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Sexuality and individual support plans for people with intellectual disabilities: A study on the content of ISP

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Background: Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents. Method: Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed. Results: A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents. Conclusions: Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.
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Sexuality and individual support plans for people with
intellectual disabilities
J. M. T. Stoffelen,
1,2,3
M. A. Herps,
1,2,4
W. H. E. Buntinx,
1,5
D. Schaafsma,
6
G. Kok
1,2
& L. M. G. Curfs
1,5
1Maastricht University Governor Kremers Centre, Maastricht, Limburg, Netherlands
2Maastricht University Faculty of Psychology and Neuroscience, Maastrich, Limburg, Netherlands
3Zorgbelang Gelderland en Utrecht, Arnhem, Netherlands
4Vilans, Utrecht, Netherlands
5Maastricht University Medical Centre, Maastricht, Limburg, Netherlands
6Fontys University of Applied Sciences, Eindhoven, Netherlands
Abstract
Background Sexual rights and sexuality are important
aspects of quality of life, also for people with
intellectual disabilities (IDs). However, providing
support in this area to people with ID poses some
challenges. In this study, the content of individual
support plan (ISP) documents was analysed to
determine the extent to which sexuality and sexual
rights are addressed in part of the ISP documents.
Method Content analysis was carried out on a
sample of 187 ISP documents from seven different
service provider organisations in the Netherlands.
First, we conducted a lexical search using terms
related to sexuality and sexual health. The retrieved
segments were then analysed.
Results A total of 159 ISP documents (85%) of 60
men and 99 women contained some reference to
aspects of sexuality. However, these references were
mostly descriptive and offered little guidance in terms
of providing support. Moreover, these notations
mostly described negative or problematic aspects of
sexuality. References to sexual education, treatment,
intervention programs or support strategies were
rarely found in the ISP documents.
Conclusions Although sexuality is addressed in most
ISP documents, there is little information available
about the provision of professional support in this
area that would give people the opportunity to exert
sexual rights. As sexuality and exerting sexual rights
are important for people with ID as well as for other
people, it is recommended that issues surrounding
proactive sex education, shared decision-making and
the implementation of sexual healthcare plans are
addressed in the ISP.
Keywords individual support plans, sexuality,
sexual rights
Background
Individual support planning
Individual support planning (ISP) has become a key
aspect of support for people with intellectual
disabilities (IDs) in many countries around the world
(Schwartz et al.2000; Robertson et al.2007) and is
regarded as a key aspect of person-centred support
(Robertson et al.2007). It refers to the process of
developing, implementing and evaluating individual
1
Correspondence: Joke Stoffelen, Maastricht University Governor
Kremers Centre Maastricht, Limburg, Netherlands (e-mail: joke.
stoffelen@maastrichtuniversity.nl; jokestoffelen@planet.nl).
Journal of Intellectual Disability Research doi: 10.1111/jir.12428
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution
and reproduction in any medium, provided the original work is properly cited.
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goals and objectives in terms of personal outcomes.
The ISP document is the written or digital document
that describes these goals and objectives (Thompson
et al.2009; Herps et al.2013) and thus should reect
the current support that is provided to enhance
personal outcomes (Thompson et al.2009). The
content of the ISP document should be based on an
ongoing dialogue between staff and the person
regarding the individuals wishes and preferences, but
research has shown that people with ID are not always
meaningfully involved in this process (Williams &
Robinson 2000; Herps et al.2013; Herps et al.2016a).
Balancing different perspectives and developing an
ISP document that incorporates the provision of
professional support can be difcult when conicting
interests arise or when sensitive subjects are addressed
(Tuffrey-Wijne et al.2007; Wagemans et al.2010).
For the purpose of this study, we chose the topic of
sexualityas an example of a sensitive and perhaps
difcult subject in terms of providing support for
people with ID and studied the extent to which this
topic is addressed in ISP documents. We are aware of
only one other study that has researched the topic of
sexuality in ISP documents. Stancliffe et al.(1999)
studied the content of 126 ISP documents and found
no individual goals on sexuality.
Sexuality and sexual rights of persons with ID
People with ID have human rights (Stainton & Clare
2012), including sexual rights. The World
Association for Sexual Health (2014) has specied the
number of sexual health rights, including the right to
privacy, the right to sexual health, the right to
marriage and to start a family, the right to decide on
the number of children, the right to information and
education, the right to freedom of opinion and
expression and the right to protection of these rights.
According to the American Association on
Intellectual and Developmental Disabilities
(AAIDD), These sexual rights and needs must be
afrmed, defended, and respected(in Position Statement
SexualityAAIDD 2008).
Denitions of sexual rights
Three authoritative organisations have dened sexual
rights from the perspective of human rights: the WHO
(2015), the World Association for Sexual Health
(WAS 2014) and the International Planned
Parenthood Federation (IPPF 2003). Although not
specically written for people with ID, people with ID
also have sexual needs, wishes and questions, as well
as sexual rights that need to be addressed (UNCRPD
2006; AAIDD 2008, article 25), and sexuality and
sexual health are as such important and constitute a
part of the concept of quality of life (Schalock et al.
2010). Nussbaum (2014,p.57) describes sexuality as
an essential human capability: Having the opportunity
for sexual satisfaction and choices about reproduction,
and states that it is important to protect this.
Sexual rights and people with ID
However, understanding sexual rights and exercising
these rights in daily life are not always straightforward
for people with ID. Richards, Miodrag, Watson,
Feldman, Aunos, Cox-Lindenbaum & Grifths (2009,
p. 211) conclude that sexuality is a complex and
unresolved issue due to the imposition of a social construct
and the continued pathologizing of the disability itself.
People with an ID experience a variety of problems in
the area of sexuality. They do not always get the respect
and support that is needed (Watson et al.2002; Ignagni
et al.2016). Issues such as overprotection along with a
lack of skills and knowledge can make people with ID
vulnerable to sexual abuse (Murphy et al.2007;
OCallaghan & Murphy 2007; Hollomotz 2011).
Individuals with ID are more likely than the general
population to have had negative sexual experiences or
to have been sexually abused (Abbott & Howarth 2005;
Reiter et al.2007; Hickson et al.2008; Eastgate et al.
2011; Van Berlo et al.2011; Stoffelen et al.2013). People
with ID often face resistance in their direct
surroundings when it comes to exerting their sexual
rights (Bernert 2011; McGuire & Bayley 2011), and the
need for privacy in residential settings is often badly
recognised (Hollomotz 2008). Family members and
other support providers set different norms for
themselves (or other people without disabilities) than
for people with ID (Christian et al.2002; Yool et al.
2003; Swango-Wilson 2008). Information about
sexual rights is often not easy to understand by people
with ID (Abbott 2013), and they receive less sexual
education than people without disabilities (Schaafsma
et al.2013). Furthermore, some people with ID have
difculties memorising the information that is
presented during sexual education (Löfgren-
Mårtenson 2012). Having had less sexual education or
2
Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
not having had tailor made sex education can result in
people with ID having less knowledge about topics such
as masturbation, pregnancy, safe sex, reproduction and
sexual diversity, as compared with peers without an ID
(Leutar & Mihoković2007; Healy et al.2009; Kelly et al.
2009; McCarthy 2009; Schaafsma et al.2017).
Moreover, the social, communicative and decision-
making competences of some individuals with ID are
limited (Hayashi et al.2011). Finally, although sexual
education materials for people with ID have been
developed, people with ID and their caregivers are
rarely or not involved in the development of such
materials (Schaafsma et al.2015). This is in spite of
research which shows that active involvement of the
target population is one of the conditions for the
development of effective health promotion or
education programs (Bartholomew Eldredge et al.
2016). An example of research involving people with an
ID is the study of Frawley and Bigby (2014).
Aim and research questions
The complexities surrounding sexuality and sex
education, alongside issues regarding sexual rights,
suggest that sexuality is an important issue for people
with ID and should as such be addressed in ISP
documents. Furthermore, Dutch policy
requires sexuality to addressed in ISP documents
(Herps et al.2016a).
