Download Relationships, sexuality and decision

Relationships, sexuality and decision-making capacity in people
with an intellectual disability
Brian E. McGuire and Austin A. Bayley
Clinical Psychology Programme, School of Psychology,
National University of Ireland, Galway, Ireland
Correspondence to Dr Brian E. McGuire, School of
Psychology, National University of Ireland, Galway,
Ireland
Tel: +44 353 91 493266; fax: +44 353 91 534930;
e-mail: [email protected]
Current Opinion in Psychiatry 2011, 24:398–402
Purpose of review
The current review attempts to summarize the current status of our knowledge and
clinical practice in the complex and challenging area of relationships and sexuality for
people with an intellectual disability.
Recent findings
Although there has been an ideological shift within services for people with an
intellectual disability towards person-centredness and inclusivity, this change has not
manifested in an obvious way at the practice level in the area of relationships and sexual
expression. Recent surveys of caregivers and service providers do show a greater
awareness of the fact that sexuality is a central part of personal identity, yet generally
restrictive or prohibitive attitudes prevail at both individual and organizational levels.
These attitudes appear to reflect a fear of possible legal sanction as well as ethical and
moral conflicts. The views and experiences of people with an intellectual disability
generally confirm this impression that, whereas some small changes have taken place,
the prevailing experience is of restriction. Whereas there is now an abundance of
sexuality and relationship educational programmes available, they require more rigorous
and systematic evaluation both in terms of their effectiveness for enhancing knowledge
and, more importantly, for examining the impact of that education on behaviour and
capacity to make sexuality-related decisions, which we know to be a fluid ability.
Summary
There is a need for greater education of caregivers and a need for discussion of the
complex issues regarding relationships and sexuality at a societal and policy level. The
development of self-advocacy in disability services provides a vehicle to operationalize
the changing service ideologies in a way that provides greater opportunities for
enriching relationship experiences whilst also preventing undue risk of harm. However,
successful self-advocacy requires organizational support, and this remains the greatest
challenge for service providers.
Keywords
capacity to consent, intellectual disability, relationships, sexuality
Curr Opin Psychiatry 24:398–402
ß 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
0951-7367
Introduction
Over the past 40 years, changes have been espoused
in service philosophy and ideology which emphasize
the rights of people with an intellectual disability. Such
person-centred ideologies typically identify the right
to form intimate relationships and service users often
identify their desire to form relationships. However,
caregivers and service providers face a difficult dilemma
in promoting sexual autonomy among people with an
intellectual disability when there often remains a culture
of conservatism and paternalism and within a context
of legal and ethical uncertainty about the rights and
responsibilities of caregivers, service providers and the
service users themselves.
0951-7367 ß 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Although there are rarely clear answers to complex
questions about relationships and sexuality, the issue
warrants acknowledgement, exploration and discussion
among stakeholders such as service users, their caregivers, the providers of services, clinicians and researchers, policy makers and the judiciary.
In this review, we outline some of the emerging areas
of research activity that hold promise in assisting stakeholders to reach an agreed middle ground on the thorny
issue of sexual expression among people with an intellectual disability.
We address the following areas: the knowledge and
attitudes of caregivers (parents, family members and
DOI:10.1097/YCO.0b013e328349bbcb
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Sexuality and intellectual disability McGuire and Bayley 399
professionals) towards the sexuality of people with an
intellectual disability; the knowledge, attitudes and
experiences of people with an intellectual disability
regarding sexuality and relationships; the status of
education programmes focused on relationships and
sexuality; the issue of capacity to make choices and
decisions regarding sexuality and relationships; and areas
for future research.
Attitudes towards sexual expression among
caregivers
Given that people with an intellectual disability live their
lives within several interacting social systems (including
family systems, peer systems, school or work systems,
community systems and legal systems), it is important
to understand the norms and mores that may be influential
in terms of opportunities for development of a sexual
identity. Cuskelly and Gilmore [1] argue that attitudes
towards the sexual expression of adults with an intellectual
disability are a barometer of the level of openness and
inclusiveness of a community. In a study to evaluate
community attitudes, they found that respondents recognized the multifaceted nature of sexual behaviour and
that attitudes towards the sexual rights of people with an
intellectual disability were more positive than anticipated.
Further community studies are needed in order to place
the issue of sexual expression of people with an intellectual
disability within a representative social context.
A study exploring the knowledge, opinions, attitudes and
concerns of parents regarding the sexuality of their adolescent children with an intellectual disability found that
most of the parents had concerns regarding the sexuality
of their son or daughter and suggest that professional
supports are necessary to assist parents in dealing with the
complex range of issues surrounding sexuality [2].
