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Introduction
Sexuality and intellectual disability (ID) are rather complex topics to address, especially when combined. According to some authors, the majority of individuals with ID have precarious knowledge about sexuality, due to the fact that sex education is insufficient or does not fit the features and needs of these individuals (Kammes, Douglas, Maas & Black, 2020; Kürtüncü & Kurt, 2020; Schmidt et al., 2021; Yıldız & Cavkaytar, 2017). The possible inappropriate behaviours of these people towards sexuality are mainly due to poor sex education (Wilson & Frawley, 2016). Besides the family and the educators, the intervention of health professionals in terms of sex education with the individual with ID is pivotal (Saxe & Flanagan, 2016).
It is important to stress that individuals with ID are a vulnerable group, and, thus, it is critical that health professionals adopt effective strategies to address this topic, using properly planned and systematised sex education programmes, oriented and adjusted to this population and their features, based on protocols grounded on theory-based evidence (Löfgren-Mårtenson & Ouis, 2019; Schaafsma, Kok, Stoffelen & Curfs, 2017; Schmidt, Brown & Darragh, 2020; Wilson & Frawley, 2016). According to these authors, sex education, when carried out, is not always well-articulated or meets the specific needs of the individual with intellectual disability.
There is a lack of studies, discussions and reflections at the academic level and in professional practice in this area, and when these themes are addressed, they are limited to sexual intercourse as a risk and not as a healthy relationship or as an evaluation of the effectiveness of interventions in this area (Kürtüncü & Kurt, 2020; Schmidt, Brown, et al., 2020).
Sex education is not always well-articulated nor meets the specific needs of individuals with ID. There is evidence that when sex education programmes are applied, they show positive results and gains in the behaviour of individuals with ID. The development of a sex education programme has an impact on the attitudes and knowledge of both people with ID, their parents and professionals who accompany them, verifying positive changes of acting in the different contexts of their lives (Frank & Sandman, 2019; Grove, Morrison-Beedy, Kirby & Hess, 2018; Sala, Hooley, Attwood, Mesibov & Stokes, 2019; Schmidt, Robek, Dougherty, Horstman & Darragh, 2020). Bearing in mind that health education is one of the nurses’ responsibilities in this context, their intervention should aim at training individuals with ID to experience sexuality in a healthy way.
The main objective of this study was to assess the impact of a sex education programme on a sample of people with intellectual disability.
1. Theoretical framework
It is estimated that more than one billion people live with some type of disability, which corresponds to approximately 15% of the world population. About 110 million (2.2%) and 190 million (3.8%) aged 15 or more have significant functioning difficulties (World Health Organization, 2018). The Associação Portuguesa de Deficientes [Portuguese Association of Disabled People] (2011) warns that, in Portugal, there are about one million people with disabilities, after the last censuses.
According to the American Association on Intellectual and Developmental Disabilities [AAIDD] (2010, p. 5) “Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18”.
The World Health Organization (2018) alerts that there is evidence that people with disabilities seek more health care than people without disabilities and have greater unmet needs, and also that health promotion and prevention activities rarely target people with disabilities. The responsibility of professionals, of the entities involved with this topic and of society itself should be to safeguard the right of people with disabilities to reach the highest standard of health care, without discrimination, as stated in article 25 of the Convention on “the Rights of People with Disabilities”.
Sexuality is one of the main areas in which health promotion in these individuals is paramount. Most individuals with ID have sexual development of the individual physical and psychological features, although it may take place later than in other persons (Gil-Llario, Morell-Mengual, Ballester-Arnal & Díaz-Rodríguez, 2018; Schmidt et al., 2021). Individuals with disabilities manifest their sexuality in different ways, namely through dialogue; behaviours that express affection; the desire to date; masturbation and sexual games (Schaafsma et al., 2017). Currently, there is still a stance of denial regarding the sexuality of the individual with an intellectual disability, both by the general population and by some parents and professionals. It is often perceived as an abnormal or pathological phenomenon (Kammes et al., 2020; Saxe & Flanagan, 2016).
In this context, these individuals generally receive little information on the functioning of their bodies; sex education, when carried out, is neither adjusted to their characteristics nor meets the specific needs of individuals with ID (Kürtüncü & Kurt, 2020; Oakes & Thorpe, 2019; Stoffelen et al., 2017). The society that the individual with disabilities is part of contributes to the existence of stigma and limitation of values, beliefs and social expectations that foster the idea that this individual is incapable, fragile and vulnerable (Gil-Llario et al., 2018; Kammes et al., 2020; Kürtüncü & Kurt, 2020; Saxe & Flanagan, 2016).
