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Supporting and Promoting the Sexual Health of adults with an Intellectual Disability Niamh Holland St. Michael’s House Overview of Presentation Intellectual Disability Sexuality of people with ID Sexual Health Issues related to sexual health and ID Relevant research Common themes/Recommendations. Intellectual Disability Intellectual disability is characterised by significant limitations both in intellectual functioning and in adaptive behaviour which covers many everyday social and practical skills. The term ‘Intellectual disability’ reflects society’s views on specific areas of performance. Wolfensberger states that disability is often in the eye of the beholder. Wearing a hearing aid may make it harder to be accepted by others than being actually hard of hearing. Facts and Figures According to National Disability Survey 2006, there are 50,400 people diagnosed with an intellectual disability living in Ireland 40% of whom are women. A significant number or not linked to disability services. Individuals with intellectual disability vary greatly in their experiences, capabilities and wishes. Therefore, generalisations about what is best for people with ID must be treated with caution. Society makes assumptions, seeing the ‘disability’ first, and taking this into account in all types of interaction a person with an intellectual disability has. We decide what a person is capable of. We decide what information should be shared. We want to care and protect. We fear the person’s ability to understand. Sexuality & Sexual Expression : The Irish Context • Foundation of the Irish State (1922) sexual expression not acceptable, purely for procreation. • Church & State • Backlash & Change • Contraception • Homosexuality Sexuality & Intellectual Disability It is difficult to understand the varying attitudes, over the last century, to the sexuality of people with learning difficulties without appreciating the social, religious, cultural and political contexts from which they emerged. Historical Perspectives: - Menace to Society – over sexual - The Eternal Child Each person irrespective of degree of disability has sexual needs and these are linked to emotional health rather than existing in order to thwart staff/families. Sexuality is not an optional extra we can bestow or withhold depending on whether or not some kind of intelligence test is passed. – life long development How people receive information How we learnt about sexuality What messages we were given and how Informal sexual learning happens everyday as we live and interact with the world around us, it includes television, films, music, peers and cultural norms. Formal sexual learning involves participation in structured programs designed to share information, develop skills, or explore attitudes about sexuality, or from home. Regardless of weather information comes from formal or informal learning we all agree that it is most effective when it is presented as a positive aspect of life, is understandable and life long. Learning for individuals with ID Unfortunately for people with ID there tends to be: Less information – individuals with ID are the most educated and yet the least informed - repetition of same basic information i.e. names and functions of body parts. No opportunity for transference of learning - limited opp Negative attitudes - value laden Fewer opportunities for socialisation - 9-5 lives Less ability to learn informally. Reactive teaching (postponement and delays in sharing information) CHOICE V SAFETY One of the challenges for services working with people with intellectual disabilities is how to meet the twin objectives of sexual empowerment and protection An open attitude regarding sexuality and relationship education for people with a learning disability is a preventative factor in terms of Abuse. “The public wants what the public gets, But I don’t get what this society wants, I’m going underground” P. Weller, (1980) Sexual Health Sexual Health - Definitions “Sexual health is the integration of the physical, emotional, intellectual and social aspects of sexual being, in ways that are positively enriching and that enhance personality, communication and love” (WHO) Sexual health is used to mean, not merely the absence of infection, disease, dysfunction or infirmity but a state of general well being (physical, emotional, mental and social in the area of sexuality. Good sexual health means making sure you have the knowledge, skills and ability to make informed sexual choices and acting responsibly to protect your health and the health of others. Rarely do these definitions reflect the lives of adults with ID History of Sexual health and persons with Intellectual Disability The concept of sexual health in persons with intellectual disabilities (ID) is an extremely sensitive subject, and while advances have been made in employment, housing, and many other aspects of community integration, the sexual needs of these individuals have been relatively ignored or strictly controlled by caregivers and service agencies. In the past sexual health largely consisted of preventing reproduction Involuntary sterilisation (Eugenics movement) Paralysed by lack of national policies or initiatives. Sexual Health topics Puberty – life stages Menstruation Menopause* Contraception Safe Sex practices Pregnancy & Parenthood Sexually transmitted infections Sexual Preference – homosexuality Sexual Touch Intimate behaviours – intercourse Masturbation ** Erotic Material Sexual health (Male) Prostate/Testicular screen Sexual Health (Female) Breast/Cervical screening Issue of Consent Consent to Relationships Consent to Sexual activities Consent to treatment or to screening procedures. How is capacity to consent measured. Other related issues Social skills necessary to develop and maintain relationships Access to private places (lack of access to privacy leads to inappropriate behaviours, loss of dignity) Negotiation skills – skills to resolve conflict in relationships Issue of misinformation and misconceptions Lack of appropriate education & training Research Findings Prior to the 1970’s little or no research was conducted on the issue of sexuality as it relates to people with ID. Any studies that have been conducted have tended to focus on the attitudes of staff or parents (caregivers) to issues rather than on asking individuals for their opinions. “ There is one voice that goes unheard: that of people with intellectual disabilities themselves” (Lesseliers, J. 1999) Studies mainly American /Australian and more recently in the UK – and in the past decade more Irish studies. Common themes in research Studies looking at knowledge of individuals