Brown and Pirtle [3] argued that, because children
and young people are highly likely to be shaped by
the attitudes, beliefs and behaviours of their primary
caregivers, there is a need to understand the complex
belief systems of those caregivers, particularly when their
views may be an obstacle to providing education about
personal development and sexuality. The authors point
out that caregiving behaviour is likely to be predicated on
the carer’s own belief system and that this will inevitably
impact on the education and services provided to the
person in their care. The authors suggest that being
personally aware of the influence of one’s own belief
systems may enhance the care and education provided to
those in one’s care. However, whereas such awareness is a
necessary condition for behaviour change among caregivers, it may not be sufficient. It is well known that
stated attitudes and personal behaviour are not always
strongly associated. Therefore, further research is needed
Key points
Despite changes in service ideology, people with
an intellectual disability continue to experience
prohibitive attitudes and restrictive practices in
terms of opportunities for sexual expression.
More research is required to gain a better understanding of the experiences, beliefs and attitudes of
caregivers and communities in general, so that
obstacles to sexual development can be addressed.
Programmes for sex and relationship education are
generally not well evaluated and lack a theoretical
underpinning – there is a need for better designed
studies to improve the evidence base.
Capacity to make sexuality-related decisions is a
fluid process and is amenable to change in response
to targeted interventions.
The self-advocacy movement has played an important role in promoting the rights of people with an
intellectual disability. Further research on the facilitation and implementation of leadership development opportunities is recommended.
to examine whether differences in attitudes and beliefs
are reflected in the education and other care provided to
the person with an intellectual disability.
Studies have also compared the views of different groups
of caregivers. For example, paid caregivers were found in
general to have more liberal views than family caregivers
[4]. Frontline staff members were reported to be more
likely to support service-user engagement in varied
relationships, whereas four out of five family interviewees
showed a distinct preference for low levels of intimacy in
service-user relationships [5]. More extensive training
was found to be associated with more liberal attitudes
amongst staff [6], as was previous exposure to training in
the area of sexuality and relationships [4].
Thus there is a growing knowledge of the range of
attitudes among caregiver groups and this will have
important implications for educating and supporting caregivers. Brown and Pirtle [3] noted that a range of other
factors may also influence how sexuality is expressed,
including culture, religious preferences, socio-economic
status and ethnic background. These areas remain relatively unexplored in the context of sexuality and people
with an intellectual disability.
Attitudes towards sexual expression among
service users
Within the context of changing service ideologies, more
research to garner the views of service users is now being
undertaken. A recent study has reported on the distinct
lack of privacy for intimacy and sexual expression within
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
400 Mental retardation and developmental disorders
residential settings, resulting in a need to resort to using
isolated public or semi-private spaces to be sexually active
[7].
inclusive and collaborative decision-making process are
needed and should be addressed in future research.
Healy et al. [4] interviewed 32 service users and found
that participants had distinct difficulties exercising their
full sexual autonomy and rights, due to social and environmental barriers. Participants aspired to sexual relationships
and in some cases to becoming parents and possessed an
adequate understanding of issues such as companionship,
relationship responsibilities, parenting, masturbation, privacy and need for tolerance and cooperation from care
staff members. Interviewees showed relatively low tolerance of premarital sex and homosexual activity, possibly
reflecting social desirability responding or exposure to the
views of influential caregivers.
Education programmes to enhance sexual
knowledge
Kelly et al. [8] also conducted a focus group with 15
participants and found that intimacy was coloured by the
participants’ experience of restrictions around relationships; for example, some participants reported being
chastised by staff members for kissing, being monitored,
and feeling pressured to end their relationships or keep
them secret.
In an interesting study, researchers interviewed young
gay people with an intellectual disability, their parents
and staff [9]. The results suggested that young homosexuals with an intellectual disability are an invisible
group, and that opportunities for sexual expression were
influenced by their environment and the attitudes and
behaviours of caregiver staff. Withers et al. [10] previously
found that gay men with an intellectual disability were
particularly at risk of exploitation. This vulnerability
was confirmed more recently in a study with 10 men
with a mild disability, which found that they were likely
to have difficulties with condom use, both at a practical
level and in terms of negotiation, which clearly increases
personal risk. Some of the men were cohabiting with
partners and this was expressed in positive terms [11].
Studies examining healthcare decision-making for people
with an intellectual disability show that decision-making
is rarely fully collaborative [12]. This is highlighted in
studies of contraceptive use in people with an intellectual
disability, which indicate that decisions are frequently
made by family members, paid caregivers, or health
professionals without adequate discussion with the
individual involved [13]. This is the case even for more
invasive procedures, such as sterilization [14].
