Transcript Title here - ESRC: Economic and Social Research Council

The Changing Sexual Lives of Young People
with Learning Disabilities
Jaycee Pownall
Academic Unit for Mental Health and Wellbeing
University of Glasgow
What is Sexual Health?
“Sexual health is a state of physical, emotional, mental &
social well-being in relation to sexuality; it is not merely the
absence of disease, dysfunction or infirmity.
Sexual health requires a positive & respectful approach to
sexuality & sexual relationships, as well as the possibility of
having pleasurable & safe sexual experiences, free of
coercion, discrimination & violence.
For sexual health to be attained & maintained, the sexual
rights of all persons must be respected, protected & fulfilled”
World Health Organisation Department of Reproductive Health & Research
Sexual Health & People with Learning Disabilities
In the past people with learning disabilities were not viewed as
having a right to sexuality compared to others in society –
‘Eternal Children’ or ‘Potentially Dangerous’ (McCarthy, 1999)
Sexuality is still perceived to be a ‘private’ issue (Shakespeare,
2000)
Lower levels of knowledge, less sexual experience, more negative
attitudes, high levels of unmet needs, strong desires to know
more, lack of autonomy and knowledge of how to access
information
(Cheng & Udry, 2003; McCabe, 1999; McGillivray, 1999; Morrison, 2006;
Szolios & McCabe, 1995)
Barriers to Sexual Development & Expression
Young people with learning disabilities (LD) can be confronted with many
barriers to their sexual development and expression
 Young people with learning disabilities experience difficulties in
grasping key health-related concepts
 Opportunities to learn about sex may be fewer
 Negative or obstructive attitudes from others
 Having fewer opportunities to socialise with friends and develop
friendships or intimate relationships
 Having fewer sources for sexuality-related information
 Remain closely supervised by family/carers
 Being protected by parents, often from concerns over abuse
(Ailey et al., 2003; Almack, Clegg, & Murphy, 2009; Cole and Cole, 1993; McCabe, 1999;
Stalker, 2002)
Aims of the Research
 To explore the perspectives of young people with LD & their nondisabled peers in relation to their sexual knowledge, attitudes
and experiences
 30 with an learning disability, 30 with no disability
 Aged 16 - 21
 Questionnaires and in-depth interviews
 Understandings and misunderstandings (social rules, physical
changes and puberty, reproduction, contraception and STIs)
 Sources of sexual health information
 Opportunities to develop friendships
relationships (their social networks)
and
more
intimate
 Young people’s thoughts and feelings about sexuality, e.g. their
worries and anxieties, what they wanted to know more about
Results: Sexual Knowledge
Learning Disability
No Disability
Total Score
39.13
87.1
t (58) = -11.375
Legal Aspects
3.03
5.48
χ2 (1) = 27.993
Physical Changes
6.07
17.6
χ2 (1) = 39.958
Reproduction
12
20.8
χ2 (1) = 38.403
Contraception
9.83
23.2
t (58) = -13.367
STIs
8.2
20.1
t (58) = -10.576
– Scores could range from 0 – 133
– The independent t-test was used to explore differences when data was normally distributed; the KruskalWallis test was used for data that was not normally distributed. All p < 0.001
Sexual Knowledge cont.
30
26.7
25
21
21
19.7
20
Score
16.5
15
11.9
10
9.5
7.43
5
0
Intellectual Disability
No Disability
Intellectual Disability
Reproduction (max. 23)
No Disability
Contraception (max. 45)
Males
Females
Sexual Knowledge & Physical Disability
9
8.3
8
7
6.8
6.7
6.5
6
5.6
Score
5
5
4
3
2
1
0
Sexual Health
No Disability
Physical Disability
Alcohol
Learning Disability
(Source: Pownall, 2010)
Lack of Knowledge & Negative Feelings about Sex
“At first it made me
feel sick and then I
thought we will have
to do it when we are
older” (Female, aged 16)
“Getting infections… like
you're not wanting to do it”
(Female, aged 16)
“It gets scary when you talk about all the diseases we can get off of women, that they
might be falling in front of you and you do it and in the morning you think you’ve got
the disease they’ve already had” (Male, aged 17)
Sources of Information
Where did young people get their information from?
5
23
30
8
H.P.
H.P.
Family
School/College
30
11
School/College
Friends
20
Family
Media
Media
23
Learning Disability
Friends
26
No Disability
27
Sources of Information
Talking to Friends and Family
5
23
30
8
H.P.
Family
27%
11
H.P.
School/College
30
School/College
Friend
37%
20
Family
67%
Media
Media
23
Learning Disability
Friends
87%
26
No Disability
27
Sources of Information
Talking to Health Professionals
5
23
8
30
H.P.