.In line with this, the aim of the present study is to
understand to what extent sexuality, sexual health and
sexual rights are mentioned in such documents. The
study has an exploratory and descriptive design. The
research questions are outlined in the succeeding texts:
1To what extent are sexual healthand sexual rights
mentioned in the ISP documents of people with ID?
2When references are made to sexuality in ISP
documents, what subjects or issues are covered?
3How is support provided to people with ID with
regards to aspects related to sexual health and sexual
rights described in terms of individual support goals?
Methods
Procedure
For the purpose of this study, we used data that were
collected by Herps et al.(2016b). From the original
sample of eight organisations, data of one
organisation could not be used because the authors
could not consult the full ISP document but rather
only an excerpt of individual goals and resources as
described in those excerpts. This resulted in a
sample of 187 ISP documents of people with ID
from seven service providers in the Netherlands.
These organisations all provide residential support to
people with IDs and are located in the north (n=2),
the middle (n=1) and south (n=4) of the
Netherlands. Two organisations provide residential
support to more than 2000 people with ID, four
provide between 1000 and 2000 people with ID
support and one organisation provides less than 1000
people support.
The ISP documents constituted a total of 3444
pages with individual ISP documents ranging
between 4and 76 pages (M=18.42;SD=9.88). The
ISP documents belonged to 95 men with ID and 92
women with ID, aged between 20 and 83 years
(M=43.14;SD=13.97). Table 1shows the
demographic characteristics of the present sample.
Information regarding the degree of the disabilities
was either found in the ISP document or, when the
information was not found in the ISP document, was
provided by the organisation.
Analysis
Content analysis was completed on all 187 ISP
documents. The denitions of sexual rights were used
to develop search terms (Appendix A). A lexical
search using these search terms was carried out on all
ISP documents using the qualitative data software
program MaxQDA. The lexical search identied
paragraphs in which at least one of the search terms
was present.
The lexical search resulted in 6185 segments being
identied, of which 270 segments were found to be
relevant in the context of the research questions.
Selection of relevance was assessed by carefully
reading the segment, determining if it was related to
the research questions and then coding it using a
codebook. For example, 3979 segments were found
in the lexical search for relations. Many segments in
which this term was found were, however, not
related to sexual relations, but rather referred to
interpersonal relationships with, for example, family
or friends. Search terms that included education,
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Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
privacyand rightsled to segments being identied
that were unrelated to the topic of this study. These
segments were not relevant in the context of our
research questions and therefore not included in
the analysis.
We identied eight themes on which segments were
coded. These themes were sexuality, sexual health,
information and sexual education, developing and
maintaining relationships, physical contact, parenting
or the desire to be a parent, privacy and joining an
advocacy group related to sexuality. The relevant
segments were then independently coded on these
themes by two researchers with an agreement rate of
99%. The researchers discussed any differences until
consensus was reached. By using a structured coding
system, all paragraphs were coded. Our analyses are
shown in Table 2.
Finally, any goals that were found in ISP
documents (Herps et al.2016b) were read and coded
as to whether they were related to the topic of the
present study or not.
Results
Relevant segments in individual support planning
documents
Relevant segments were found in 85.0%(N=159)of
the ISP documents. In 77 ISP documents, segments
related to one topic/domain/search term were found;
in 54 ISP documents, we found segments on two
search topics; in 27 ISP documents, we found
segments related to three different search topics; and
in 15 ISP documents, we found segments related to
four different search topics.
Content and nature of references to sexuality in
individual support planning documents
Table 3presents the eight themes that we found,
relating to demographic information of the people
with ID whose les contained information related to
these themes (age, gender and level of ID). The most
4
Table 1 Level of ID and age of people in the ISP sample
Level ID
Age Mild (%) Moderate (%) Severe (%) Profound ID Unknown (%) Total %
2034 25 (13.4) 13 (7,0) 12 (6.4) 3 (1,6) 2 (1.1) 55 (29.4)
3549 16 (8.6) 25 (13,4) 18 (9.6) 9 (4,8) 3 (1.6) 71 (38.0)
50+ 11 (5.9) 20 (10,7) 18 (9.6) 8 (4,3) 4 (2.1) 61 (32.6)
Total 52 (27.8) 58 (31,0) 48 (25.7) 20 (10,7) 9 (4.8) 187 (100)
Table 2 Quantitative results of the original lexical search
Results 187 ISP documents Relevant segments
Themes ISP documents (%) Hits (n) ISP documents (%) n
Sexuality 92 (49.19) 236 56 (29.95) 87
Sexual health 116 (63.04) 761 31 (16.58) 53
Information and sexual education 15 (8.02) 17 4 (2.14) 4
Developing and maintaining relationships 184 (98.39) 3.979 20 (10.70) 64
Physical contact 111 (59.36) 404 18 (9.63) 23
Parenting/desire to be a parent 115 (61.49) 321 27 (14.44) 36
Privacy 55 (29.41) 86 3 (1.60) 3
Joining advocacy groups 101 (54.01) 381 0 0
Total 789 (422.91) 6.185 159 (84.61) 270
Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
striking ndings regarding the eight themes are
described in the succeeding texts.
Sexuality
We describe the following aspects regarding sexuality:
(non)sexual behaviour (a description of behaviour of
the individual with ID that may look sexual, but is
interpreted as non-sexual behaviour) and sexual
preferences. We also describe ndings that indicate
that the individual has been sexually abused. We
found these results in 56 ISP documents.
(Non)sexual behaviour
Eight ISP documents described how the individual
expresses his or her sexual needs (in some
documents, we found information about more than
one expression); masturbation was found in six
(3.21%) ISP documents, the use of specialised sexual
service provision in one ISP document (0.53%) and
the use of porn and chat rooms in three ISP
documents (1.60%). One ISP document described
that the person had used an alternative dating service
but that this has not been followed up as his parents
and group home could not agree upon it. It did not
state how the person is expressing his sexual needs
instead.
Furthermore, several ndings relate to a
description of behaviour of the individual with ID that
may look sexual, but is interpreted as non-sexual
behaviour. Refer to, for example, these two quotes:
The individual is aware of her body. She is not sexually
active. She does like to be touched and tickled, but this
carries no sexual meaning for her.(Woman, 45 years
old, profound ID)
He has a girlfriend in his group home. This is expressed
in holding hands and often sitting together. He likes to
cuddle;this is not something sexual for him but rather
has to do with attention and attachment.(Man,
52 years old, moderate ID)
In 13 ISP documents (6.95%), reference was found
to the individual showing inappropriate or inhibited
sexual behaviour. In three cases, this behaviour was
linked to the individual having been sexually abused.
Yet none of these ISP documents contained
information about treatment or support regarding
these issues, nor was there any reference to other
(professional) treatment plans.
Sexual preferences
With regards to sexual diversity, two ISP documents
(1.06%) noted that the individual concerned has
interest in a partner of the same sex.
Sexual abuse
In 12 ISP documents (6.24%), reference was made to
sexual abuse of the individual. Four ISP documents
disclosed that sexual abuse of the individual had led to
trauma. In two ISP documents, treatment of this
trauma was mentioned.
Individual has had Psychomotor Therapy in 2006 and
2007. The reason for this was a posttraumatic stress
disorder stemming from alleged sexual abuse. She shows
5
Table 3 Information of the people with ID and the domains
Gender Age Level of intellectual functioning
Themes nMale Female MSD Mild Moderate Severe Profound Unknown
Sexuality 56 29 27 42.39 12.80 11 21 18 3 3
Sexual health 31 2 29 39.87 13.24 11 121 3 5 0
Information/education 4 3 1 39.50 12.42 1 2 0 0 1
Developing and maintaining relationships 20 7 13 43.40 13.90 12 8 0 0 0
Physical contact 18 10 8 42.38 14.10 2 0 7 9 0
Parenting/desire to be a parent 27 8 19 43.74 15.19 11 10 4 2 0
Privacy 3 1 2 49.69 12.04 0 2 1 0 0
Joining advocacy groups 0 0 0 0 0 0 0 0 0 0
Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
signs of impulse control disorder.(Woman, 46 years,
level of ID unknown)
Sexual health
Sexual health refers to the (access to and use of)
contraceptives. Table 3shows that results were mostly
found in ISP documents of women. In most
instances, contraceptives were used as a remedy for
premenstrual syndrome or problem behaviour during
menstruation. In one ISP document, it was made
explicit that contraceptives were used to prevent
pregnancy. In six ISP documents, it was reported that
the person had been sterilised.