The literature review carried out on the topic confirmed the need to increase research, publications and information on the knowledge that individuals with ID have about their sexuality, seeing the individual holistically and highlighting the role that the Nurse should play in terms of sex education of these individuals.
2. Methods
The action-research (AR) methodology was used, and the project seeks to meet the daily needs of the population under study, and which are directly linked to difficulties experienced by health professionals. The study followed the guidelines of the model proposed by Susman and Evered (1978), developing a cyclical process with five phases: diagnosis, action plan, action implementation, evaluation, and identification of the information acquired. The idea of the spiral cycle was present throughout the study. The AR lasted four cycles, corresponding to the academic years 2011/2012, 2012/2013, 2013/2014 and 2014/2015. The 1st Cycle focused on carrying out the diagnosis of needs in the context of sexual education, with the development of awareness sessions on the subject; in the 2nd Cycle, sexual education sessions were developed aimed at specific themes identified as priorities; the 3rd and 4th Cycles were based on adequacy, planning and implementation of the “Me and others” programme (SICAD, 2016).
2.1 Sample
Bearing in mind the objectives of the study, the target population and accessibility, we chose to develop it in an institution that supports individuals with ID, with around 109 registered clients, in the Centre region of Portugal. The population of the study corresponds to customers registered in the institution in the academic years from 2011/2012 to 2014/2015. A probabilistic convenience sample was used in the study, defined according to the intervention developed, corresponding in the 1st cycle to 58 participants, in the 2nd cycle to 62 participants, in the 3rd and 4th cycle to 16 participants.
2.2 Data collection instruments and procedures
Given the longitudinal nature and specific features of the population, several data collection techniques were used, namely: employee questionnaires, direct observation, field notes, and the Sexuality Knowledge, Experience and Needs Scale for People with Intellectual Disability (Sex-Ken ID).
McCabe’s (1994) SexKen-ID is a scale validated and translated into Portuguese by Pinto and Nobre (2011) that assesses the sexuality of individuals with ID, through 13 subscales for assessing the dimensions of knowledge, experience, feelings and needs in a wide range of areas. This instrument is divided into three parts. The first part focuses on the less invasive areas of sexuality (friendship, dating and intimacy, marriage and identification of body parts); the second part addresses more particular aspects of sexuality (sexuality and sex education, menstruation, sexual interaction and contraceptive methods); the third part explores the most personal areas (pregnancy, abortion and childbirth, sexually transmitted infections (STIs), masturbation and homosexuality). Each part includes questions of knowledge that are relevant to the subsequent ones. For the purposes of this article, only the Knowledge dimension of SexKen-ID was used.
For the selection of participants, the following inclusion criteria were defined: young individuals with ID with a mild or moderate level of severity, and voluntary acceptance to join the programme. The following exclusion criteria were defined: individuals with ID with a severe or profound level of severity.
In the first two Cycles, interventions were carried out in each activities room, from the 3rd Cycle onwards the participants were divided into groups, according to their abilities.
During the completion of the study, ethical principles were respected, with the opinion of the institution’s ethics committee and the various consents: from the institution’s management bodies; the authors of the SexKenID Portuguese version for its use; the authors of the programme “Me and the Others” for its adaptation and implementation; the participants; and legal guardians. The study also took into account the respect for the freedom of each participant, at every moment, and the commitment for their protection and defence during all phases of the research was an ethical imperative, which in these individuals, with all their vulnerabilities, becomes more significant.
2.3 Data analysis
The analysis of qualitative data was carried out using the content analysis technique, according to Bardin (2013). This analysis focused on the responses of people with ID to open-ended questions related to the knowledge dimension of SexKen-ID. At a methodological level, all the questionnaires were coded and the data were entered into the computer without any identification element, in order to allow data analysis without compromising confidentiality. For the content analysis of the information, the data of interest for the investigation were identified and categorized according to the concepts emerging from the participants' discourse. To ensure the reliability of the procedure, with a view to understanding the results, a work was carried out to reinterpret the information with other people who collaborated in this process. For the analysis of quantitative data, descriptive statistics techniques were mainly used.
