Aspectos da vida sexual de doentes com espinha bífida em Portugal
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Data
2006
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Edições Universitárias Lusófonas
Resumo
O tratamento multidisciplinar da espinha bífida resultou num considerável aumento do número de doentes a atingirem a
idade adulta. A vida sexual de um doente com espinha bífida está afectada não só pelas limitações físicas inerentes à
doença, mas também pelos impactos psicológico e social desta doença. Trata-se de um tema de proporções pouco
conhecidas, particularmente na população portuguesa de doentes com espinha bífida, na qual julgamos nunca ter sido
feito um estudo do género. Dos 497 doentes sócios da ASBIHP, 219 têm idades superiores a 15 anos. Destes, um total de
27 doentes disponibilizaram-se a participar neste estudo tendo para tal respondido a um questionário por eles distribuído.
Resultados: Apesar de ter sido fornecido algum tipo de educação sexual a quase todos os doentes, a maioria gostaria de
receber informação específica sobre espinha bífida. De todos os doentes que participaram neste estudo, apenas 33,3 %
viviam um relacionamento íntimo actual, apenas 22,2 % tiveram actividade sexual no último ano e apenas 25,9 %
estavam satisfeitos com a sua actividade sexual actual. Incontinência e falta de auto-confiança foram considerados
obstáculos importantes. Quando relacionados os vários factores conclui-se que os doentes jovens, de sexo masculino,
com deambulação limitada a cadeira de rodas, mau controlo da incontinência urinária e fecal e com necessidade de
utilização de fraldas ou pensos tiveram maiores dificuldades em estabelecer relacionamentos íntimos e em ter uma vida
sexual activa e satisfatória.
Conclusões: A sexualidade é importante para os doentes com espinha bífida. A educação sexual e a vigilância das
dificuldades que estes doentes têm em atingir uma vida sexual activa e satisfatória, devem fazer parte dos objectivos dos
profissionais de saúde que assistem estes doentes.
The multidisciplinary treatment of spina bifida resulted in a considerable increase of the number of patients reaching adulthood. The sexual life of a patient with spina bifida is affected, not only by the physical limitations inherent to the disease, but also by its psychological and social impacts. We are dealing with a fairly unknown theme, particularly for the patients with spina bifida in the Portuguese population, where we believe a study of this type has never been carried out. Of the 497 member patients of the ASBIHP, 219 are over the age of 15. Of these, a total of 27 patients offered to participate in this study by responding to a questionnaire. Results: Even though some type of sexual education was given to almost all of the patients, the majority would like to receive specific information about spina bifida. Of all the patients who participated in this study, only 33.3% were in a current intimate relationship, only 22.2% had sexual activity in the past year and only 25.9% were satisfied with their current sexual activity. Incontinence and a lack of self-confidence were considered to be important obstacles. When the various factors were compared, the conclusion was that the young male patients in wheelchairs with limited deambulation and bad urinary and faecal incontinence control, and who needed to use diapers or pads, had bigger difficulties in establishing intimate relationships and achieving an active and satisfactory sexual life. Conclusions: Sexuality is important for patients with spina bifida. Sexual education and the vigilance of the difficulties these patients have in reaching an active and satisfactory sexual life should be part of the objectives of the health professionals that accompany these patients.
The multidisciplinary treatment of spina bifida resulted in a considerable increase of the number of patients reaching adulthood. The sexual life of a patient with spina bifida is affected, not only by the physical limitations inherent to the disease, but also by its psychological and social impacts. We are dealing with a fairly unknown theme, particularly for the patients with spina bifida in the Portuguese population, where we believe a study of this type has never been carried out. Of the 497 member patients of the ASBIHP, 219 are over the age of 15. Of these, a total of 27 patients offered to participate in this study by responding to a questionnaire. Results: Even though some type of sexual education was given to almost all of the patients, the majority would like to receive specific information about spina bifida. Of all the patients who participated in this study, only 33.3% were in a current intimate relationship, only 22.2% had sexual activity in the past year and only 25.9% were satisfied with their current sexual activity. Incontinence and a lack of self-confidence were considered to be important obstacles. When the various factors were compared, the conclusion was that the young male patients in wheelchairs with limited deambulation and bad urinary and faecal incontinence control, and who needed to use diapers or pads, had bigger difficulties in establishing intimate relationships and achieving an active and satisfactory sexual life. Conclusions: Sexuality is important for patients with spina bifida. Sexual education and the vigilance of the difficulties these patients have in reaching an active and satisfactory sexual life should be part of the objectives of the health professionals that accompany these patients.
Descrição
Revista Lusófona de Ciências e Tecnologias da Saúde
Palavras-chave
MEDICINA, SEXUALIDADE, MALFORMAÇÕES CONGÉNITAS, ESTUDOS DE CASO, ESPINHA BÍFIDA, PORTUGAL, MEDICINE, SEXUALITY, CONGENITAL MALFORMATIONS, CASE STUDIES, SPINAL DYSRAPHISM, PORTUGAL