Abstract
The European countries have traditionally viewed individuals with intellectual disabilities as being sexually deviant. Even though a theoretical paradigm has emerged in this particular area, with negative feelings less enveloping in the world today, individuals with intellectual disability continue to be sexually impoverished as well as experiencing a disenfranchised sexual identity. Previous studies in this area have emphasized the attitudes of parents, staff, society, and individuals with intellectual disabilities. Research indicates that hindrances to sexual expression may possibly appear in the form of negative attitudinal obstacles from others, which might contribute to the establishment of a self-gratifying prophecy, with individuals with an intellectual disability withdrawing from taking pleasure in sexual experiences as well as relationship. The approach in which attitudes are portrayed also tremendously influences the quality and type of sexual experience that individuals derive. Relevant literature in this area reveals that a number of studies focus on the attitudes that are expressed by parents or staff with little importance given to the personal account of the sexual knowledge of the people living with intellectual disability.
Introduction
The issue of sexuality is a very critical aspect of an individual’s health, lifestyle, identity, orientation, and the way in which a person’s body operates. Galea at el (2004) agrees that is not contention as to whether individuals are sexual beings, though, the juxtaposition connecting intellectual disability and sexuality, has produced beliefs that individuals with intellectual disability are sexless, overly promiscuous, or eternal children. These conflicting views have helped in shaping an array of mistakes that have generated a eugenics practice. Some actions and behaviors towards individuals living with intellectual disability include sexual subjugation as well as involuntary sterilization.
The doctrines and values of normalization as well as social role enhancement, which have progressively been immersed into the European nations has implied that the right’s based position for individuals with intellectual disability has changed in terms of accessibility to employment, socialization, and education. So far, the right for an individual with intellectual disability to optimize their sexual ability in terms of their sexual wellbeing, engaging in a relationship, having sexual exposure or intercourse, or procreating is still not realized. Lesseliers (1999) finds that individuals with intellectual disability hardly gain the access to correct and precise sexual knowledge and whenever they do obtain such information, it is given wrongly in an effort to discourage it. Individuals living with intellectual disabilities may also lack the private as well as a safe place to participate in sexual activities. It can be said that there appear to surface a fused arrangement of institutional practices including staff, parental, and communal attitudes; obstacles such as reduced sexual knowledge and information, and the problem of sexual abuse that will impact individuals with intellectual disability, will have a sexual connection and whether it will be harmful or helpful.
The researcher bear in mind that when undertaking a descriptive phenomenological study, the creation of a review of literature is accomplished after data collection as well as data analysis is achieved. Nevertheless, in keeping with the research procedures of this proposed study, the researcher is required to perform a literature review before any form of data dissemination is done. The decision to undertake this particular study has been fundamentally influenced by the researcher’s own personal experience with people living with intellectual disabilities. A clear picture appears to be a professional uncommunicativeness in championing the sexual rights of people with intellectual disabilities. Nurses are trained in order to observe, listen, and support the bio-psychosocial requirements of persons under their care. This study is intended to assist in liberating as well as addressing the issues surrounding persons living with intellectual disabilities as it relates to their sexual experiences that may have been hitherto deprived.
Problem statement
Literature continues to reveal that barriers to sexual experience, including structural barriers, greatly influence and affect people with intellectual disabilities. Moreover, research on parental attitudes indicates that many parents hold restrictive attitudes principally as it correlates to their children becoming parents or engaging in relationships. Most parents seem to protect their children from the potential harm that sexual maturity brings. Therefore, the corollary of this may imply keeping their children in a state of suspended adolescence, which in return denies children any chance of creating intimate relationships. There is an apparent and urgent need for education programs that are aimed at parents in efforts to support them in their transition as well as provide psychosexual support to their children.
Research question
What are the sexual experiences of persons with a mild intellectual disability?