0She occasionally fainted (see: Medical). She has had
abdominal pains for a longer period of time. She has
been examined, but no clear answers emerged. She kept
complaining about abdominal pains, leading to
adjustments in her medication and for quite a long time
she used Provera. When she kept complaining about
abdominal pains, she got some extra Naproxen.
Finally, the gynecologist decided with her parents to
operate and remove her uterus. This has been successful,
she no longer menstruates and so does not suffer from
abdominal pains.(Woman, 34 years old, moderate
ID)
Information and sexual education
A reference to sexual education or information was
found in four ISP documents (2.14%). These were
mostly statements of whether or not the person had
been educated sexually, but most of these ISP
documents (three) did not explain how this is relevant
in current support provision or how follow-up is
provided. For example,
He has had sexual education at school. He is interested
in the other sex, age accordingly.(Man, 20 years old,
level of ID unknown)
Developing and maintaining relationships
Table 3shows that we found segments of developing
and maintaining relationships in 20 ISP documents.
This could be that the person with ID has expressed
that he or she wants to have a boyfriend or girlfriend
or that the person has a boyfriend or girlfriend. Two
ISP documents reported that a legal commitment had
been made. In four ISP documents, it was not clear
whether the boyfriend or girlfriend was a regular
friend or a sexual partner. The ISP documents did
not state how people with ID are supported in their
relationship: They describe that the person is in a
relationship and how it is expressed (e.g. by holding
hands or seeing each other weekly), and only in ve
ISP documents, we found minimal information about
the support that is given.
She has been in a relationship since 2003. This is a
friendly relationship and sometimes they kiss. Her
boyfriend is often at her at, he often cleans it for her.
(Woman, 63 years old, mild ID)
The lack of a description of support is also found in
ISP documents in which the person with ID is
described to be vulnerablein social contacts or when
he or she is in a relationship but is experiencing
difculties in this area. Most ISP documents describe
this risk or problem, but do not provide an account of
how support is then being provided.
He is regarded as vulnerable and easily inuenced. He
easily feels pressured by others and has the need to prove
himself. There is a risk that he is overburdened by his
environment.(Man, 26 years old, mild ID)
when they see each other and sleep together but also
when they take time to do things for themselves. He
nds it difcult to give his girlfriend space if she - for
example - wants to go out with a friend or family
member.(Man, 36 years old, level of ID unknown)
This description of the risk or problem is also found
with respect to the wishes of individuals, with the
exception of four ISP documents, in which a support
goal was described in the area of nding a girlfriend.
Physical contact
Table 3shows that information regarding physical
contact is mostly found in ISP documents of people
with severe or profound ID. It then often relates to
how the individual responds to physical contact such
as cuddling or during physical care. The reaction to
physical contact can be interpreted as a means of
making contact with others, as this citation illustrates
Person likes to cuddle with staff(woman, 47 years old,
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Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
severe ID), but it can also be an expression of
affection and sexual feelings.
He sometimes likes to have contact with other residents.
He can laugh at what is happening around him, but he
also seeks physical contact (with his hand) with other
residents. Residents respond in different ways, depending
on the moment and the person. Some people like it, and
keep the physical contact, other people pull their hand
back.(Man, 21 years old, severe ID)He doesnt like
it when you touch him a lot, for example when getting
dressed and shaved. He lets you know by whining and
grabbing you.(Man, 47 years old, severe ID)
Parenting or the desire to be a parent
As is shown in Table 3,in27 ISP documents, we
found information related to children, mostly of
women with mild to moderate ID. In two cases
(1.07%), it was reported that the person with ID has
or had children. In one case, the ISP only reported
that there were two children and one child died. The
only information given about this child is that it lives
abroad. In the other case, the ISP reported that the
person with ID is a mother of seven children. She sees
them every 2weeks. All her children have an ID and
live with a foster family or in an institution.
Often, it is stated in more general terms that the
person is aware of his or her disability and how this
inuences his or her life.
He thinks about it sometimes, what if he didnt have this
disability. How would his life be? Would he be married
and have children?(Man, 46 years old, mild ID)
One ISP document stated explicitly that the person
with ID wants to be a parent and is frustrated that she
is not.
She likes her brothers children, but at the same time
experiences the frustrations of not being able to raise
children herself.(Woman, 36 years old, mild ID)
In one ISP document (0.53%), it was made clear
that the individual does not want to get married or have
children:
She has a boyfriend. They give each other kisses, but
there is no sexual relationship. If her boyfriend talks
about marriage or children, she says she does not want
that.(Woman, 63 years old, mild ID)
Privacy
Three ISP documents (1.60%) provided information
on privacy in relation to sexuality.
She does not talk about sexual feelings, she nds this
private. She does however talk and giggle about
cuddling and kissing with X.(Woman, 64 years old,
moderate ID)He needs guidance in order to respect the
privacy of others. It has happened that the privacy of
other group members was violated. This was caused by
his disability and/or sexual needs.(Man, 42 years old,
severe ID)
Joining an advocacy group regarding sexual rights
No segments were found regarding the wish to meet
up or join an interest or advocacy group regarding
sexual rights. In 30 ISP documents (16.04%), all from
one service provider organisation, a standard
reference was made: She/he can not stand for her/his
ownrights and interests.
Provision of professional support
As is described throughout the results, little
information about the attitude of staff and the use of
sexual education, treatment or other support
strategies was found in the ISP documents. In only
eight ISP documents (4.28%) was the attitude of staff
with regards to sexuality described. Reference to the
use of interventions or programs regarding sexuality
was not found in any of the ISP documents.
She can testnew people to see how they react. For
example, taking her shirt off in a public area. This
rarely happens now. She does say things like: I wet my
pantsor I dont feel so good(when this is not true).
Respond casually on this, change the subject or ignore it.
That is the best way to deal with it. If you stick to this
for a few weeks, this behaviour will fade away.
(Woman, 27 years old, mild ID)In working with her
you need to take into account that she has had bad
experiences with men. It is therefore inappropriate for a
male to provide support in this area. In supporting her,
you should also take her vulnerability into account.
Support staff should listen to her talking about her
relationship and the feelings she has about this. Support
staff need to help her in realising her dream of living
together with someone. It is important to keep the
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Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
relationship with her father and family a subject of
conversation.(Woman, 43 years old, mild ID)
Support goals describe the areas in which and the
way in which support is provided. A total of 475 goals
were found in the 187 ISP documents. Four of these
goals (0.84%) concerned sexuality or (intimate)
relationships, refer to, for example, this goal:
I want to build my relationship with S. I want to
explore the possibilities of getting married or living
together. I need support to stand up for myself and make
my own choices (in my relationship).(Man, 56 years
old, mild ID)
Conclusions
In this study, we examined ISP documents of people
with ID using residential support services in the
Netherlands. We were interested in the extent to
which sexual health and sexual rights were mentioned
in ISP documents, what subjects or issues regarding
sexuality were covered and how support is being
provided to people with ID regarding aspects related
to sexual health and sexual rights. To our knowledge,
no such study has been carried out before.
With respect to the extent to which sexual health
and sexual rights were found in ISP documents, we
found that 85% of the ISP documents provided
information in this area. This high number may be the
result from Dutch policy requiring that sexuality is
addressed in ISP documents (Herps et al.2016a).
Most often, information in the ISP documents
regarding sexuality-related topics were sexuality
(sexual or non-sexual behaviour, sexual abuse, sexual
preferences), sexual health and parenting/desire to be
a parent. This concerns a limited number of parts of
the overall concept of sexuality.
In ISP documents, there should be congruence
between the individuals support needs and the
support agreements and goals that are set (Thompson
et al.2009). The third research question concerned
how support is being provided on sexual health and
sexual rights. The results of the present study show
that there is a large discrepancy between the amount
of information that describes aspects of sexuality of
individuals with ID and the amount of support
strategies, agreements or goals in this area. We found
little references to counselling or indications for
support provision in instances of negative sexual
experience or abuse (Abbott & Howarth 2005;
Hollomotz 2008). Furthermore, little reference was
made to the use of sex education programs or other
interventions related to sexuality and relationships
(Löfgren-Mårtenson 2012; Schaafsma et al.2013,
2015).
