to participate by the researchers, who held interviews at the public health service or at the patient’s home. 

Data were collected using 2 questionnaires, completed individually between the participants and the researcher. One form, developed by the researchers, consisted of clinical and sociodemographic  identification information regarding independent variables of age, occupation, income, education (defined in years of schooling), marital status, diagnosis, favorite leisure activity, sexual activity, employment (bond reported), comorbidities (described in open-ended questions), type of ostomy (permanent or temporary), and time since surgery (described in full years).

The second tool was the World Health Organization Disability Assessment Schedule⁸ (WHODAS) 2.0, a scale that assesses health and disability in the population or clinical setting of each person. Validated by the World Health Organization, WHODAS 2.0 is divided into 6 domains: cognition — understanding and communication; mobility — movement and locomotion; self-care — ability to perform one’s hygiene, dress, eat, and stay alone; interpersonal relationships — interactions with other people; activities of daily life — domestic responsibilities, leisure, work, and school; and participation — participation in community activities and in society.

The 12 + 24-item version of the WHODAS 2.0 was used; this version is a combination of the 12- and 36-item versions. The 12 initial items track problematic domains of functionality; based on the positive responses of the 12 initial items, 24 additional questions can be included. This version can be administered only by an interviewer or through computerized adaptive assessment. The interviews were conducted by the researchers themselves to eliminate bias and standardize the collection process. 

Data collection and analysis. The interview data were coded and transferred to a database for further analysis. Initially, a descriptive statistical analysis was performed for the demographic and historical data of the patients. WHODAS 2.0 uses a syntax that is a scoring algorithm of its own. Afterwards, a comparative analysis was performed.

Each of the items was assigned one the following scores: none = 1, mild = 2, moderate = 3, severe = 4, extreme = 5 (ie, where 1 represents no difficulty and 5 extreme difficulty or failure to do the task). Higher scores indicate greater degree of perceived disability. The total score ranges from 0 to 100, where 0 = no disability and 100 = complete disability.⁹

SPSS for Windows, version 22.0, Student Version, (IBM Corp, Armonk, NY) were used for statistical analysis. Analysis strategies involved prevalence, mean, and standard deviation as well as use of chi-squared and Fischer’s exact tests to compare proportions, with a significance level of 5%. The analysis was performed dichotomously, with or without disability. The variable disability was understood as any score >0 for WHODAS 2.0.

Ethical consideration. The research followed international ethical parameters for studies with human beings according to the Declaration of Helsinki and was approved by a Research Ethics Committee regulated by the National Council of Ethics in Research in Brazil under Opinion of approval number 2.074.565. All participants signed the Informed Consent Form and were guaranteed privacy regarding their identity and data.

Sociodemographic findings. All eligible patients participated. The study sample consisted of 58 persons (29 women and 29 men) and included predominantly elderly participants (mean age 64 ± 12 years). Most participants were married (36, 62.1%), retired (36, 62.1%), completed a mean of 6 ± 3 years of school (32, 55.2%), and received up to 2 minimum wages (44, 75.9%) (see Table 1).

Participants had their ostomy for an mean of 61 ± 60 months; the majority had a permanent ostomy (31, 53.4%), and cancer was the most common reason for ostomy creation (47, 81.0%). With regard to comorbidities, the majority of participants reported having hypertension (31, 53.4%) and diabetes mellitus (18, 31.0%); 5 (8.6%) had another type of cancer that was not related to the ostomy surgery and for which they were not undergoing treatment with chemotherapy and/or radiotherapy at the time of this research. Eighteen (18, 31%) reported no comorbidity (see Table 2).

Among the participants, 35 (60.3%) reported they were not sexually active. The most frequently mentioned leisure activities (each 39, 67.3%) were religious activities and meeting friends (see Table 2).

WHODAS results. The overall mean disability assessed by the domains was for a score of 3.1. The self-care domain had the lowest mean score (1.5); the highest mean score was for participation (6.3) (Table 3). The instrument also found that 91% ± 0.28% of the study participants lived independently in the community and 9% of them needed some kind of daily assistance.

