Literature Review on Provision of Appropriate and Accessible Support to People with an ...

242 Pages·2011·1.32 MB·English

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Literature Review on Provision of Appropriate and Accessible
Support to People with an Intellectual Disability who are
Experiencing Crisis Pregnancy
ISBN: 978-1-905199-24-2
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Literature Review on Provision of Appropriate and Accessible Support
to People with an Intellectual Disability who are Experiencing Crisis
Pregnancy
Joan O’Connor
ISBN: 978-1-905199-24-2
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Foreword by the HSE Crisis Pregnancy Programme
On behalf of the HSE Crisis Pregnancy Programme (formerly the Crisis
Pregnancy Agency), I welcome the findings of this literature review
relating to intellectual disability, pregnancy, counselling, and crisis
pregnancy.
The study, which was jointly commissioned by the National Disability
Authority and the Crisis Pregnancy Agency, aimed to describe the key
challenges faced by women with intellectual disabilities in accessing
health and social work services during crisis pregnancy. The study also
aimed to identify international models of good practice regarding crisis
pregnancy counselling and support services for women with intellectual
disabilities experiencing a crisis pregnancy.
The comprehensive examination of Irish and international literature
presented in the report reveals that there is very little research
investigating crisis pregnancy among women with intellectual disability.
However, the review does reveal specific challenges in relation to
preventing crisis pregnancy for women with intellectual disability,
such as lack of knowledge surrounding sexual relationships, increased
vulnerability to sexual exploitation and lack of appropriate support
services.
The review also demonstrates that sexual health care and relationships
for women with intellectual disability are complicated by legal and
technical issues surrounding her capacity to consent, both to medical
treatment (including contraception) and to sexual intercourse. Negative
attitudes to sexual activity among people with disabilities, a desire to
protect women from exploitation and lack of specialised care to enable
women to participate in healthcare and reproductive decision-making
can compromise the level of care a woman with an intellectual disability
receives.
While the review identifies many challenges and barriers faced by
women with intellectual disability it also demonstrates that providing
appropriate education and support services, supported by an effective
legal framework, can improve such women’s participation in decisions
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that affect their lives and lead to better sexual health and reproductive
outcomes.
It is hoped that by identifying key elements of international best practice
in the delivery of sexual health and parenting supports to people with
intellectual disability, this review will contribute to the development of
national policy and legislative structure, standardised care protocols and
accessible, tailored services. These developments will respond in the
best possible way to the sexual health, pregnancy and parenting support
needs of women with intellectual disability throughout Ireland.
I would like to thank the Board of the Crisis Pregnancy Agency for their
involvement in the initiation, review and sign-off this important report.
The Crisis Pregnancy Agency partnered with the National Disability
Authority to commission this research. I would like to thank Dr. Stephanie
O’Keeffe and Dr. Roisin Morris Coyle of the Crisis Pregnancy Agency and
Mary Van Lieshout and her team in the National Disability Authority for
working closely together and with the author of the report in steering this
project to its conclusion. I would like to thank Eilis Barry, who reviewed
the report from a legal perspective.
Finally, I would like to thank the report’s author, Joan O’Connor, for her
hard work and commitment in synthesising and critiquing so well, such
a large and diverse body of research. I share with Joan and the National
Disability Authority a hope that this report will open up the discussion
about issues relating to sexual health, crisis pregnancy and parenting
among those working with people with an intellectual disability.
Caroline Spillane
Director
HSE Crisis Pregnancy Programme
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Foreword by the National Disability Authority
The National Disability Authority is pleased to present the Literature
Review on Provision of Appropriate and Accessible Support to People
with an Intellectual Disability who are Experiencing Crisis Pregnancy,
which was jointly commissioned by the National Disability Authority and
the Crisis Pregnancy Agency. The review offers a valuable contribution
to policy and practice. The identification of good practice in other
jurisdictions in counselling and support services for women with an
intellectual disability experiencing a crisis pregnancy offers important
learning for both the future design and enhancement of existing service
provision in Ireland. Current research suggests that the number of
women with intellectual disability having children is increasing, which
makes it all the more important that adequate and appropriate supports
are in place to respond to need.