Research aims and objectives
The major aim of this research is to investigate the sexual encounters of persons with mild intellectual disability as it occurs in their daily lives. The objectives of this study include;
- To examine the sexual experiences of persons with mild intellectual disability
- To ascertain whether sexual knowledge affects the nature of sexual experience
- To establish the factors that facilitate or hinder the sexual experiences of persons with mild intellectual disability
Review of relevant literature
In observance with Parahoo’s (2006) definition of literature review, this study will present an evaluation of the body of information that surrounds sexuality as well as sexual experiences of persons with intellectual disabilities as a way of identifying the issues in the literature, which may facilitate attention for future empirical studies on this particular problem. The most salient themes that emerge from the literature include sexual knowledge and experience of persons with intellectual disability, obstacles to sexual expression, and attitudes of both the staff and parents. Searches of electronic information including Proquest and Cinahl will be utilized given their scientific importance to the study of nursing.
Sexual knowledge and attitudes of persons with intellectual disability
The attitudes, as well as knowledge of persons with intellectual disability, bear acute importance to the quality of their life. The very intend and nature of support required by persons with intellectual disability may be recognized through the examination of their sexual information as well as attitudes. Many inquiries into the subject remain consistent that persons with intellectual disability have inaccurate sexual information and misconceptions as compared to those without intellectual disability. Many other reports from sex professionals indicate that persons living with intellectual disabilities are also prone to untrue dangers in order to make them afraid of sexual expression. Moreover, it has been found out that persons with intellectual disability experience lower and reduced levels of sexual knowledge; possess stronger sexual requirements; and more negative attitudes to sex as compared to individuals with a physical disability. It has also been found that individuals with intellectual disability experience deficits of sexual knowledge concerning contraception, pregnancy, menstruation, as well as sexually transmitted diseases. Poor sexual information and knowledge related to low sexual activities and inadequate sexual education. Therefore, sexual information plays a critical role in the capacity of people to consent to sexual activity.
Garwood and McCabe (2000) evaluated both the knowledge and attributes of six men with a mild intellectual disability after receiving sexual education. Using the experience, sexuality, knowledge, and needs scale for individuals with intellectual disability were analyzed in matters relating to sexual intercourse, dating, and marriage. Finding from Garwood and McCabe’s (2000) reported that post-education individuals remained resistant towards hugging without clothes on, masturbation, parenthood, and oral-genital sex. Garwood and McCabe (2000) inferred that rather than being client-led, the contents of sexual education programs were service-led. Kelly et al (2009) also found out that of the five women under sex education, only two of the women received it by means of structural format. In a phenomenological study by Lesseliers and Van Hove (2002) indicated that the knowledge from 146 individuals with intellectual disability under study was basic, with an knowledge of the functions of genitals being nonexistent, and only a few of these individuals having knowledge on how children are conceived.
Moreover, a study by McCabe (1999) also established that regardless of the greater sexual needs, persons with intellectual disability had conservative attitudes in relation to sexuality. McCabe ‘s (1999) results were highly consistent with another study by Thomas and Kroese (2005), which found persons with intellectual disability with more negative attitudes in regard to homosexuality, masturbation, and pornography as compared with persons without intellectual disability. Both studies revealed that negative attitudes among persons with intellectual disabilities could have been a result of repressive attitudes from staff and parents. Lesseliers (1999) concurs that such unjust circumstances place individuals in a suppliant position, which should be regarded as unfit for an adult.
Barriers to sexual experiences
Barriers to the sexual experience of persons with intellectual disabilities are many and diversified. Barriers to sexual experiences imply those factors or obstacles that prohibit or prevent sexual experience among persons with intellectual disabilities. Structural barriers or obstacles such as lack of privacy may prohibit persons with intellectual disabilities from engaging in any sexual activity. Structural barriers to sexual activities may also lead to the internalization that prohibition means sex is something that is impure (Lessiliers, 1999).
