Revista Adolescência e Saúde

Revista Oficial do Núcleo de Estudos da Saúde do Adolescente / UERJ

NESA Publicação oficial
ISSN: 2177-5281 (Online)

Vol. 14 nº 3 - Jul/Sep - 2017

Imprimir 

Páginas 83 a 87


Sexuality of adolescents with down syndrome: a systematized review

Sexualidad de los adolescentes con síndrome de down: una revisión sistemática

Sexualidade dos adolescentes com síndrome de down: uma revisão sistematizada

Autores: Manuelle de Araujo Holanda1; Mayara Francelle Oliveira Barata2; Sandra Conceição Maria Vieira3

1. Master's Degree in Adolescent Medicine, Dental School, Pernambuco University (FOP/UPE). Camaragibe, Pernambuco State, Brazil. Specialization in Hematology/Hemotherapy,  Pernambuco Hematology and Hemotherapy Foundation (HEMOPE). Recife, Pernambuco State, Brazil
2. Master's Degree in Adolescent Medicine, Dental School, Pernambuco University (FOP/UPE). Camaragibe, Pernambuco State, Brazil. Occupational Therapist, Pernambuco University (UPE). Recife, Pernambuco State, Brazil
3. PhD in Pediatric Dentistry. Lecturer, Dental School,  Pernambuco University (FOP/UPE). Camaragibe, Pernambuco State, Brazil

Manuelle de Araújo Holanda
Universidade de Pernambuco
Av. Gal. Newton Cavalcanti, nº 1650
Camaragibe, PE, Brasil. CEP: 54753-020
manuelleholanda@hotmail.com

PDF Portuguese      


Scielo

Medline


How to cite this article

Keywords: Sexuality, Down Syndrome, adolescent.
Palabra Clave: Sexualidad, Síndrome de Down, adolescente.
Descritores: Sexualidade, Síndrome de Down, adolescente.

Abstract:
OBJECTIVE: The aim of this study was to conduct a literature review regarding the sexuality of adolescents with Down syndrome.
DATA SOURCE: Searches were performed in PubMed and Virtual Health Library - VHL using data from literature published since 2007. The descriptors in English were combined using the Boolean operator "AND", using two strategies. Initially, were used the descriptor "sexuality" AND "Down syndrome", and then added "adolescent" as an additional descriptor in both databases.
DATA SYNTHESIS: The search resulted in 57 articles, 04 of which were selected according to the following inclusion criteria: original articles dealing with the sexuality of adolescents with Down syndrome.
CONCLUSION: According to the selected articles, it was possible to observe the need for a more broad information regarding sexuality in adolescents with Down syndrome in order to provide further clarification for these adolescents, and that this theme can be naturally explored, with respect and safety.

Resumen:
OBJETIVO: El objetivo del estudio fue investigar publicaciones sobre la sexualidad de los adolescentes con síndrome de Down.
FUENTE DE DATOS: Una búsqueda de trabajos publicados de 2007 a 2016 fue realizada en las bases de datos PUBMED y Biblioteca Virtual de Salud - BVS. Los descriptivos en inglés fueron combinados usando el operador booleano "AND", a través de dos estrategias de búsqueda. Inicialmente fueron utilizados los descriptivos "sexuality" y "Down syndrome", y enseguida se añadió "adolescent" a los descriptivos anteriores, siendo realizadas en ambas bases de datos. Los artículos fueron seleccionados sin restricción de idioma. Síntesis de datos: El estudio bibliográfico reveló 57 artículos, siendo seleccionados 04 artículos para discusión de temática por atender a los criterios de inclusión: artículos originales y que trataban de sexualidad en el síndrome de Down.
CONCLUSIÓN: De acuerdo con los artículos seleccionados, fue posible observar la necesidad de informaciones más amplias con relación a la sexualidad de adolescentes con síndrome de Down, a fin de tornar las aclaraciones más perceptibles a esos adolescentes, y que tal tema pueda ser naturalmente explorado, con respeto y seguridad.

Resumo:
OBJETIVO: O objetivo do estudo foi investigar publicações sobre a sexualidade dos adolescentes com síndrome de Down.
FONTES DE DADOS: Uma busca dos trabalhos publicados de 2007 a 2016 foi realizada nas bases de dados PUBMED e Biblioteca Virtual de Saúde - BVS. Os descritores em inglês foram combinados usando o operador booleano "AND", através de duas estratégias de busca. Inicialmente foram utilizados os descritores "sexuality" e "Down syndrome", e em seguida acrescentou-se "adolescent" aos descritores anteriores, sendo realizadas em ambas as bases de dados. Os artigos foram selecionados sem restrição do idioma.
SÍNTESE DOS DADOS: O levantamento bibliográfico revelou 57 artigos, sendo selecionados 04 artigos para a discussão da temática por atenderem aos critérios de inclusão: artigos originais e que tratavam da sexualidade na síndrome de Down.
CONCLUSÃO: De acordo com os artigos selecionados foi possível observar a necessidade de informações mais abrangentes a respeito da sexualidade de adolescentes com síndrome de Down a fim de tornar os esclarecimentos mais perceptíveis a esses adolescentes, e que tal tema possa ser naturalmente explorado, com respeito e segurança.