The majority of participants (41, 70.7%) had a disability score of 0 (no disability), and 17 (29.3%) had some degree of disability. In this latter group, the elderly were found to have less disability (41, 70.7%) in relation to the adult population. With regard to gender, 31 (53%) of the population with some kind of disability were male. 

Persons who received 1 or less minimum wage (31, 53.4%) were analyzed against the presence of disability. More than half (31, 53.4%) of the persons with a disability score >0 had a permanent ostomy. Of the participants with another type of cancer (different from the one that necessitated the ostomy),  35 (60.3%) had a disability score >0. It should be noted that some participants had more than one comorbidity/disease (see Table 4).

When analyzing the relationship correlation between time with an ostomy and the degree of disability, no degree of disability was observed within a median of 48 months. 

No statistically significant differences were observed between degree of disability and the variables age, gender, income, permanent or temporary ostomy, education level, and time since ostomy surgery.

The majority of participants in this study were older adults and, based on WHODAS score, did not have a disability even though they met the legal definition of disability in Brazil. 

The study participants were predominantly elderly, and age can interfere with the self-care process. In Brazil, an aging population is notoriously challenging for contemporary public health.¹⁰ Cross-sectional studies^11-14 have shown that the changes that occur with aging are associated with psychological issues that may affect self-care, especially elderly persons with ostomies; thus, it is important to improve quality of life and reduce physical, social, and psychological effects of aging in this population, which can be exacerbated by having an ostomy. 

The level of education can be important for the individual’s ability to self-care and is a factor that can interfere with rehabilitation.¹³ However, although study participants had a low level of education, they had dealt with their ostomies for 60 months on average and their knowledge of rehabilitation was independent of schooling. Their hands-on, lengthy experience supports that teaching-learning strategies should be established based on the link between the health team and the individual and respect the knowledge and life experiences of the patient. This approach can empower and ensure patients that they will have autonomy to be involved in their own health care.¹³ 

Participant income in this study was 2 minimum wages or less. Study data reflect that 1) the study was conducted in a public health care service that assists people with an ostomy and 2) they have low levels of education, because income has been found to be directly proportional to the schooling time.¹ It is of fundamental importance to consider the financial situation of persons with an ostomy, because although they receive ostomy equipment and some supplies for care from the public service, in some cases, other products are necessary for health maintenance. Patients may have to weigh medical expenses against other demands (eg, food and housing) that generate financial burdens on the family income.¹⁵

Another factor contributing to self-care and rehabilitation was related to marital status. Most participants were married. Successful rehabilitation is a result of family support coupled with therapeutic care, support from society, targeted interventions, and material resources. According to a qualitative study,¹⁶ a person with a partner is provided substantial emotional support and encouragement to adapt to changes in their lifestyle. However, this study also found being married does not always imply an active sex life. The creation of the ostomy changes ostomates’ perspective about self-image, making them feel different from other people and possibly affecting sexuality. According to a cross-sectional study,¹⁷ it is the responsibility of professionals to demystify negative views that patients and partners may have about sex after surgery and provide the encouragement necessary for ostomates and their partners to (re)discover forms of sexual pleasure and satisfaction.

Considering these factors, self-esteem may be greatly affected in patients with ostomy and may be directly related to self-perception. This behavior is subjective and can positively or negatively affect each person.¹⁸

Research¹ showed that persons with temporary ostomies demonstrate more difficulty with self-care than those with a permanent ostomy. The current study found the longer a person lives with an ostomy, the greater the adaptation and the lower the degree of incapacity.