There are several possible explanations for the
lack of support goals or strategies regarding sexuality
being found in the ISP documents. First, it is
possible that the individual with ID or their relatives
do not want this to be written in the ISP document.
Herps et al.(2013) reported that people with ID
prefer negative life experiences not to be included in
the ISP document. However, this does not fully
explain the high number of ISP documents that did
describe aspects related to sexuality but did not
include an account of support in this area. Another
possibility is that more information can be found in
individual treatment plans or medical les, for
example, when sexual abuse has led to trauma, or
with regards to the motivation for using
contraceptives or performing sterilisation. Although
we did not nd reference to such les, this does not
mean that they do not exist. Third, previous
research has shown that support staff can feel
inhibited in talking about this subject (Abbott &
Howarth 2007; Richards et al.2009) and that family
members and other support providers set different
norms for themselves (or other people without
disabilities) than for people with ID (Christian et al.
2002; Yool et al.2003; Swango-Wilson 2008). The
results of our study show that sexuality is being
talked about, but it may well be that staff feels
inhibited in making agreements about supporting
the individual in this area or that differences in
opinions and attitudes is reected in the absence of
specic support agreements (Christian et al.2002;
Yool et al.2003; Swango-Wilson 2008; Schaafsma
et al.2013,2014,2015). A lack of support
agreements in the area of sexuality may result in
people with ID not being able to exercise their
sexual rights, to satisfy their needs or for them to
feel less able to talk about it.
It is important to note, when interpreting the results
of this study, that a lack of information regarding
sexuality in the ISP documents does not necessarily
reect a lack of support with respect to sexuality in
daily practice. Paper plans do not necessarily reect
the individuals life in the fullest, and previous studies
8
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©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
indicate that developing ISP documents can be a
rather bureaucratic exercise, which is done simply
because it is required (Mansell & Beadle-Brown
2004; Osgood 2005; Herps et al.2016b).
Implications for providing professional support
The results of our study have at least three
important implications for providing professional
support to people with ID in relation to sexuality.
First, sexuality, sexual health and sexual rights are
important subjects to talk about with people with
ID. It should be part of the support needs
assessment that addresses the individuals needs and
wishes (Thompson et al.2009; Schaafsma et al.
2017). Second, talking about sexuality, specically
with people with ID, is not easy for many people
(Abbott & Howarth 2007; Richards et al.2009;
Schaafsma et al.2017; Stoffelen et al.2013). Not
only the individual support staff should be provided
with support to talk about sexuality and other
sensitive topics with people with ID, their relatives
and their colleagues. The whole system
(government, schools, agencies, advocacy groups,
families) should be set up to create respect and
recognition of rights for the sexuality of people with
an ID (Richards et al.2009). Third, sexuality is a
subject that needs more attention. Individuals with
ID, their relatives and staff need to be given
guidance on how to address this subject in a
respectful manner: by talking about it in a way that
takes into account the vulnerability and sensitivity of
the individuals involved, by increasing knowledge
about the topic and by increasing the support
available in this area. Furthermore, the wishes of
people with ID should determine the strategy
of support. The search for the cause and meaning of
behaviour must be leading for professional support
providers. And assuming that every human being is
a sexual being, professional support providers need
to be more sensitive about behaviour, whether or
not it is sexual. An open mind is required instead of
acting from their own standards and values.
Finally, we endorse the view of Richards et al.
(2009). They advocate a holistic approach in which all
systems and supports work cohesively, simultaneously,
seamlessly, and in harmony to ensure that persons with
developmental disability achieve equality in sexual rights
(Richards et al.2009,p.210).
Strengths and limitations of the present study
When interpreting the results, the following strengths
and limitations should be considered. A relative
strength of the present study is the number of ISP
documents we analysed and the fact that these were
sourced from different service provider organisations.
In the Netherlands, every service provider
organisation develops and implements their own ISP
procedures and forms. When the protocol of the
ISP document does not mention the topic sexuality,
the chances are that it gets forgotten or ignored. By
including different organisations in this study, we in-
corporated different kinds of forms, and, in doing so,
reduced the chance of potential biases inuencing
the data.
There are also several limitations in this study. First
we used only one source in this study: ISP
documents. The results raise different questions
which could have been answered if other sources were
used, e.g. interviews with people with ID, their family
and staff. The use of other sources such as medical
documents can also provide more information. This
would be interesting for further research.
This is the rst article that looked into how
sexuality is described in ISP documents. The study
was exploratory and as such did not focus on nding
differences between groups within this set of data.
However, further research could be done to explore
the results in more depth by examining differences in
gender, age and level of ID.
As described in the previous texts, future research
that involves multiple sources and analysis of
differences between groups could be done to get a
better understanding of sexuality in ISP documents.
Furthermore, international comparison is
recommended. It contributes to a better
understanding of sexuality of people with ID and their
quality of life, to compare how sexual health and
sexual rights are addressed in ISP in other countries.
And nally, it would be interesting to investigate the
whole system of government, schools, agencies,
advocacy groups, families and their vision, role and
opportunities on sexuality of people with an ID.
Recommendations
The ISP document should be a document that can be
used as a practical guide to put into practice the
wishes and preferences of individuals with ID, also in
9
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©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
relation to sexual health. It is important to talk to
people with ID and taking their views seriously to nd
out what place and value sexuality has in their lives,
what specic support they need and wish for and to
practice the concept of shared decision-making. As
such, we recommend the use of clear language and
the setting out of realistic and achievable goals,
alongside a description of the type of support needed
and how this should be achieved. Because the ISP is
person-centred, the person with ID and people
important to him or her should be involved in
decision-making. The whole ISP document should
reect that serious consideration has been given to
sexuality including different aspects of sexual rights,
the need for proactive sex education and how goals
related to this can be implemented.
References
AAIDD (2008). Sexuality. Joint Position Statement of
AAIDD and The Arc. Retrieved May 20,2016,fromhttps://
aaidd.org/news-policy/policy/position-statements/sexuality
Abbott D. (2013) Nudge, nudge, wink, wink: love, sex and
gay men with intellectual disabilities a helping hand or
a human right? Journal of Intellectual Disability Research
57,107987. https://doi.org/10.1111/j.1365-
2788.2012.01642.x.
Abbott D. & Howarth J. (2005)Secret loves, hidden lives?
Exploring issues for people with learning difculties who are
gay, lesbian or bisexual. The Policy Press, Bristol.
Abbott D. & Howarth J. (2007) Still off-limits? Staff views on
supporting gay, lesbian and bisexual people with
intellectual disabilities to develop sexual and intimate
relationships?. Journal of Applied Research in Intellectual
Disabilities. https://doi.org/10.1111/j.1468-
3148.2006.00312.x
Bartholomew Eldredge L. K., Markham C. M., Ruiter R. A.
C., Fernandez M. E., Kok G. & Parcel G. S. (2016)
Planning health promotion programs: an intervention mapping
approach,4th edn. Jossey-Bass, San Francisco.
Bernert D. (2011) Sexuality and disability in the lives of
women with intellectual disabilities. Sexuality and
Disability 29,12941.
Christian L., Stinson J. & Dotson L. A. (2002)Staffvalues
regardingthe sexual expression of women with development
disabilities. Sexuality and Disability 19,28392. https://doi.
org/10.1023/A:1017957409670.
Eastgate G., Van Driel M. L., Lennox N. & Scheermeyer E.
(2011) Women with intellectual disabilities. A study of
sexuality, sexual abuse and protection skills. Australian
Family Physician 40,2269.
Frawley P. & Bigby C. (2014)Im in their shoes:
experiences of peer educators in sexuality and relationship
education. Journal of Intellectual and Developmental
Disability 39,16776. https://doi.org/10.3109/
13668250.2014.890701.
Hayashi M., Arakida M. & Ohashi K. (2011) The
effectiveness of a sex education program facilitating social
skills for people with intellectual disability in Japan. Jour-
nal of Intellectual and Developmental Disability 36,1119.
https://doi.org/10.3109/13668250.2010.549463.
