Download Sexuality and Relationships Training Group

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
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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
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•
•
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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)