Methodology
Data collection and research design
This section will present an assessment of the study methodology for this study. This research will utilize a descriptive phenomenological qualitative design in order to collect more in-depth information in understanding the sexual experiences of persons with mild intellectual disability. Moreover, this research will apply a purposeful sample of six persons with mild intellectual disabilities. Data for this particular research will be acquired using semi-structured interviews. In addition, data disseminated will be treated using Colaizzi’s (1978) evaluating framework for the phenomenological analysis. The methodological qualitative rigor of this research will be discussed as it is seen using key qualitative research concepts such as reflexivity, trustworthiness, conformability, as well as transferability. In addition, a pilot study, as well as ethical considerations, will be analyzed in this study.
Data analysis
In order to offer a detailed description of the critical structure of the sexual experiences of individuals with mild intellectual disability, Colaizzi’s (1978) evaluating framework of analysis will be used. Data analysis in qualitative research commences with looking for the establishment of recurring themes through the use of a framework. The most significant feature of Colaizzi’s framework is that validation of the study must be provided as well as verified through the respondents who have provided the description of their sexual encounters.
The radio-taped interviews to be utilized in this research will be transcribed according to Colaizzi’s (1978) guidelines. Each individual transcription will be read repetitively in order to determine the sense out of the entire content. All the tapes will be duplicated in order to avoid data loss. Moreover, such tapes will be stored in accordance with data protection policies available. The researchers will read as well as listen to the data, and given their phenomenological exposure, prevent data inaccuracies. All other similar themes for this research will be classified and given titles. In maintaining and observing the process of bracketing in phenomenological research, this study will place all the existing assumptions as well as biases in remission, so as not to influence the data.
Discussion and findings
This section is concerned with the presentation of results that the researcher feels will be accomplished throughout this study. The outcome of this research will be presented along with the anticipated dissemination, time scale, as well as costs.
It is expected that this research will divulge the sexual experiences of persons with mild intellectual disability as told from their own and personal experiences of daily lives. Moreover, this study will determine the sexual knowledge that affects the experiences of the participants and reveal the system of education available to the participants. In addition, the study will also unveil the issues that have affected individuals with mild or moderate intellectual disability.
The results from this particular study may be used to draw recommendations for future practice as well as policy development. These findings will be the unique accounts of people living with intellectual disabilities.
Conclusion
This study on the experiences of persons with a mild intellectual disability intends to add to the body of research and may be presented for publications. It is targeted at people who support individuals with mild intellectual disabilities, including service providers and families. It is also intended that this study will inform policymakers on ways to best meet the needs of people with intellectual disabilities.
References
Colaizzi, P.F. (1978). Psychological research as the phenomenologist views it. In Existential-Phenomenological Alternatives for Psychology, Oxford University Press, New York
Galea, J., Butler, J., Iacono, T., & Leighton, D. (2004). The assessment of sexual knowledge in people with intellectual disability. Journal of Intellectual & Developmental Disability, 29, 4, 350-365.
Garwood, M., & McCabe, M. P. (2000). Impact of Sex Education Programs on Sexual Knowledge and Feelings of Men with a Mild Intellectual Disability. Education and Training in Mental Retardation and Developmental Disabilities, 35, 3, 269-83.
McCabe, M. P. (1999). Sexual Knowledge, Experience and Feelings Among People with Disability. Sexuality and Disability, 17, 2, 157-170.
Lesseliers, J. (1999). A Right to Sexuality?. British Journal of Learning Disabilities, 27, 4, 137-140.
Lesseliers, J., & Van, H. G. (2002). Barriers to the Development of Intimate Relationships and the Expression of Sexuality Among People With Developmental Disabilities: Their Perceptions. Research and Practice for Persons with Severe Disabilities, 27, 69-81.
Parahoo, K. (2006). Nursing research: Principles, process, and issues. Basingstoke: Macmillan.
Thomas, G., & Kroese, B. S. (2005). An investigation of students with mild learning disabilities reactions to participating in sexuality research. British Journal of Learning Disabilities, 33, 3, 113-119.