INTRODUCTION

During the past few decades, there has been an upsurge in encouragement for adolescents with Down syndrome (DS) to live within mainstream society, dealing with issues related to school, jobs, recreation and friends. However, there is still one aspect that has not yet been widely explored for this population: sexuality1. A fundamental dimension of adolescents, sexuality is part of their physical and psychological development, in addition to playing a crucial role in the formation of individual identity1.2. DS adolescents feel the need for sexual development, together with sexual desires and impulses, just like their more usually-abled peers1. However, they face barriers such as overprotective parents and the lack of opportunities to interact with their colleagues, where they can express their sexuality.

Although their abilities to learn and be independent are not all the same, together with social stability and perceptions of sexuality, almost all DS adolescents are able to understand some level of sexual knowledge 3.5%. There are still many beliefs and taboos about DS adolescents, ranging from the idea that they are asexual to beliefs that they are extremely over-sexed. They are often treated as eternal children. These beliefs curtail the development of DS adolescents from their adolescence through into adult life, resulting from fear, ignorance, concealment and rejection, always in the name of protection4.

One of the key elements for the sexual development of adolescents is sex education, and this is no different for DS adolescents. This must be considered as a part of the overall education process, with methodology appropriate to their cognitive abilities and ages5, 6. However, society and families do not acknowledge this approach in practice, showing that further in-depth studies are required of this topic4. Like any other youngsters, DS adolescents must develop aspects such as self-esteem, accepting responsibilities and establishing moral values, in order to become sexually healthy individuals2.5%.


METHODS

This review included studies on the sexuality of adolescents with Down syndrome, identifying aspects rated as relevant. This bibliographic review was conducted in November 2016, focusing on papers published between 2007 and 2016, indexed in the PUBMED and Biblioteca Virtual de Saúde - BVS databases. The descriptors in English were combined with the "AND" Boolean operator through two search strategies. Initially, the "sexuality" and "Down syndrome" descriptors were used, followed by adding "adolescent", with searches conducted in both databases. The papers were selected with no constraints on language.

The searches of these two databases produced a total of 57 papers containing the descriptors of interest. In order to pre-select the papers, their titles were read, resulting in twelve publications selected for reading their abstracts, after which four papers were selected for reading their entire contents, as they complied with the inclusion criteria: original papers addressing sexuality with Down syndrome. Studies were excluded that consisted of case reports, review studies and those whose focus was not limited to exploring sexuality with Down syndrome.

The papers were analyzed in two stages. Initially, the paper location data were identified, with year, authorship, country of study, objective sample and journal in which they were published. During the next stage, the papers were analyzed, with the results synthesized and discussed.


RESULTS

The study sample consisted of four papers, of which three were based in Brazil, written in Portuguese, and one based in Australia, written in English (Table 1). When examining the types of methodology used in these studies, it was noted that they opted for ample use of quantitative methods, with qualitative methodology also used in two papers for approaching this topic.




The number of papers found that investigated sexuality in Down syndrome reflects the limited exploration of this topic, in the light of more reflective reflection in greater depth of the behavior and psychological conduct of the analyzed individuals. It is worth stressing that most of the published studies did not focus mainly on sexuality among adolescents with Down syndrome (DS), underscoring to an even greater extent the need for more detailed studies that are also broader-ranging in this field of research.


DISCUSSION

Adolescents with DS present a wide variety of expressions of sexuality and reproductive health, depending on puberal development, family circumstances and social context. When assessing the interest of adolescents with DS in exercising their sexuality, more than half of them demonstrated interest in the opposite sex3.

In the study by Leme et al.2, parents were asked about the sexuality of their adolescent offspring with DS, with 95% replying that it not only exists, but is also inherent to human beings, 5% stated that it did not exist, justifying this by the child-like mentality of their children. For the researcher, such as small percentage indicated that these parents distorted reality by separating sexuality from intellect, feeling that an intellect at the same average level of the other people in the population was necessary in order to be endowed with sexuality.

When comparing the sexuality of adolescents with DS and others more usually-abled, two studies obtained identical replies from parents, saying that the sexuality of DS adolescents is similar to that of other people, but it must be experienced within limits2, 6. Parents are concerned with the reactions of other people to the sexual behavior of their offspring, fearing that they will be poorly understood and misinterpreted1.