3. Results
The 1st AR cycle took place during the academic year 2011/2012 and focused on the interaction with the context and the identification of intervention needs in the area of the promotion of health of individuals with ID. Several deficiencies in self-care, development and health deviation were identified, as well as a lack of knowledge, skills and motivation of clients to maintain life, health and well-being. Within the whole array of needs, sexuality was identified as one of the major priorities for intervention.
The analysis of 58 individual processes allowed to identify that the majority of clients of the center of occupational activities (COA) were men (70%), with the average age of 31 years old, the age group with the highest percentage being between 25 and 29 years old (24.1%). The majority had a severe disability (77%), followed by a profound disability (18%). In most cases, the etiology of the intellectual disability was unknown (40.4%), followed by genetic factors - trisomy (15.8%) and prenatal factors (14%). In general, the individuals had one or more associated disorders or disabilities. Most users had motor disabilities (31.6%), controlled epilepsy and visual impairment (15.8% each).
Through the data collected by the questionnaires applied to the employees (n = 11), the themes identified as priorities to be addressed with customers were "Promotion of Hygiene Care" (100% of responses), "Physical and Verbal Violence" (90.9% of responses), and "Sexuality of Persons with Disabilities" (81.8% of responses).
To respond to this diagnosis, the first edition of health education sessions on “sexuality” took place in all COA activities rooms, namely with those participants who met the inclusion criteria (n=36). These sessions sought to alert individuals with ID to appropriate and inappropriate sexuality-related behaviors. The second edition aimed to reinforce some knowledge on the subject, namely teaching about the use of the condom, to a more restricted group of clients (n=5).
Gamification was used as an intervention strategy. This is the process of integrating game components and game development methods into solutions that aim to address serious issues, including health challenges (Novak et al., 2015). This process motivates people's participation and involvement, while making tasks more fun and interactive. The use of gamification associated with therapeutic objectives, proved to be appropriate for the target population.
The assessment of this RA cycle, through both the analysis of the evaluation data of the sessions and meetings with the technical team, allowed identifying the need to continue the intervention indicated in the scope of “sex education of the individual with ID”.
The objective defined for the 2nd RA cycle (academic year 2012/2013) was “to promote a safe sex education of the individual with ID”. For its implementation, a health education session on the topic “Sexuality and Hygiene” was carried out. The specific objectives were: to promote safe sex education; to clarify doubts or myths about sexual intercourse; to promote hygiene habits associated with sexuality; to inform about acceptable social behaviors; to inform about healthy sexuality; and to promote respect in peers. This session was replicated in all COA activities rooms, with those who met the inclusion criteria. The strategies used met the characteristics of the target population, using PowerPoint presentations based on illustrative images of the topic and high interaction with the groups. In the total sessions, 62 clients participated, most of whom showed interest in the topic.
The experience resulting from the previous cycle proved the low level of information that individuals with ID have about their sexuality. This makes them even more vulnerable, especially with regard to sexual violence, STIs and unplanned pregnancies. Following the assessment of this RA cycle, once more, through both the analysis of the evaluation data of the sessions and meetings with the technical team, the need to design an intervention project aimed at “sex education of individuals with ID” was identified.
In this sense, objectives defined for the 3rd RA cycle (academic year 2013/2014) were “to design and develop a programme of education for the affections and sexuality of the individual with intellectual disability”. The following specific objectives were defined for the “programme of education for the affections and sexuality of the individual with ID”: to identify the knowledge of the individual with ID on sexuality; to implement the programme of education for affections and sexuality with strategies that are appropriate to the specificities of the individual with ID; to assess the impact of the programme of education for affections and sexuality on the knowledge of individuals with ID.