These studies highlight the generally restrictive experiences of sexuality for people with an intellectual disability,
juxtaposed with a wish for relationships and intimacy, and
in some cases for marriage and parenthood. The development and evaluation of mechanisms which promote a more
Sexual knowledge among those with an intellectual
disability is typically limited in comparison to the general
population, particularly in the areas of sexually transmitted diseases (STDs), sexual health, safer sex practices,
legal issues and contraception [15,16].
Sex education programmes tend to place an emphasis on
heterosexual dating and Lofgren-Martenson [9] has
proposed the inclusion of different sexualities in the
sex education curriculum and further research concerning
homosexuality/bisexuality and intellectual disability. A
particular area of need is the development of staff training
and policy making for gay, lesbian and bisexual (GLB)
service users with an intellectual disability [17]. Staff
members reported that they believed themselves to be
ill-equipped to work effectively with such issues.
Obstacles included insufficient policy and training, in
addition to the prejudice of staff and parents/carers [17].
The need for comprehensive relationship and sexuality
education for adults with an intellectual disability is
indisputable. However, creating and delivering educational programmes is far from straightforward. Many
factors must be considered in delivering education
programmes to people with an intellectual disability,
including the impact of cognitive disabilities, lower
literacy, discomfort of facilitators in discussing topics of
sexuality, as well as the attitudes and values held by the
facilitators [18].
A review of the features and limitations of some of the
relationship and sexuality programmes highlighted the
lack of empirical evidence to support most of the interventions because of a lack of control groups, small sample
sizes, and lack of clarity about the sample characteristics.
The review also identified a number of important areas for
future research, including a need to evaluate the efficacy of
group work when compared with individual training in sex
education, to compare the comparative effectiveness of
education delivered by the various professional and caregiver groups, and to evaluate the extent to which pictorial
detail facilitates or hinders understanding [19].
Katz and Lazcano-Ponce [20] suggested six learning
objectives that should be included in educational
interventions, including taking responsibility for sexual
behaviour, sexual activity, birth control, marriage and
parenthood, STDs and their prevention, and, lastly,
unacceptable and criminal sexual activity. It remains to
be seen whether other key ingredients must be added.
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Sexuality and intellectual disability McGuire and Bayley 401
In a provocative and thought-provoking position paper on
the social construction of sexuality and the implications
for sex education, Gougeon [21] highlights the problem
of the ‘ignored curriculum’ in sex education – the
incidentally learned aspects of sexuality and sexual norms
that are learned through incidental and informal contact
with peers, typically through discussion and sharing of
information. She proposes that such learning opportunities must be formalized within the relationships and sex
education curriculum if they are not available through the
usual social structures. While acknowledging that people
with an intellectual disability are more vulnerable to
abuse and exploitation, she cautions that the experience
of relationships, with their trials and tribulations, is
a necessary part of the development of socio-relational
skills. People without an intellectual disability learn
about the complexities of relationships through exposure
and experience. Gougeon proposes that the challenge is
to find a middle ground between the expression of sexual
rights and the protection from undue harm. This is
often referred to as the ‘dignity of taking risks’ and such
calculated risk-taking is indeed part and parcel of everyday life. One of the greatest challenges for educators in
the area of relationships and sexuality is to teach this skill
of being able to prospectively evaluate the costs and benefits of one’s actions and to learn from those experiences.
Within that context of the subtleties of socio-relational
behaviour, there is a paucity of studies that have
identified the specific competences known to be central
to the development of appropriate social relationships,
such as social reasoning, emotional processing, empathy
and theory of mind. Hippolyte et al. [22] conducted an
interesting study with 34 people with Down syndrome to
investigate their ability to judge the appropriateness of
social behaviour in others. The researchers found that
receptive vocabulary and selective attention and a
specific dimension of the socio-emotional profile (social
relating skills) were most strongly associated with the
performance of people with Down syndrome. Research
such as this, which goes beyond merely identifying
deficits in people with an intellectual disability, but
which seeks to understand the specific aspects of sociocognitive reasoning, is essential for the development of
more targeted interventions to enhance social communication skills in people with an intellectual disability.
These studies highlight that relationship and sexuality
programmes are still some way from meeting the needs
of service users and that there is a general need for more
rigorous evaluation of training programmes and a need to
focus on some of the more subtle aspects of social communication as well as the ‘basics’ of sex education. The lack
of theoretical models underpinning education programmes
is immediately evident and provides a possible approach for
the development of more effective programmes.
Capacity to make sexuality-related decisions
One major aspect of the debate on sexuality in adults with
an intellectual disability is the issue of consent to sexual
contact. Although there is no clear definition of capacity to
consent to sexual relations, it has been argued that an adult
person has sexual consent capacity if the requisite rationality, knowledge, and voluntariness are present [23].