Healy E., McGuire B. E., Evans D. S. & Carley S. N. (2009)
Sexuality and personal relationships for people with an
intellectual disability. Part I: Service-user perspectives.
Journal of Intellectual Disability Research 53,90512. https://
doi.org/10.1111/j.1365-2788.2009.01203.x.
Herps M. A., Buntinx W. H. E. & Curfs L. M. G. (2013)
Individual support planning: perceptions and expectations
of people with intellectual disabilities in The Netherlands.
Journal of Intellectual Disability Research 57,102736.
https://doi.org/10.1111/j.1365-2788.2012.01598.x.
Herps M. A., Buntinx W. H. E. & Curfs L. M. G. (2016a)
Individual support planning with people with ID in The
Netherlands: ofcial requirements and stakeholders
expectations. ALTER - European Journal of Disability
Research/Revue Européenne de Recherche sur le Handicap 10,
2818. https://doi.org/10.1016/j.alter.2016.05.002.
Herps M. A., BuntinxW. H. E., Schalock R.L., van Breukelen
G. J. P. & Curfs L. M. G. (2016b) Individual support plans
of people with intellectual disabilities in residential services:
content analysis of goals and resources in relation to client
characteristics. Journal of Intellectual Disability Research 60,
25462. https://doi.org/10.1111/jir.12245.
Hickson L., Khemka I., Golden H. & Chatzistyli A. (2008)
Proles of women who have mental retardation with and
without a documented history of abuse. American Journal
on Mental Retardation 113,13342. https://doi.org/10.1352/
0895-8017(2008)113%5B133:POWWHM%5D2.0.CO;2.
Hollomotz A. (2008)Maywepleasehavesextonight?- people
with learning difculties pursuing privacy in residential
group settings. British Journal of Learning Disabilities 37,917.
https://doi.org/10.1111/j.1468-3156.2008.00512.x.
Hollomotz A. (2011)Learning difculties and sexual vulnerability.
A social approach. Jessica Kingsley Publishers, London.
Ignagni E., Schormans A., Liddiard K. & Runswick-Cole K.
(2016)Some people are not allowed to love: intimate
citizenship in the lives of people labelled with intellectual
disabilities. Disability and Society 31,1315. https://doi.org/
10.1080/09687599.2015.1136148.
International Planned Parenthood Federation (2003). IPPF
charter on sexual and reproductive rights. London. ISBN
086089 109 7. https://www.sm.ee/sites/default/les/con-
tent-editors/eesmargid_ja_tegevused/Tervis/Tervislik_
eluviis/ippf_charter_srh_rights_2003.pdf
Kelly G., Crowley H. & Hamilton C. (2009) Rights, sexuality
and relationships in Ireland: itdbenicetobekindof
10
Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
trusted. British Journal of Learning Disabilities 37,30815.
https://doi.org/10.1111/j.1468-3156.2009.00587.x.
Leutar Z. & MihokovićM. (2007) Level of knowledge about
sexuality of people with mental disabilities. Sexuality and
Disability 25,93109. https://doi.org/10.1007/s11195-007-
9046-8.
Löfgren-Mårtenson L. (2012)I Want to Do it Right!A
pilot study of Swedish sex education and young people
with intellectual disabilities. Sexuality and Disability 30,
20925. https://doi.org/10.1007/s11195-011-9239-z.
Mansell J. & Beadle-Brown J. (2004) Person-centred
planning or person-centred action? Policy and practice in
intellectual disability services. Journal of Applied Research in
Intellectual Disabilities 17,19.
McCarthy M. (2009)I have the jab so I cant be blamed for
getting pregnant: Contraception and women with
learning disabilities. Womens Studies International Forum
32,198208. https://doi.org/10.1016/j.wsif.2009.05.003.
McGuire B. E. & Bayley A. A. (2011) Relationships,
sexuality and decision-making capacity in people with an
intellectual disability. Current Opinion in Psychiatry 24,
398402. https://doi.org/10.1097/
YCO.0b013e328349bbcb.
Murphy G. H., OCallaghan A. C. & Clare I. C. H. (2007)
The impact of alleged abuse on behaviour in adults with
severe intellectual disabilities. Journal of Intellectual
Disability Research 51,7419. https://doi.org/10.1111/
j.1365-2788.2007.00973.x.
Nussbaum M. C. (2014)Mogelijkheden scheppen. Een nieuwe
benadering van de menselijke ontwikkeling. [Creating
Capabilities. The Human Development Approach]. Ambo/
Anthos uitgevers, Amsterdam.
OCallaghan A. C. & Murphy G. H. (2007) Sexual
relationships in adults with intellectual disabilities:
understanding the law. Journal of Intellectual Disability
Research 51,197206. https://doi.org/10.1111/j.1365-
2788.2006.00857.x.
Osgood T. (2005) Managing the tensions between the
interests of organisations and service users. In: Person
centred planning and care management with people with
learning disabilities (eds P. Cambridge & S. Carnaby),
pp. 5164. Jessica Kingsley Publishers, London.
Reiter S., Bryen D. N. & Shachar I. (2007) Adolescents with
intellectual disabilities as victims of abuse. Journal of
Intellectual Disabilities 11,37187. https://doi.org/10.1177/
1744629507084602.
Richards D., Miodrag N., Watson S. L., Feldman M.,
Aunos M., Cox-Lindenbaum D. et al.(2009) Sexuality
and human rights of persons with intellectual disabilities.
In: Challenges to the Human Rights of People with
Intellectual Disabilities (eds F. Owen & D. Grifths),
pp. 184219. Jessica Kingsley Publishers, London and
Philadelphia.
Robertson J., Emerson E., Hatton C., Elliott J., Mcintosh B.,
Swift P. et al.(2007) Person-centred planning : factors
associated with successful outcomes for people with
intellectual disabilities. Journal of Intellectual Disability
Research 51,23243. https://doi.org/10.1111/j.1365-
2788.2006.00864.x.
Schaafsma D., Kok G., Stoffelen J. M. T. & Curfs L. M. G.
(2013) People with intellectual disabilities about sexuality:
important implications for the development of sex
education. Journal of Applied Research in Intellectual
Disabilities 26,15766. https://doi.org/10.1111/jar.12017.
Schaafsma D., Kok G., Stoffelen J. M. T., van Doorn P. &
Curfs L. M. G. (2014) Identifying the important factors
associated with teaching sex education to people with
intellectual disability: a cross-sectional survey among paid
care staff. Journal of Intellectual and Developmental Disability
39,15766. https://doi.org/10.3109/
13668250.2014.899566.
Schaafsma D., Kok G., Stoffelen J. M. T. & Curfs L. M. G.
(2015) Identifying effective methods for teaching sex
education to individuals with intellectual disabilities: a
systematic review. Journal of Sex Research 52,41232.
https://doi.org/10.1080/00224499.2014.919373.
Schaafsma D., Kok G., Stoffelen J. M. T. & Curfs L. M. G.
(2017) People with intellectual disabilities talk about
sexuality: implications for the development of sex
education. Sexuality and Disability 35,2138. https://doi.
org/10.1007/s11195-016-9466-4.
Schalock R. L., Keith K. D., Verdugo M. A. & Gomez L. E.
(2010) Quality of life model development and use in the
eld of intellectual disability. In: Quality of life: Theory and
implementation (ed. R. Kober), pp. 1732. New York, Sage.
Schwartz A. A., Jacobson J. W., & Holburn S. C. (2000)
Dening person centeredness: results of two consensus
methods. Education and Training in Mental Retardation and
Developmental Disabilities 35,23549.
Stainton T. & Clare I. C. H. (2012) Human rights and
intellectual disabilities: an emergent theoretical paradigm?
Journal of Intellectual Disability Research 56,10113. https://
doi.org/10.1111/Jir.12001.
Stancliffe R. J., Hayden M. F. & Lakin K. C. (1999)
Effectiveness and quality of individual planning in
residential settings: an analysis of outcomes. Mental
Retardation 37,10416. https://doi.org/10.1352/0047-
6765(1999)037%3C0104:EAQOIP%3E2.0.CO;2.
