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 studies11-14 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 studies20,21 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 studies25,26 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