In many settings, an ethically and legally precarious
position may occur when an adult with an intellectual
disability desires a sexual interaction, whereas their
guardian opposes it. Guardians and carers have a dual
responsibility to empower and protect persons with an
intellectual disability. It is inevitable that service
providers will have to establish procedures for addressing
such conflicts, and those procedures are likely to be
based on an independent assessment of the individual’s
capacity to make decisions.
Ongoing sex education and higher intelligence quotient
(IQ) have been found to increase potential for sexual
consent capacity, and capacity should be considered as
a fluid concept [16]. Although based on a case series and
requiring replication, the capacity for sexuality-related
decision-making capacity has been shown to be enhanced
through a psycho-sexual education intervention without
any increase in inappropriate sexual behaviour [24].
Importantly, the increased decision-making capacity
was maintained at 6-month follow-up.
Conclusion
Self-advocacy is an important vehicle for people with an
intellectual disability to experience both autonomy and
inclusiveness. In the context of people with an intellectual disability having very few real opportunities to
develop leadership skills through the traditional pathways such as school activities, employment or mentoring
experiences [25], Caldwell [26] carried out a fascinating
study of the experiences of people with an intellectual
disability who had become successful in the self-advocacy
movement. Qualitative interviews were conducted with
13 leaders in the self-advocacy movement in the USA.
Caldwell identified four major themes associated with
leadership development:
(1) Disability oppression and resistance was a common
experience within the life stories of leaders, which
seemed to be the foundation upon which leadership
skills evolved in most cases. Participating in the selfadvocacy movement provided space for individuals to
develop a positive self-concept or disability identity.
(2) Environmental supports and relationships were
important factors in almost every case – a common
theme throughout the life stories of some leaders was
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
402 Mental retardation and developmental disorders
a struggle for independence from parents. Often
the ability to make a stand for independence from
parents was only possible with support and confidence they had gained from the self-advocacy movement. Another common theme across life stories
of many self-advocates was the presence of a key
support person, usually a nondisabled individual.
Finally, access to community services and supports
such as assistive technology, transportation and
personal assistance services was essential.
(3) Individuals credited the following as assisting them
in developing leadership skills: volunteer opportunities, leadership skills from the self-advocacy movement, service on boards and communities, leadership
development workshops and experiences.
(4) Opportunities for advanced leadership development
were identified as a necessity for the development of
other self-advocates.
2
Isler A, Beytut D, Tas F, Conk Z. A study on sexuality with the parents of
adolescents with intellectual disability. Sex Disabil 2009; 27:229–237.
3
Brown RD, Pirtle T. Beliefs of professional and family caregivers about the
sexuality of individuals with intellectual disabilities: examining beliefs using
a Q-methodology approach. Sex Educ 2008; 8:59–75.
4
Healy E, McGuire BE, Evans DS, Carley SN. Sexuality and personal relationships for people with an intellectual disability. Part 1: service-user perspectives. J Intell Disabil Res 2009; 53:905–912.
5
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6
Grieve A, McLaren S, Lindsay W, Culling E. Staff attitudes towards the
sexuality of people with learning disabilities: a comparison of different
professional groups and residential facilities. Br J Learn Disabil 2008; 37:
76–84.
7
Hollomotz A. The Speak-up Committee. ‘May we please have sex tonight?’:
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8
Kelly G, Crowley H, Hamilton C. Rights, sexuality and relationships in Ireland:
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9
Lofgren-Martenson L. The invisibility of young homosexual women and men
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The ability to self-advocate undoubtedly facilitates
greater autonomy in all aspects of life. Having an understanding of the processes and experiences that promote
effective self-advocacy will assist in making selfadvocacy a reality for a greater number of people with
an intellectual disability.
11 Yacoub E, Hall I. The sexual lives of men with mild learning disability:
a qualitative study. Br J Learn Disabil 2008; 37:5–11.
There is a need for further development of sexuality and
relationship education programmes that aim to increase
understanding of both the fundamentals and the complexities of relationships and sexual expression. Whereas
much work has been done in this area already, there is a
need for more rigorous evaluation of outcomes, not only
in terms of information, but in how this information is
used by the person with an intellectual disability. This in
effect relates the acquisition of information to decisionmaking ability – the ‘real-life’ application of information.
Further attention to theoretical models of learning
and to models of psychosexual development may
provide a fruitful basis for developing and improving
intervention programmes and for providing a systematic
way of identifying ‘what works’ from within multicomponent interventions.
Acknowledgements
Conflicts of interest
There are no conflicts of interest.
References and recommended reading
Papers of particular interest, published within the annual period of review, have
been highlighted as:
of special interest
of outstanding interest
Additional references related to this topic can also be found in the Current
World Literature section in this issue (p. 451).
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Provides an important insight into the experiences and process that enabled the
development of leadership as a self-advocate.
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