With regard to relationships, Leme2 showed that 27% of parents supported dating with freedom, 50% with limits and 18% did not allow it2. Another study investigated the topic of marriage, in which 56% of DS adolescents expressed the wish to get married and 52% wanted to have children, demonstrating life projects3. When asked about marriage, 27.5% of the parents said that marriage was not feasible, while 31.2% felt that DS adolescents could consummate matrimony in some situations. This consequently indicates that parents adopted a less permissive stance towards the feasibility of marriage for their offspring, attributing this to lack of financial independence and emotional maturity7.

The schooling level of parents in the survey conducted by Leme2 proved proportional to their tolerance of the affective life of their offspring. Those with university degrees were more tolerant of dating, marriage and procreation. In comparison, parents with only secondary school educations tended to be more conservative and less permissive towards dating and marriage2.

The parents showed that they were not able to deal with the topic of masturbation, or were embarrassed about addressing this subject7. But this is a fairly frequent practice in the lives of these adolescents because, when asked about this topic in the study by Bononi3, 42% stated that they usually masturbated, with 24% of them doing so daily. Masturbation is viewed as a repercussion of the lack of activities, particularly pleasurable engagement, which does not mean that they have strong sexual needs, but rather that other sources of pleasure and happiness are limited7.

With regard to sexual preferences, DS adolescents receive less information than their peers, as in general health education actions are rare. Only 18% of the adolescents investigated in the study by Bononi et al.3 stated that they had discussed sexual matters with their parents. However, a survey examined this issue, finding that 41.4% of parents felt able to deal with sexual issues. For the others, there was an evident lack of preparation in how to deal with the sexuality of people with DS, as this topic spotlights their own fears, prejudices and forbidden areas in their lives7. Parents must be educated about the current taboos, so that they can address sexuality with their children seamlessly and without contradictions, in ways that are comfortable3.

Adolescents with DS experience different levels of social isolation, curtailing their opportunities for interaction and consequently affective involvement, which are important for sexual discovery. Like other adolescents, they have the right to express their feelings, as sexual repression may alter the inner balance, with adverse effects on psychological well-being. However, when sexuality is properly discussed, psychosexual development improves, with better affective relationships and smoother integration of these adolescents into society3.


CONCLUSION

Despite the importance of this discussion, there is a notable shortage of works on the sexuality of adolescents with Down syndrome, which leads us to wonder whether this is due to the fact that this topic is still viewed with prejudice by society, and is thus consequently rarely addressed.

The researched papers showed that sexuality is constructed by adolescents with Down syndrome in different ways by their families, while some parents also view them as sexually innocent, others believe that they are over-sexed. These differences may be associated with variations in age and gender, as well as their physical or mental health, in addition to the influences of the social and cultural values and representations of each family.

It is necessary to highlight positive, upbeat aspects arising from the sexual practices of these adolescents, in order to offset prejudices related to the exercise of their sexuality, helping enrich the existence of these practices. Heightening awareness among these adolescents and empowering them for their sexuality paves the way for building up a good personal image and individual knowledge, while also extending beliefs about their potential and difficulties in this field.


REFERENCES

1. Ginevra MC, Nota L, Stokes MA. The Differential Effects of Autism and Down's Syndrome on Sexual behavior. Autism Research. 2016; 9: 131-140.

2. Leme CVD, Cruz EMTN. Sexualidade e síndrome de Down: uma visão dos pais. Arq Ciênc Saúde 2008, 15(1):29-37.

3. Bononi BM, Sant'Anna MJC, Oliveira ACV, Renattini TS, Pinto CF, Passarelli ML et al. Sexuality and persons with Down syndrome. A study from Brazil. Int J Adolesc Med Health 2009;21 (3):319-326.

4. Pérez EP, Baró EG. Estrategia de intervención educativa sobre la sexualidad en niños con el síndrome de Down. Rev Cubana Med Gen Integ 2009; 25(3):95-104.

5. Moreira LMA, Gusmão FAF. Aspectos genéticos e sociais da sexualidade em pessoas com síndrome de Down. Rev Bras Psiquiatr 2002; 24(2):94-9.

6. Bononi BM, Oliveira ACV, Renattini TSM, Sant'Anna MJC, Coates V. Síndrome de Down na adolescência: Limites e Possibilidades. Adolescência & Saúde. 2009; 6(2).

7. Castelão TB, Schiavo MR, Jurberg P. Sexualidade da pessoa com síndrome de Down. Rev Saúde Pública 2003; 37(1):32-9.
adolescencia adolescencia adolescencia
GN1 © 2004-2017 Revista Adolescência e Saúde. Fone: (21) 2868-8456 / 2868-8457
Núcleo de Estudos da Saúde do Adolescente - NESA - UERJ
E-mail: secretaria@adolescenciaesaude.com