Stoffelen J., Kok G., Hospers H. & Curfs L. M. G. (2013)
Homosexuality among people with a mild intellectual
disability: an explorative study on the lived experiences of
homosexual people in the Netherlands with a mild intellec-
tual disability. Journal of Intellectual Disability Research 57,
25767. https://doi.org/10.1111/j.1365-2788.2011.01532.x.
Swango-Wilson A. (2008) Caregiver perception of sexual
behaviours of individuals with intellectual disabilities.
Sexuality and Disability 26,7581. https://doi.org/10.1007/
s11195-008-9071-2.
Thompson J. R., Bradley V. J., Buntinx W. H. E.,
Schalock R. L., Shogren K. A., Snell M. E. et al.(2009)
11
Journal of Intellectual Disability Research
J. Stoffelen et al.A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
Conceptualizing supports and the support needs of
people with intellectual disability. Intellectual and
Developmental Disabilities 47,13546 https://doi.org/
10.1352/1934-9556-47.2.135.
Tuffrey-Wijne I., Bernal J., Butler G., Hollins S. & Curfs
L. M. G. (2007) Using nominal group technique to
investigate the views of people with intellectual
disabilities on end-of-life care provision. Journal of
Advanced Nursing 58,809. https://doi.org/10.1111/j.1365-
2648.2007.04227.x.
UNCRPD (2006) Convention on the rights of persons with
disabilities. New York. http://www.un.org/disabilities/
convention/conventionfull.shtml
Van Berlo W., De Haas S., Van Oosten N., Van Dijk L.,
Brants S., Tonnon S. et al.(2011)Beperkt weerbaar. Een
onderzoek naar seksueel geweld bij mensen met een
lichamelijke, zintuiglijke of verstandelijke beperking [Sexual
violence among individuals with a physical, sensory, or
intellectual disability]. Rutgers WPF, Utrecht.
Wagemans A., van Schrojenstein Lantman-de-Valk H.,
Tuffrey-Wijne I., Widdershoven G. & Curfs L. (2010)
End-of-life decisions: an important theme in the care for
people with intellectual disabilities. Journal of Intellectual
Disability Research 54,51624. https://doi.org/10.1111/
j.1365-2788.2010.01276.x.
Watson S. L., Venema T., Molloy W. & Reich M. (2002)
Sexual rights and individuals who have a developmental
disability. In: Ethical dilemmas: sexuality and developmental
disability (eds D. M. Grifts, D. Richards, P. Fedoroff &
S. L. Watson), pp. 1953. NADD Press, New York.
Williams V. & Robinson C. (2000)Tick this, Tick that:
the views of people with learning disabilities on their
assessments. Journal of Intellectual Disabilities 4,293305.
https://doi.org/10.1177/146900470000400403.
World Association for Sexual Health (2014). Declaration of
sexual rights.http://www.worldsexology.org/wp-content/
uploads/2013/08/declaration_of_sexual_rights_sep03_
2014.pdf
World Health Organization (2015)Sexual health, human
rights and the law. WHO, Geneva http://apps.who.int/iris/
handle/10665/175556.
Yool L., Langdon P. E. & Garner K. (2003) The
attitudes of medium-secure unit staff toward the
sexuality of adults with learning disabilities. Sexuality
and Disability 21,13751. https://doi.org/10.1023/
A:1025499417787.
Accepted 14 September 2017
12
Appendix A: Search terms based on three denitions of sexual rights (Table 1)
Common subjects in the
three documents on sexual rights (Table 1)
Search terms
related to
Search
terms
The right to life Safety seks, sex
The right to equality, be free of discrimination Sexual freedom, homosexuality,
sexual diversity
seks, sex
The right to sexual health care Sexual health, treatment,
contraceptives
voorbehoed, pil, condoom,
sterilisatie, spiraal
(contraceptive, contraceptive
pill, condom, sterilisation,
contraceptive coil)
The right to information and education Sexual information,
eduction, training
voorlichting, educatie
(information, education)
The right to bodily integrity Touching, stroking,
setting boundaries
lichaam, aanraken
(body, contact)
The right to choose their partner, to
choose whether or not to marry (based on
equality and consensual)
Partner, boyfriend/girlfriend,
dating, relationship, marriage, friend
vriend, partner, man, vrouw,
verkering, relatie, trouwen
(friend, partner, man, woman,
engagement, relation, marriage)
The right to privacy Privacy priv
The right to be sexually active or not Sexually active seks, sex
The right to decide whether or not, and when,
to have children
Children kind (child)
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13
(Continued)
Common subjects in the
three documents on sexual rights (Table 1)
Search terms
related to
Search
terms
The right to pursue a satisfying, safe and
pleasurable sexual life
Sexual satised, safe sex
and sexual pleasure
seks, sex
The right to the freedom of thoughts, opinions
and expression
Sexual fantasies, sexual
desires, sexual expression
seks, sex
The right to enjoy the benets of scientic
progress and its application
Sexual research seks, sex
The right to be free from torture, violence
and coercion
Sexual abuse, sexual
violence, sexual coercion
seks, sex
The right to freedom of assembly and political
participation
Advocacy group belangen (interests)
The right or access to justice, remedies en
redress
Sexual abuse, declaration seks, sex
*The terms that were used were the Dutch words and synonyms.
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Scientic Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
... A saúde sexual e reprodutiva está inserida nas vidas das pessoas, as mulheres com transtornos/deficiência têm os mesmos direitos a saúde sexual e reprodutiva quanto qualquer outra mulher, contudo esses direitos não são respeitados na prática clínica Larsson, 2018;Stoffelen et al., 2017;Alexander;Gomez, 2017;Ngwena, 2017;Wickström;Höglund, 2020;Kong, 2019;Detomini;Rasera, 2018;Vijayalakshmi;Reddemma;Math, 2012;Kahonde;Mckenzie;Wilson, 2018). ...
... Autores dessa revisão apontam a visão de profissionais e familiares quanto a necessidade de suprimir o desejo de seus filhos com deficiência ou transtornos mentais Larsson, 2018;Stoffelen et al., 2017;Alexander;Gomez, 2017;Wickström;Höglund, 2020;Kong, 2019;Detomini;Rasera, 2018;Vijayalakshmi;Reddemma;Math, 2012;Kahonde;Mckenzie;Wilson, 2018). Contudo a "normalização" da pessoa com deficiência (transtornos mentais), estigmatizou ações corriqueiras em suas vidas, onde atividades comuns são trabalhadas como "atividades da vida diária", ou o simples fato de saírem passou a ser "acesso à comunidade" e "interação social", linguagem que se tornou jargões discriminatórios de sua humanidade, reprimindo seus desejos e direitos (Alexander; ...
... Essa normatização as expõe a opressão por normas patriarcais em torno dos papéis femininos, incapazes de não apenas escolher seus parceiros sexuais e de como se expressar sexual e reprodutivamente, como também rejeitar a interferências de terceiros em suas escolhas, se prendendo a um triplo vinculo (Kong, 2019). Estudo desenvolvido na Holanda, corrobora com esses achados pontuando que a política de saúde determina a obrigatoriedade de questionar as pacientes sobre sua saúde sexual e realizar ações educativas para promover a sexualidade de pessoas vulneráveis acompanhadas pelo Estado, e que essas informações devem estar inseridas em seus prontuários, buscando de forma legal a imposição aos profissionais trabalharem a temática (Stoffelen et al., 2017). ...
Article
Historically, women's health and mental health have achieved important advances in legal issues, but their sexual and reproductive health remain stigmatized and require qualified attention in order to exercise the rights acquired as a form of citizenship. This study aims to analyze the sexual and reproductive health rights of women with mental disorders, with the purpose of elucidating and providing support to determine the quality of the actions developed in the field of mental health. For this purpose, an integrative literature review was conducted in five health databases for analysis of scientific articles. A total of 1,243 references were found, and after applying the inclusion and exclusion criteria, 10 articles were selected to compose this review. It was concluded that although there are several national and international laws, the right to experience sexuality and sexual health by women with mental disorders is still neglected, whether due to stigma, discrimination or lack of knowledge of the subject by patients, family members and health professionals. There is a need for concrete actions in mental health clinics so that these women can enjoy the full exercise of their rights.
