Literature review on provision of appropriate and accessible support to people with an intellectual disability who are experiencing crisis pregnancy

2.50
Hdl Handle:
http://hdl.handle.net/10147/122586
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
Item 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

Full metadata record

DC FieldValue Language
dc.contributor.authorO'Connor, Joanen
dc.date.accessioned2011-02-21T16:27:55Z-
dc.date.available2011-02-21T16:27:55Z-
dc.date.issued2011-02-21T16:27:55Z-
dc.identifier.isbn9781905199242-
dc.identifier.urihttp://hdl.handle.net/10147/122586-
dc.descriptionThe 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.en
dc.language.isoenen
dc.publisherCrisis Pregnancy Agencyen
dc.relation.urlhttp://www.crisispregnancy.ie/research3.phpen
dc.subjectDISABILITIESen
dc.subjectINTELLECTUAL DISABILITYen
dc.subjectPREGNANCYen
dc.subject.otherCRISIS PREGNANCYen
dc.titleLiterature review on provision of appropriate and accessible support to people with an intellectual disability who are experiencing crisis pregnancyen
dc.typeReporten
dc.contributor.departmentCrisis Pregnancy Agency, National Disability Authorityen
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