To attain those objectives, and after been in contact with the programme “Me and the Others” of Serviço de Intervenção nos Comportamentos Aditivos e nas Dependências [Service of Intervention in Additive Behaviors and Dependencies] (SICAD, 2016), given its purpose and methodology, it was deemed that it could fulfil the aims of the “education program for affections and sexuality for individuals with ID”.
education program for affection and sexuality for people with ID”
SexKen-ID implemented before and after the intervention was used to assess the impact of this programme; the assessment of the process was carried out based on the instruments recommended by the programme “Me and the Others”, such as characterization sheets, session planning and assessment sheets, and satisfaction assessment. Observation and field notes collected during the implementation of the sessions were also used. This programme was developed as a preventive intervention instrument, based on six theoretical models: the social influence model, the comprehensive/social model, the cognitive/informative current, the health promotion model, the constructivist model, and the game theory (SICAD, 2016). It may be implemented in the school context, free time activities, and youth associations as long as the conditions of loyalty with the programme are guaranteed, that is, at least seven sessions of one hour each (SICAD, 2016). This programme is based on nine stories in electronic format, each of which addresses topics related to personal and social development. The main challenge is to discover the story of each of the characters and help the participants to make decisions in a certain context, to promote an environment of reflection and personal growth. This programme seeks to explore interactive narratives, in relation to which the participants decide the development of the plot of the story used (SICAD, 2016).
With the end of the RA 3rd cycle, the implementation of the “programme of education for the affections and sexuality of the individual with ID” was scheduled to be implemented in the next cycle. Thus, the 4th RA cycle (academic year 2014/2015) aimed to implement and assess the impact of this programme.
Initial training for the applicators (Game Masters) of the programme “Me and the Others” was carried out by the SICAD team, and authorisation was requested from the people in charge of the programme for adapting and integrating it as an intervention strategy for the “programme of education for the affections and sexuality of the individual with intellectual disability”. “Story 5 - Loves and non-loves” was selected (SICAD, 2016).
With the adaptation of the selected story, the original topics were maintained and topics related to marriage, identification of body parts, pregnancy, abortion and childbirth, menstruation, sexuality and sex education, masturbation and homosexuality were integrated. These topics were addressed over eight sessions, being presented in the form of life situations similar to reality, seeking to foster a reflective and critical group dynamic that promotes knowledge attainment. A gradual and more specific approach to information using active, participatory and interactive methodologies, using mainly gamification, was chosen.
To maintain the reliability of the programme and its correct applicability, meetings also took place with one of the heads of the technical support team of SICAD, to obtain clarifications and guidelines of the programme.
Participants were divided into two groups. Group A was composed of nine individuals aged between 21 and 44 years old and group B by seven individuals aged between 17 and 42 years old. As for gender, half were boys and the other half were girls, being divided rather evenly - group A had five boys and four girls, whereas group B had four participants of each gender.
During the development of the sessions, it was found that, given the interest of the groups in the topics addressed and the training programme based on an interactive dynamic, the participants were receptive to longer sessions; so, it was possible to address the topics in more detail. It was also found that group A showed a higher ability for reflection and knowledge attainment/consolidation. Group B showed lower maturity regarding interpersonal relationships, displaying higher difficulty in reflective competences and the knowledge attainment and consolidation. Given the participants’ limitations, it was necessary to adapt some topics to be addressed; thus, it was deemed more appropriate to carry out a phased approach with a focus on the quality of content rather than on quantity.
In the end, the SexKen-ID scale was applied again, allowing the comparison with the initial data. The table 1 depicts the categories that emerged from the analysis of responses in the “knowledge” dimension, assessed using the SexKen-ID and the number of responses included therein.
Table 1 Number of mentions in each category of the "knowledge" dimension assessed by SexKen-ID, before and after the intervention
Source: Authors’ production.
From the analysis of the data it was found that the number of records in “do not know”, “did not answer” tends to be smaller in the post programme. This difference is more evident from the second part of SexKen-ID. Noting that the number of responses increased in the areas related to “sexuality and sex education”, “menstruation”, “sexual interaction” and “contraceptive methods” (second part); and “pregnancy, abortion and childbirth”, “sexually transmitted infections (stis)”, “masturbation” and “homosexuality” (third part). There is a more significant reduction in the number of “no response” records in the third part of the instrument.
Many participants did not answer the last group of questions from the SexKen-ID scale, not due to a lack of knowledge about the topics, but because the rules for their application defined that the next group would be assessed only when there was sufficient knowledge of the previous group (Pinto & Nobre, 2011).
The attitudes of the participants towards the sessions showed that the environment created made them free to express doubts related to this topic without restrictions. It should also be noted that although the participants were divided into two groups based on their capacity, both groups ended up revealing a similar level of knowledge. However, group B experienced higher difficulty, requiring longer sessions and greater encouragement to participate and reflect.