... 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 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;). ...
... 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). ...
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Introduction: The person with intellectual disability is in a vulnerable situation, namely with regard to affections and sexuality. Generally, these people have precarious knowledge about sexuality, and their sexual education is insufficient or inadequate to their characteristics and needs, and it is essential for nurses to intervene in the field of sexual education with this population. The implementation of health literacy programmes aimed at people with intellectual disability, within the scope of sexuality, using inclusive strategies, can contribute to the development of healthy and safe relationships. Objetive: To assess the effects of a sex education programme on a sample of people with intellectual disabilities. Methods: Action-research developed in four cycles, between 2011 and 2015, in an institution to support people with intellectual disabilities. Results: In the first cycle, sex education was identified as a priority, and in the last one a sex education programme was implemented and its effects evaluated with the SexKen-ID scale, with improvements in the participants' knowledge being noted. Conclusion: The results of this study revealed the importance of sex education for people with intellectual disabilities and a better knowledge attainment over all the topics, when using homogeneous groups, adapted discourse and interactive strategies such as gamification. The promotion of a dynamic and reflective environment, promoted learning and experiences sharing.
... Uma limitação importante presente nos estudos foi a escassez de publicações acerca da temática, sendo o conhecimento ainda muito limitado, assim como, identificar a falha na educação sexual para pessoas deficientes e com transtornos mentais Larsson, 2018;Stoffelen;Herps;Buntix Et Al, 2017;Alexander;Gomez, 2017;Wickström;Höglund, 2020;Detomini;Rasera, 2018;Vijayalakshmi;Reddemma;Math, 2012;Barbosa;Giami;Freitas, 2015). ...
Conference Paper
Historically, women's health and mental health have achieved important advances in legal issues, but their sexual and reproductive health remain stigmatized and require qualified attention in order to exercise the rights acquired as a form of citizenship. This study aims to analyze the sexual and reproductive health rights of women with mental disorders, with the purpose of elucidating and providing support to determine the quality of the actions developed in the field of mental health. For this purpose, an integrative literature review was conducted in five health databases for analysis of scientific articles. A total of 1,243 references were found, and after applying the inclusion and exclusion criteria, 10 articles were selected to compose this review. It was concluded that although there are several national and international laws, the right to experience sexuality and sexual health by women with mental disorders is still neglected, whether due to stigma, discrimination or lack of knowledge of the subject by patients, family members and health professionals. There is a need for concrete actions in mental health clinics so that these women can enjoy the full exercise of their rights.
... For people with mild intellectual disabilities, sexual health encompasses their needs in relationships, sexual experiences, and sexual selfhood (De Wit et al., 2023). Living and working in specialised institutions or with relatives (Kahonde et al., 2020;Top, 2022), people with mild intellectual disabilities have fewer opportunities to meet their sexual needs than people without disabilities do (Carter et al., 2021;Jahoda & Pownall, 2014;Stoffelen et al., 2017). ...
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Background: Sexual health includes physical, emotional, mental, and social wellbeing related to sexuality. Given people with mild intellectual disabilities' reliance on relatives and support staff, it is important to explore the latter's understanding of sexual health. Method: Relatives (n = 7) and support staff (n = 15) of people with mild intellectual disabilities participated in a concept mapping procedure that included brainstorming, sorting and ranking activities. An expert group interpreted the results. Results: Relatives and support staff identified aspects of sexual health of people with mild intellectual disabilities, including sexual preferences, sexual behaviour and support and education. While relatives prioritised relationships, support staff emphasised sexual identity. Conclusions: The study highlights the necessity of adopting a comprehensive approach to sexual health for people with mild intellectual disabilities. This approach should consider developmental perspectives, incorporating support, education and a positive attitude towards their sexual health. Implications for research and practice are discussed.
... The sexuality of adults with intellectual disabilities (ID) is surrounded by myths and stigma (Pebdani and Tashjian 2022), which directly interfere with their experience of sexuality. The perceptions of others are one of the main barriers to the sexuality of adults with ID (Sinclair et al. 2015), and these attitudes may be key to explaining why sexuality issues are not adequately reflected in individual support plans (Stoffelen et al. 2017). Adults with ID themselves report how influential the attitudes of staff carers and family members are on their experience of sexuality, which sometimes needs to be experienced with secrecy and deception ). ...
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Background: The attitudes of others towards the sexuality of people with intellectual disabilities are one of the main perceived barriers to them expressing their sexuality. Research on what influences these attitudes yields heterogeneous results. Method: A systematic review of the literature and a meta-analysis were carried out. Results: Eleven studies using the Attitudes to Sexuality Questionnaire-Individuals with an Intellectual Disability (ASQ-ID) were included. Within the included studies, the country's socio-economic development and level of individualism were associated with attitudes towards the sexual rights, parenting and self-control of adults with intellectual disabilities. General population and staff samples held more favourable attitudes than family samples in terms of sexual rights and parenting. Age and gender did not yield significant results. Conclusions: Variables related to country context may underlie the differences observed between countries and therefore influence the population's general thinking and ideologies. Unexpectedly, no age differences were observed. Gender-related results may reflect rapprochement between genders in sexuality. These findings are relevant for researchers and practitioners, as they suggest the importance of considering contextual factors when developing effective interventions that aim to support adults with disabilities to live their sexuality.
... Além disso, a vivência da sexualidade entre os idosos é considerada uma necessidade humana básica (10) , significativa para a manutenção da saúde (10) , bem-estar (11) e qualidade de vida (QV) (12)(13)(14) . A QV é um constituinte subjetivo e multidimensional, considerado, atualmente, como um importante marcador de saúde (15)(16) . ...
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Objectives to analyze sexual function and its correlation with sexuality and quality of life in male older adults. Methods a cross-sectional study, developed with 231 male older adults. Participants completed four instruments to obtain biosociodemographic data, sexual function, sexuality and quality of life. Analyzes were performed using the Mann-Whitney test and Spearman Correlation. Results sexual function was positively correlated with sexuality in a moderate magnitude and with quality of life in a low magnitude. Male older adults without sexual dysfunction experienced their sexuality better and had a better quality of life. Finally, partner overall satisfaction was the facet of sexual function that had the highest positive correlation with sexuality, while self-confidence had the highest positive correlation with quality of life. Conclusions we suggest that sexual function should be addressed more frequently in Primary Health Care services, as we found statistically significant correlations with sexuality and quality of life components. Descriptors: Public Health; Health of the Elderly; Men’s Health; Sexual Health; Geriatric Nursing.
... It should be remembered that the stoning of sexuality is influenced by emotional, sociocultural, biological and physiological factors (5) . In addition to this, the experience of sexuality among older adults is considered a basic human need (10) , significant for health (10) , wellbeing (11) and quality of life (QoL) maintenance (12)(13)(14) . QoL is a subjective and multidimensional constituent, currently considered an important health marker (15)(16) . ...
Article
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Objectives: to analyze sexual function and its correlation with sexuality and quality of life in male older adults. Methods: a cross-sectional study, developed with 231 male older adults. Participants completed four instruments to obtain biosociodemographic data, sexual function, sexuality and quality of life. Analyzes were performed using the Mann-Whitney test and Spearman Correlation. Results: sexual function was positively correlated with sexuality in a moderate magnitude and with quality of life in a low magnitude. Male older adults without sexual dysfunction experienced their sexuality better and had a better quality of life. Finally, partner overall satisfaction was the facet of sexual function that had the highest positive correlation with sexuality, while self-confidence had the highest positive correlation with quality of life. Conclusions: we suggest that sexual function should be addressed more frequently in Primary Health Care services, as we found statistically significant correlations with sexuality and quality of life components.