The disease that necessitated the creation of the ostomy in this study primarily was cancer, data that may be justified by the prevalence of elderly participants. The high number of elderly with ostomies may be explained by prolonged exposure to risk factors that favor the process of oncogenesis.²

In addition to the underlying disease, health status depends on the way patients face the aging process. The World Health Organization has argued that although people are living longer, they are not necessarily healthier. With the change in the population profile, there has been a predominance of chronic, degenerative diseases that have low mortality rates but high disability rates. In this study, in addition to the ostomy, disabilities were present due to other comorbidities.^10,19

Another significant variable concerns participation in social and leisure activities. Qualitative studies^20,21 note that having an ostomy can affect these activities, because the need to wear an ostomy device may cause people to isolate themselves from society, fearing the opinions of others. However, despite changes in lifestyle, most study participants maintained interpersonal relationships. Thus, it is important to encourage leisure and social activities to expedite adaptation and consequently minimize the degree of disability.¹³

Brazilian legislation recognized persons with an ostomy as disabled in the Presidential Decree²² number 5,296 of December 2, 2004, in which a person with a physical disability is described as having a complete or partial alteration of one or more segments of the human body, impairment of physical function, manifested in various forms, among them, the ostomy. The ostomy, unlike other physical deficiencies, is a hidden disability because it is not clearly noticeable. Many people with an ostomy, in order to be socially accepted, cover the ostomy, adapt their clothes, or restricting social contact. When the ostomy is not visible, it may improve self-image and how society perceives the stoma.^12-18

However, results of the WHODAS 2.0 did not represent the studied group as presenting physical disability among the evaluated domains. Therefore, their health condition did not prevent them from performing daily activities. However, some complications can negatively interfere with activity, because ostomy devices can cause discomfort and peristomal issues such as edema, skin lesions around the ostomy, dermatitis, and infections.²³ The domain participation was one of the areas found more deficient in this study in terms of disability. The use of ostomy devices is related to negative feelings that can impact the patient’s social interactions. The changes in daily activities experienced by people with ostomies can damage social participation, increasing their fear of social rejection.²⁴

Scores on the self-care domain indicated study participants had sufficient aptitude for self-care and that they did not feel disabled in this regard. Qualitative studies^25,26 showed self-care/autonomy favors the process of rehabilitation, allowing the reintegration of ostomy patients into the community while respecting the limitations of their condition. 

Influences that were nonassessed in this study that could relate to the degree of disability include the quality of health care provided and the family and social support network, among other factors.²⁷ A multiprofessional team needs to be involved in the patient’s rehabilitation and ability to cope with his/her current health condition. A qualitative study²⁸  showed that in addition to assistance from qualified professionals, family support and patient empowerment are important points to be considered for successful rehabilitation. In this scenario, ostomy therapist nurses are vital to the rehabilitation process. Furthermore, teamwork among physicians, nurses, social workers, nutritionists, and psychologists, among others, is necessary in order to provide quality assistance and to address the complexity of the rehabilitation process in order to build a care plan that reflects the input of all relevant areas of expertise.²⁹ 

The instrument used is generic and may not have been the most adequate tool for assessing physical disability in this population. The WHODAS 2.0 is based on the concept that the person has perceptions of himself; answers are subjective. Another limitation was the diversity of the participants. Although they are linked to a single health service, they reside in different municipalities. As such, the study evaluated only part of a population. Other cross-sectional studies need to be conducted on this topic, perhaps without the characterization of ostomates in Brazil as deficient. Another important limitation is the authors’ inability to determine whether these results can be extrapolated or if they are affected by the currently available health services for persons with a stoma. 

In a study that assessed perceptions of disability among Brazilian persons with an ostomy who were mostly elderly, married, retired, and with low levels of education, the results show this population does not present as significantly disabled by their situation. The highest mean disability scores, representing limitations, were in the participation in life activities domain of the assessment instrument. The analysis of the degree of disability of this population provides insights regarding the knowledge of factors that may interfere with quality of life and rehabilitation of this group and can contribute to the creation of strategies for the care for patients with colostomy.

Please address correspondence to: Juliano Teixeira Moraes, RN, CETN, MS, PhD, Federal University of São João del-Rei, Campus Central West, Sebastião Gonçalves Coelho Street, 400 - Chanadour, Divinópolis, MG, Brazil 35.501-296; email: julianotmoraes@ufsj.edu.br.