17%
H.P.
77%
Family
School/College
30
School/College
11
Friends
20
Family
Media
Media
Friends
26
23
Learning Disability
No Disability
27
Sources of Information
Television, Films and the Internet
5
23
30
8
H.P.
H.P.
Family
School/College
30
School/College
11
Friends
20
Family
Media
Media
Friends
26
23
Learning Disability
No Disability
27
Sources of Information
Where did young people get their information from?
5
23
30
8
H.P.
H.P.
Family
School/College
30
11
School/College
Friends
20
Family
Media
Media
23
Learning Disability
Friends
26
No Disability
27
Social Networks
28
Other
26
24
22
Number of Persons
20
18
Friends
16
14
12
10
8
Other
Friends
6
Family
4
2
Family
0
Intellectual Disability
No Disability
The Importance of Having Friends
Young people with learning disabilities frequently discussed
feeling lonely and isolated
P: I get lonely sometimes, in the summer (male, aged 17)
P: Eh well they [friends] stay too far away from me so I don’t really
[see them]…
I: How do you feel about that?
P: Kinda fed up because I’ve got nothing to do…I just stay in mostly
and go on the computer (male, aged 17)
I: Do they [parents] let you do your own thing?
P: Erm no, not most of the time…well if I want to do something
they'll have to come with me ‘cos they are awful protective of me
I: How does that make you feel?
P: Ok, because they love me, but annoyed, ‘cos I want to go out
sometimes, do stuff (female, aged 19)
[Not] Talking to Family & Friends
Talking to Parents
I’d be too embarrassed to talk to her…She probably would be worried
but I think she knows I’m not interested in any of that the now so
(female, aged 18)
P: I would be embarrassed if I said it to them
I: How would they would feel about talking to you about sex?
P: Probably upset…well my mum would get upset…because she’d
probably start crying or something (male, aged 19)
Talking to Friends
You might, you might feel a bit embarrassed talking to your friends
about it as they might start laughing at you and making fun of you
(male, aged 20)
Feelings of Guilt & Shame
You might get you into trouble, if you get caught [looking on the
internet] (male, aged 18)
Key Messages from the Research
 Young people with learning disabilities were less
knowledgeable about sexual matters. This was not simply
about ability
 They reported having much smaller social networks, and fewer
sources of sexual information than the non-disabled peers
 The young people with learning disabilities expressed a large
number of misunderstandings about sexuality and sexual
health. This was linked to feelings of vulnerability and distress
 Young people felt embarrassed about seeking sexual
information and held negative views about sexual intercourse
 Relying more on family did not mean that they felt that they
could speak to their families, nor did they feel confident raising
this subject with health professional
 Young people with learning disabilities expected that their
parents would react negatively toward them asking questions
about sex and developing sexual interests
Implications of Research Findings
 The risk of sexuality remaining a ‘private’ issue that can not be talked
about openly is that it takes on negative connotations and is seen as
being ‘dirty’ or ‘taboo’, associated with embarrassment and shame
 Provide young people with clear, concise information about sex and
relationships
Working with schools and colleges
 Many of the young people felt that their sex education classes failed to
address their questions:
“Like um spending more time with your partner and all that, just a bit
how, perhaps people tell you a bit more about how relationships work
and stuff” (female, aged 21)
Working with Health professionals
 GPs and other professionals should be proactive about discussing
sexual matters with young people, as embarrassment or fear of
negative responses may prevent them from seeking the information
 This may also reflect poor awareness of the services available to them
Mothers’ Perspectives
(Pownall et al., in press)
Working with Parents
 Being in a more dependent ‘child-like’ role is likely to make it more
difficult for the young person to have the confidence to ask
questions or raise concerns about sexual matters
 Mothers tended to take a reactive approach, responding to their
offspring’s questions, not initiating discussions
 Mothers lacked information and there was lack of support available
to parents to help them address their children’s sexual needs
 Educationalists, medical practitioners and those providing social
care also need to be more aware not merely of the need to support
young people themselves with regard to their developing sexuality,
but to be proactive about talking with families, who may also find
this an embarrassing and sensitive issue to raise with professionals.
 Parental concern with their daughters’ potential vulnerability may
result in them being more sheltered
 A lack of knowledge is likely to make the young people more, rather
than less vulnerable
Research Team
Dr Jaycee Pownall
Professor Andrew Jahoda
Academic Unit for Mental Health and Wellbeing
University of Glasgow
[email protected]
http://www.gla.ac.uk/departments/mentalhealthandwellbeing/
References
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