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Background Despite the considerable number of young adults with developmental disabilities experiencing sexual desire and exhibiting sexual behaviours as part of their natural biological growth and development, there is a lack of research on effective intervention. This study aimed to explore the views and experiences of professionals on the sexual behaviours of individuals with developmental disabilities. Methods Semi-structured interviews with eight professionals specialising in developmental disabilities and/or inappropriate sexual behaviours were conducted, and their responses were analysed using a qualitative method. Results Professionals’ experiences were categorised into three based on the groups involved in intervention: people with developmental disabilities (desire, factors leading to lack of desire fulfilment), their family/parents (emotions and cognition/behaviours toward their child’s disability and sexuality), and professionals (current intervention method, lack of human/material resources). Conclusion Based on these findings, we suggest future directions for interventions to address sexual behaviours among individuals with developmental disabilities.
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In de periode 2019-2022 deden onderzoekers van Fontys Hogeschool Pedagogiek onderzoek naar situaties in de beroepspraktijk waarin professionals handelingsverlegenheid ervaren. Uit de verschillende onderzoeken komt een gedeelde zorg naar voren over de huidige dominante werkwijzen in onderwijs en zorg. De bijdragen van verschillende onderzoekers in deze bundel benaderen het thema macht en handelingsverlegenheid vanuit verschillende invalshoeken.
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Introducción: vivir la sexualidad y afectividad de forma plena es fundamental en todo ser humano; sin embargo, las personas con síndrome de Down (SD) tienen escasas instancias de educación sexual y pocos espacios de socialización para experimentarla. Objetivos: describir el conocimiento que tienen jóvenes con SD sobre temáticas básicas de pubertad, relaciones de pareja y reproducción. Metodología: estudio cualitativo, descriptivo, exploratorio, en dos grupos focales de jóvenes con SD, entre 13 y 18 años, separados por género. La información fue grabada, transcrita y codificada según categorías emergentes. Resultados: sobre la palabra “sexualidad”, las mujeres declararon no haberla escuchado y los hombres hicieron referencia a “sexo”, “relaciones de pareja”, “amor” y “familia”. Para “cambios puberales”, ambos grupos señalaron los cambios más visibles, pero nada respecto a reproducción. Solo un participante entendía el concepto de “relación sexual”. Las mujeres consideraron el “inicio de la vida humana” como un evento de generación espontánea y los hombres plantearon una teoría fantasiosa. La familia fue la principal fuente de información. Discusión: los participantes mostraron un manejo deficiente e infantilizado de la información. Son urgentes la investigación y el desarrollo de programas de Educación Sexual y así dignificar la sexualidad y afectividad de personas con SD, desde un enfoque de derechos.
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Existing sex education programmes have failed in involving people with intellectual disabilities in the development of these programmes. Not involving the target population decreases the likelihood that the sex education programme will be effective. This study was conducted to assess the perspectives of people with intellectual disabilities on several sexuality-related topics. Semi-structured interviews were held with 20 people with intellectual disabilities covering topics such as: sex education, relationships, sex, social media, parenthood and support. The reported frequency of sex education the participants receive is low. Their knowledge regarding sex education is mainly limited to topics such as safe sex, contraception and STI’s and tends to be superficial. Additionally, knowledge on safe sex does not always translate to safe sex behaviour. Finally, relationships are important for most participants; mainly because they don’t want to be alone. Findings from both this study and literature shows that there seems to be a need for high quality sex education. Topics to consider to include are: online relationships, social media and parenthood. It would also be beneficial to focus on sexuality-related skills. Finally, to increase the effectiveness of a sex education programme, it is advisable that a theory-and evidence-based framework, such as Intervention Mapping, is used for its development.
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Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption.
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Sex education for individuals with intellectual disabilities is important. However, our knowledge about effective methods for teaching sex education to this population is limited. We report the results of a systematic review identifying methods for sex education programs aimed at individuals with intellectual disabilities. In all, 20 articles were included that met the criteria set in terms of topic-the effectiveness of sex education programs-and population of interest-individuals with intellectual disabilities. In these articles, methods for increasing knowledge and for improving skills and attitudes were reported. However, the studies revealed that generalization of skills to real-life situations was often not achieved. There are indications that the maintenance of knowledge and skills still needs extra attention. Moreover, detailed descriptions of the program materials, program goals, and methods used in the programs were often lacking in the reports. Although there is some evidence for methods that may improve knowledge, attitudes, and skills with regard to sex education aimed at individuals with intellectual disabilities, due to the lack of detailed descriptions provided it is unclear under which conditions these methods work. We therefore suggest that authors provide additional detail about methods in future publications or in online supplements.
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Background Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual disability teach sex education or not. An online questionnaire was therefore constructed to assess the important factors associated with teaching sex education. Results Of the 163 staff members who completed the questionnaire, 39% provided sex education. Results show that it was mainly provided reactively. The main factor was the perceived social norm towards teaching sex education. Conclusions If we want paid care staff to teach sex education reactively, then we need to focus on changing the perceived social norm. However, if we want them to teach sex education proactively, a new needs assessment should be conducted in order to identify the important factors to motivate and enable them to provide sex education.
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Introduction Individualized support planning (ISP) has become a key aspect of supports for people with ID and is mandated in several countries. Different stakeholders develop policies and expectations regarding ISP. In this study, we report on requirements as found in Dutch official ID policy and on the results of consultations of panels of stakeholders and experts working in the field of ID. It was intended to describe, summarize and discuss these requirements for the purpose of enhancing ISP practices. Method A combination of desk research of policy documents and consultation of two expert panels was performed. Results A variety of criteria on content, procedures, quality and person-centeredness of ISP is being used by different stakeholders. These criteria were described and summarized. Discussion The broad range of inconsistent requirements and sometimes conflicting expectations from different stakeholders hamper a clear conceptualization of ISP and affect the use of ISP in practice.
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Community care assessments and individual service reviews are intended to empower people with learning disabilities. The research study reported in this paper investigated the effects of the Carers Act on families that include people with a learning disability, and sought the views of 51 carers and the people they cared for. This paper focuses on the views of the people with learning disabilities themselves, who reported that their assessments were often hard to understand, disempowering and inaccessible. In addition, less than half of the services discussed at the assessment were provided one year later. However, carrying out a separate assessment of the carer's needs was generally empowering, both to the carer and to the cared-for person. The paper concludes with some recommendations to improve practice in this area.
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Background Goals and objectives as mentioned in Individual Support Plans (ISPs) were analysed to explore what domains of quality of life they are associated with, what support resources are referenced for achieving the goals, and how domains and resources are related to clients age, gender and intellectual disability (ID) level. Method A total of 209 ISPs for persons with ID from eight residential Dutch service provider organisations were analysed. Mixed linear regression analyses were conducted to examine the relations between client characteristics and the content of goals and support resources. Results Results showed that ISPs of people with mild and moderate ID had significantly more goals related to independence and social participation as compared to the ISPs of people with severe and profound ID. ISPs of clients with profound ID addressed quality of life factors related to ‘well‐being’ more than ISPs of all other clients. ISPs of people aged 20–34 years had significantly more goals on independence than the two other age groups. ISPs of people under the age of 50 had significantly fewer goals with respect to well‐being than found in ISPs of older people. Regarding the use of resources, 42.6% of the ISP goals were associated with resources from specialised services, 31.5% associated with natural resources and 25.9% associated with a combination of both natural and specialised services. In ISPs of people with mild ID, natural resources are more often mentioned, and specialised service‐based resources are less often mentioned than for other people. Conclusions This study offers empirical feedback on ISP practices in the field of ID in the Netherlands. In light of current ISP practices, results suggest that attention should be paid to: (1) distinguishing between a ‘service contract’ and an ISP; (2) keeping a focus on the whole person in all age groups and levels of functioning and (3) involving the service recipient in ISP development and implementation.
Article
Background Sexuality and relationship education for adults with an intellectual disability has failed to include them in roles other than as learners. This paper reports findings from a study of the experiences of peer educators with an intellectual disability who co-facilitated a respectful relationships education program. Method Qualitative data were collected about the experiences of 16 peer educators through in-depth interviews and observations of their work in delivering the program. These data were thematically analysed. Findings Peer educators reported that peer education gave them a sense of empowerment, positioned them as credible sources of information about relationships, enabled them to help others, and gave them an opportunity to learn new knowledge about respectful relationships, community resources and supports, and new skills. Conclusions This study presents an alternative approach to relationship education that involves people with an intellectual disability as peer educators and that benefits these people.