4. Discussion
A very heterogeneous population was found, due either to the diversity of pathologies or to the type and origin of the disabilities, which is in line with the literature (Anazi et al., 2017; Pinto & Nobre 2011).
The use of a structured programme, using active strategies adapted to young people with ID, according to the guidelines of SICAD (2016), promoted participation and increased knowledge in the field of sexuality. The literature validates the options followed, as it recommends the development of programmes that respond to the right of these people to receive adequate sexuality education, as well as multimodal interventions, using active strategies adapted to the individual capacities of people with ID (Gil Lliario et al ., 2018; Saxe & Flanagan, 2016; Schmidt et al., 2021; Stoffelen et al., 2017), in line with best practices for interventions aimed at developing the social skills of people with ID (Schmidt, Brown et al., 2020).
The weekly sessions allowed meeting the project's purposes and conveying the idea that sexuality is not just a simple sexual act and that there are interpersonal relationships that must be worked on in order to promote the growth of these individuals (Kürtüncü & Kurt, 2020; Oakes & Thorpe, 2019; Saxe & Flanagan, 2016; Schmidt, et al., 2021; Schmid, Robek, et al., 2020;).
It was found that most participants had low maturity concerning interpersonal relationships, which is in line with the literature (Gil-Llario et al., 2018). Their expressions of affection proved to be consistent with the literature (Kürtüncü & Kurt, 2020; Schaafsma et al., 2017; Schmidt, Brown, et al., 2020; Schmidt, Robek, et al., 2020).
The development of this programme responds to the right of these people to receive adequate sex education (Gil-Llario et al., 2018; Oakes & Thorpe, 2019; Saxe & Flanagan, 2016; Schmidt, Brown, et al., 2020; Stoffelen et al., 2017). These individuals have difficulties and challenges in their day-to-day lives that put them at risk, thus, a continued intervention to deepen the topics covered could be beneficial, enabling them to act more safely and healthily (Schmidt, Brown, et al., 2020; Stoffelen et al., 2017). It is still essential to develop sexual education programmes that integrate people with ID, their parents/caregivers and health professionals (Kürtüncü & Kurt, 2020; Oakes & Thorpe, 2019; Schmidt, Robek, et al., 2020).
Conclusion
The results revealed, in general and across all topics, good knowledge attainment. The intervention with homogeneous groups, according to their characteristics, facilitated the participation and involvement of the participants in the sessions, promoting knowledge gains in the area of Education for Affections and Sexuality.
This investigation identified gaps that people with ID have in the context of their sexuality and how to deal with it, having been implemented a sexual education programme, using the adaptation of another programme already validated in Portugal for young people without ID. Its impact was monitored using an instrument validated for the target population. This study also makes a significant contribution to the paucity of results and literature on the sexual health of people with ID.
Although this study gives an insight into the participation and knowledge acquired by participants with ID, the transferability of the findings is possibly limited, as the study is carried out within just one institution. Customer characteristics, daily activities and culture may differ between organizations. The diversity of the severity levels of intellectual disability, as well as individual capacities, is another limitation of the study. The intervention strategies had to be adapted, almost in a personalized way, to the characteristics and limitations of the participants to facilitate the understanding of the information and their participation in the activities.
The strength of this study is the use of an action-research method that promoted the active participation of people with ID. Most of the research with this population develops the collection of information from indirect sources; with few being those whose source of information is the people with intellectual disability. Our research method provided the possibility for these people, even with different limitations, to participate. In addition, the use of different sources of information enabled a broader understanding of the context and phenomenon under study. This study has important implications for sexual education practices for people with ID, as it recognizes the limited intervention on sexuality that these people receive. It also highlights the need to design and implement inclusive sexual health programmes aimed at people with ID, using adequate, reliable information and strategies adapted to their characteristics. For this, it is essential to look at the integration of parents/caregiver.
Specialized preparation in the area of health professionals, namely nurses, on the sexual development of people with ID, training and training in strategies adapted to the special characteristics of these people is also essential. Attention should be given to the training of nurses and nursing students in these areas; it is paramount to develop the competences of professionals to deal and intervene in the field of education for the affections and sexuality of the individual with ID.
Future research is needed on the sex education of people with ID, namely on the impact of inclusive sex education programmes and strategies used, in order to develop guidelines on information and strategies that are most appropriate to the characteristics of these people, promoting the development of guidelines performance and scientific evidence to support policies in this area.
