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Literature review on provision of appropriate and accessible support to people with an intellectual disability who are experiencing crisis pregnancy
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| Title: | Literature review on provision of appropriate and accessible support to people with an intellectual disability who are experiencing crisis pregnancy |
| Authors: | O'Connor, Joan |
| Affiliation: | Crisis Pregnancy Agency, National Disability Authority |
| Publisher: | Crisis Pregnancy Agency |
| Issue Date: | 21-Feb-2011 |
| URI: | http://hdl.handle.net/10147/122586 |
| Additional Links: | http://www.crisispregnancy.ie/research3.php |
| Type: | Report |
| Language: | en |
| Description: | The Crisis Pregnancy Agency [2] and the National Disability Authority
commissioned this systematic review of Irish and international
literature to identify international models of good practice regarding
crisis pregnancy counselling and support services for women with an
intellectual disability experiencing a crisis pregnancy. A further aim of
this review was to inform the future development of guidelines for crisis
pregnancy counsellors and GPs on providing appropriate and accessible
support to people with an intellectual disability who are experiencing
crisis pregnancy.
For the purpose of the review, a crisis pregnancy is defined as “a
pregnancy which is neither planned nor desired by the woman concerned
and which represents a personal crisis for her”. [3] This definition
includes the experiences of those women for whom a planned or
desired pregnancy develops into a crisis over time due to a change in
circumstances. It is important to state that, within the review, not all
pregnancies experienced by women with an intellectual disability are
assumed to be a crisis pregnancy.
The main findings and commentaries of the review of the literature
include the following:
• The review of literature demonstrated international legislation,
structures and codes of practice on capacity to consent of an
individual with an intellectual disability incorporating consent to
medical treatment decisions. While there is protective legislation
internationally addressing capacity to consent to sexual relations
for this group, this area remains less developed in relation to
assessment of capacity to consent. In addition, there was only
one study retrieved over the course of the review relating to crisis
pregnancy among individuals with an intellectual disability, as
defined by the Crisis Pregnancy Agency.
2 Since this review was commissioned the Crisis Pregnancy Agency has been
integrated into the Health Service Executive (HSE) and is now the HSE Crisis
Pregnancy Programme. It is a national programme working within the Children
and Family Social Services Care Group in the HSE.
3 Crisis Pregnancy Agency definition of a crisis pregnancy, as set out by the
Statutory Instrument, S.I. No. 446 of 2001, the Crisis Pregnancy Agency
(Establishment) Order, 2001.
PAGE 17
• The pattern of contraceptive use amongst women with
intellectual disability differs widely from that of the non-disabled
population. Longstanding research confirms the Pill, Depot
Medroxyprogesterone Acetate and IUDs are the only methods
used by most women with learning disabilities, with barrier
methods being reported as unheard of. It has been argued that
the prescribing of these particular methods of contraception
assumes that women with learning disabilities are incapable or
unreliable when it comes to contraceptive decision-making and
managing their fertility (McCarthy, 1999). As such, decisions
surrounding the use of contraception may be made by others on
behalf of the woman.
• International models of best practice and related supports
regarding capacity to consent to medical treatment among
women with an intellectual disability are considered, including
the functional approach to capacity, providing for longer
consultation periods with primary care practitioners, the
provision of appropriate sex education and resources and the
adoption of an individualised, person-centred, multidisciplinary
approach to sexual health care for persons with intellectual
disability.
• Legislation on capacity to consent to sexual relations exists
in other jurisdictions, and varies in the degree of protection
provided versus autonomy allowed. Laws that prohibit sex with
people deemed unable to consent to sex are based on the need
to protect individuals with an intellectual disability as they are
assumed to lack capacity to consent to sexual relationships. In
Ireland Section 5 of the Criminal Law (Sexual Offences) Act 1993
falls under this category and serves to criminalise sexual activity
with a person who has a ‘mental impairment’ and who is not
married. Thus, it may be an offence to engage in sexual activity
with a person with an intellectual disability, even if the person
consents.
• The review considers the complex area of capacity to consent
to sexual relations and the protective legislation that exists in
PAGE 18
international jurisdictions including laws which prohibit sex with
people deemed unable to consent to sex, laws which incorporate
a functional approach to assessment of capacity to consent to
sexual relations, generic laws applying to sex without consent
and laws which prohibit specific sexual relationships.
• There is a lack of empirical evidence on the individual experience
of crisis pregnancy, pregnancy and childbirth among women
with intellectual disability, to inform professional practice. There
is limited research related to how a woman with intellectual
disability conceptualises her pregnancy and whether it was
unplanned, unwanted or a crisis for her. The research that does
exist suggests that the number of women with intellectual
disability having children is increasing and that when a woman
announces her pregnancy, the reactions of people close to
her are almost exclusively negative. Other challenges faced by
women with an intellectual disability experiencing pregnancy
and parenthood include accessing sexual health information,
accessing sexual health services, inadequate information and
negative attitudes to pregnancy and parenthood among service
providers and the wider community.
• The review considers the importance of early presentation to
medical services when a woman with an intellectual disability
discovers her pregnancy. Furthermore, it considers pre- and
post-natal supports for women experiencing pregnancy, as well
as supports for their families and carers.
• A consistent finding in the international literature is that mothers
with intellectual disability experience poverty, anxiety and
social isolation and tend not to have the necessary supports in
place to cope with difficulties that they encounter as parents.
Furthermore, the research has established the importance of
family and social support networks as well as information and
education in assisting mothers with an intellectual disability in
raising their children.
PAGE 19
• The review considers the literature relating to how the family,
social networks, carers and professional services can facilitate
women with an intellectual disability to achieve the best
outcomes for themselves as parents and for their children. |
| Keywords: | DISABILITIES
INTELLECTUAL DISABILITY
PREGNANCY |
| Local subject classification: | CRISIS PREGNANCY |
| ISBN: | 9781905199242 |
| Appears in Collections: | Disability
|
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