The research also focuses on areas which are very relevant to the
legislation on legal capacity to enable Ireland comply with Article 12
of the UN Convention of the Rights of Persons with Disabilities. The
Convention provides that people with disabilities shall enjoy legal
capacity on an equal basis with others in all aspects of life. The review
looks at how the capacity of women with an intellectual disability to
consent to medical treatment decisions, and how their capacity to
consent to sexual relations, are currently legislated for in Ireland and in
other jurisdictions. The question of capacity to sexual relations raises
complex questions, where the breadth of information and clarity of
discussion in the review offers important guidance for future direction on
this challenging issue.
In comparing the situation in other jurisdictions, the review highlights
that there are no simple solutions to these issues. The legal and support
frameworks need to get the balance right between supporting and
enabling women with intellectual disabilities to consent to their own
healthcare and sexual relations decisions, and protecting them from
sexual exploitation and abuse. The review offers useful information and
analysis to support policy consideration in this area.
This review also covers a range of other issues relating to the practical
experiences of women as parents with an intellectual disability. This
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includes the role of family members in support networks, alongside
formal supports, and the importance of appropriate sex education
programmes. In addition, the review covers the pregnancy experiences
of women with an intellectual disability, which provides an important
human dimension alongside legislative considerations. This work
complements National Disability Authority research on the experiences
of women with disabilities in pregnancy and early motherhood (2010).
The findings of the review should be of interest to a wide range of
stakeholders and will provide an important evidence base for shaping
their deliberations on how best to support women with an intellectual
disability.
Ms. Siobhán Barron
Director
National Disability Authority
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About the author
Joan O’Connor graduated with an MSc in Applied Social Research in
2001 from Trinity College, Dublin and since then has worked as a social
researcher in Women’s Studies, School of Social Justice, University
College Dublin, and as an independent researcher in Ireland and
internationally. She has worked on a range of research projects in the
areas of gender and disability, crisis pregnancy and disability, violence
against women, gender and equality, social policy, women’s adult
education and globalisation. She is currently working as a researcher
in the Centre for Disability Studies, School of Psychology, in University
College Dublin carrying out research on disability and abuse.
Acknowledgements
I am very pleased to have carried out this research on behalf of the
Crisis Pregnancy Agency and the National Disability Authority and would
like to commend them, in particular Dr. Stephanie O’Keeffe and Mary
Van Lieshout, for their guidance, and vision in prioritising knowledge
development and dissemination in this area. I would also like to sincerely
thank Catherine Conlon, who acted as research advisor and provided me
with invaluable support and advice throughout the research process. I
hope that this work will provide a useful information resource for policy
makers and service providers, and assist in our understanding of the
development of appropriate health and social care services for women
with intellectual disability who are experiencing crisis pregnancy.
The views expressed in this report are those of the authors and do not
necessarily reflect the views or policies of the sponsors.
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Table of contents 10
Glossary of terms 15
Executive summary 16
1.0 Introduction 20
1.1 Introduction 20
1.2 Research aims 20
1.3 Guiding principles underpinning review 21
1.4 Methodology 23
1.4.1 Inclusion criteria for literature 23
1.4.2 Search techniques 24
1.4.3 Limitations 26
1.5 Population with an intellectual or learning disability 27
1.6 Definitions and their meaning and usage 29
1.7 Heterogeneity 31
1.8 Level of disability 31
1.9 Attitudes towards women with intellectual disabilities and sexuality 32
1.10 Structure of the review 37
2.0 Contraception and consent to medical treatment 38
2.1 Introduction 38
2.2 Contraceptive provision for women with intellectual disability 38
2.3 Research on use of contraception 39
2.3.1 Type of contraception used 39
2.3.2 Factors influencing contraception usage 41
2.3.3 Decision-making and contraception 44
2.4 Legal framework governing capacity to consent 45
2.4.1 Legal framework governing capacity in Ireland 46
2.4.2 Legislative reform in Ireland – Scheme of Mental Capacity
Bill 2008 47
2.5 Scheme of Mental Capacity Bill, 2008 48
2.5.1 Guiding principles 49
2.5.2 Approach to decision-making 50
2.5.3 Guardianship 51