regarding aspects of their sexuality demonstrated that knowledge has been partial, inconsistent and often inaccurate with least knowledge regarding sexual health issue’s (STI’s). Men have less knowledge than women and almost no knowledge regarding female sexuality –menstruation. Consistently poor knowledge regarding masturbation Very conservative attitudes to many aspects of sexuality explored. Irish studies addressing the issue of sexual health and ID. Shay Caffrey (1991) SAM & SUE - St. Michael’s House Evans, D.S. (2002). The Development of Personal Relationship and Sexuality Guidelines for People with Learning Disabilities. Final report prepared on behalf of Galway Association Niamh Holland (2004)– Exploring SU’s knowledge and attitudes regarding aspects of their sexuality. St. Michael’s House Elaine Drummond (2006)- supporting sexuality, acknowledging rights, practice and professional issues for working with PWID Sharon Foley /Grace Kelly – HSE project (2009) – (Friendships & taboos) NDA (2010)–(research on ID and crisis pregnancy, parenting &sexual health) Inclusive Research Network (2010) national federation of Vol bodies St. Michael’s House research (2004) To determine what adults with a ID know and think about various aspects of their sexuality. To identify gaps in service users’ knowledge – in order to ensure that when designing sex education programmes these deficits in knowledge could be properly addressed. 40 adults with ID male/female with mild and moderate levels of functioning. Research findings – Areas where weakest scores were obtained: Significant lack of knowledge regarding – sexual health. Subtest which consistently achieved lowest results – birth control and STDs. limited knowledge about HIV/AIDS and also evidence of much misinformation. Lack of knowledge regarding heterosexual and homosexual intimate activities i.e. anal, oral intercourse. Poor knowledge of details of pregnancy*. Lack of knowledge in relation to menopause – only 4 of the 20 women had any knowledge and this was limited. Lack of knowledge regarding masturbation – 14 of the 20 men interviewed felt it could result in pregnancy. 18 out of 20 men interviewed felt masturbation could cause disease Research findings – HSE South Friendships and Taboos (2009) A study commissioned by HSE south to explore the sexual health needs of 18-25 yr olds with mild and moderate ID. Isolation – lack of social opportunities – respondents frequently referred to their 9-5 life Low self esteem Limited social skills Varying levels of realistic expectations Over protection – the right to the “dignity of risk” Strong need to reach those not in disability services Recommendations from HSE research ‘09 Development of national policy – this requires political will. Guidance and supports to create positive rights-based policies within organisations Programmes of training for staff Programmes of training for service users – delivered both within and outside the care settings Programmes needed to ensure staff working within specific sexual health services are aware of the needs of persons with an intellectual disability Evaluation frameworks to evaluate the work and allow for sharing of the learning Further research needed around many issues identified. Breast health Cervical screening Men’s sexual health Breast Health Breast Awareness within ID setting, (Siobhan Kirby 2010) Irish study – found screening much lower compared to general population This study identified the need to support nurses within ID settings with on-going education in relation to breast awareness Breast cancer awareness among women with ID and their experiences (Truesdale-Kennedy et al 2009)-UK study Study found uptake significantly lower than general pop Although women generally had positive experiences they described negative feelings of fear and anxiety due to lack of understanding about the process. New publication in NSW Australia – Being a healthy women – released 2010. Breast health contd. All women should receive the same services as their non disabled peers Obtaining informed consent and ensuring understanding of the procedures requires considerable time and support Even when cognitively women understand what is expected in terms of good breast health they may not have the ability physically to detect fine changes (women with DS) New initiative –Interagency project, developed between KARE, Brothers of Charity Roscommon and Marie Keating Foundation. Breast awareness training. Cervical screening UK Study (Stein & Allen, 1999)- results indicated that 13% of women had cervical smear tests in previous 5 yrs. Mencap study revealed only 8% of women with ID had screens as opposed to 85% without disabilities. Australian study explored women’s experience of smear tests and the overwhelming majority outlined negative experiences where they felt undermined as women. Women’s previous sexual experience hugely important here and often not taken into account Men’s health – Lack of research in the area of men’s health. Research indicates that many men with ID engage in sexual that would leave them vulnerable to STI’s Young men are particularly likely to be deprived of sexual and reproductive information. In general men with intellectual disability are cared for by women either their mothers or female staff – this makes it harder for them to receive accurate information from another man. Common Themes • • • • People with ID have particular needs and face many barriers in accessing health services Accessibility Flexibility Staff with appropriate skills and training Information available in a variety of appropriate formats. People may be at increased risk of STI’s or unplaned pregnancies if they do not receive appropriate education. It is important that all individuals are educated about sex and given the opportunity to explore, enjoy and express their sexuality in positive and healthy ways. Criteria to assess suitability of materials Ease of understanding Content Simplicity Factually correct Not value laden Adaptable – diff levels Relevant Sensitivity Well structured Layout – materials Clear / concise Attractive yet realistic Use of visual aids Range of activities Teaching prompts / handouts, OH’s Conclusion Like everyone else, people with intellectual disabilities have sexual and reproductive health needs throughout their lives, and these needs change over the lifetime. Individuals require the same information, supports and services that their non-disabled peers, what needs to be different is how these supports and services are provided. It is never to early to address sexuality and give clear factual age appropriate information Nothing about us without us…... “Ignorance is not bliss, it is dangerous” J. Ager, (1998)