Appendix 6 - Tables 8 and 9

U.K.

To increase awareness of sexual health needs of persons with ID.

Not research article.

Not research article.

Lack of integration between services.

Northern Ireland

To highlight the need to attend to the health of people with ID.

Retrospective review of health screening.

373 persons with intellectual disabilities.

Lack of integration between services.Lack of awareness of the health needs of persons with intellectual disabilities.

U.K.

To explore the uptake of breast and cervical screening by women with ID.

Audit of screening.

48 women with intellectual disabilities.

Difficulty in obtaining compliance and cooperation from women with intellectual disabilities.

U.K.

To review the research literature in order to draw out lessons for practice.

Literature review.

Literature review.

Presumptions about parental abilities. Public prejudice and attitudes effectively exclude persons with ID from using services, including maternity services. Social and economic disadvantages have negative effects on ability of people with ID to achieve parental success.

U.K.

To examine the role of men in the lives of mothers who have intellectual disabilities.

Secondary analysis of 3 qualitative studies.

Narrative study - 33 parents, at least 1 with ID (probably mild, but not stated) and 30 adult children with a parent(s) who had ID

The removal of children from parents with intellectual disabilities is associated with intense hardship and grief.

U.K.

To explore women with ID's perspectives on the cervical smear test.

Qualitative interviews.

52 women with intellectual disabilities and 34 carers.

Lack of knowledge and information on the part of the women and service providers.

Australia

To examine attitudes about sexual expression of persons with ID

Quantitative study using attitudinal scale.

43 parents of an adult with ID; 62 support staff; 63 community individuals.

Conservative and negative attitudes to sexuality and parenthood.

U.K.

To explore women's experience in respect of their menstrual health.

Qualitative research.

11 women with intellectual disabilities.

Uncertainty and confusion with the menstrual cycle. Negative attitudes to menstruation and, through this, to sexuality.

Ireland

To explore caregivers' and parents' views on sexuality.

Quantitative descriptive.

45 primary carers.

Relationship between attitudes to sexuality of people with intellectual disabilities is influenced by age and religious practice.

Ireland

N/A

Legal statute.

Not research article.

Defines sexual intercourse/or attempted sexual intercourse with a person who is 'mentally impaired' to be a criminal offence.

International

To set out a position on parenting by persons with intellectual disabilities.

Position paper

Not research article.

Sets out the position of the International Association for the Scientific Study of Intellectual Disabilities on parents and parenting by persons with intellectual disabilities.

U.S.A.

To describe and quantify the risk for developmental delay among children born to mothers with intellectual disabilities.

Quantitative research study.

50 mothers with intellectual disabilities and 50 mothers without intellectual disabilities from low income families.

Children born to women with intellectual disabilities are more likely to experience developmental delay, due not to poverty but to inadequate parenting support.

U.K.

To explore mental health needs of women with ID.

Not research article.

Not research article.

Limited access to health care. Services must be able to respond to the needs of women with intellectual disabilities.

U.K.

To examine the social support networks of mothers with intellectual disabilities.

Mixed methods.

15 mothers with intellectual disabilities.

Lower numbers of valuable social contacts are associated with reduced self-esteem and greater stress amongst these women.

Northern Ireland

To examine views that prevent positive sexual health in women with disabilities.

Not research article.

Not research article

Infantilisation of women with intellectual disabilities. Criminalisation of sexual activity on the basis of mental incapacity.

Australia

To explore the views of mothers with ID regarding support received.

Qualitative interviews.

70 mothers with intellectual disabilities and pre-school children.

Mothers with intellectual disabilities often live outside familial support networks. This is associated with greater stress and poorer health than in the mainstream population.

U.S.A.

To describe the experiences of parents with intellectual disabilities in court proceedings.

Discursive examination of court proceedings.

Not a research study.

Parents with intellectual disabilities who are already experiencing stress often experience discrimination in statutory child protection proceedings.

Australia

To examine the variation in outcomes among children of people with ID.

Randomised controlled trial.

45 parents with intellectual disabilities.

There is little understanding of how women with ID care for themselves during pregnancy. No understanding of the requirements of these women during the antenatal and perinatal stages.

Australia

To explore the prevalence of poor pregnancy and birth outcome in women with ID.

Cohort study employing antenatal clinic records.

57 women with intellectual disability and/or self-reported learning difficulties.

There are higher odds of negative birth outcomes for women with intellectual disabilities - pre-eclampsia, low birthweight and admission of baby to the neonatal intensive care unit.

Ireland

See Table 5.

See Table 5

See Table 5

Negative attitudes and reactions to disabled women's sexuality and reproductive health.

U.S.A.

To examine mother-child relationships and self-esteem of children of mothers with ID

Quantitative study.

36 children of mothers with intellectual disabilities.

Societal and research foci tend to be on the welfare of children and not on that of mothers.

U.K.

To explore women's experiences of menstruation and its management

Cross-sectional postal questionnaire survey.

454 questionnaires from women with intellectual disabilities aged between 14 and 55.

Menstruation is problematic for women with intellectual disabilities. Much support is given by carers but more formal education and support is needed.

Ireland

To review the literature on parenting by women with ID

Literature review.

Literature review.

The lack of planning for prospective mothers with intellectual disabilities.

Northern Ireland.

To examine the feelings, attitudes and experiences of people with ID regarding sex and sexuality

Mixed methods.

>500 people including persons with intellectual disabilities, family carers, frontline staff and professionals.

People with intellectual disabilities often are considered unable to make decisions about their sexuality and reproductive health.Such decisions are frequently made by family carers irrespective of the wishes of the persons with intellectual disability.

Australia

To examine the reality of institutional violence towards women with disabilities.

Historical research

The effect of eugenics and institutionalisation on women, focusing specifically on motherhood.

U.K.

See Table 11

See Table 11

See Table 11

Prolonged preparation; improved communication; the giving of information; support for the carers.

U.S.A.

The effectiveness of training parents with ID

Quantitative survey.

20 professionals involved in parent-training.

Early intervention in childcare is associated with improved parental outcomes.

Ireland

Legal statute.

Not a research study.

Not a research study.

Sets out the right of persons with disabilities to having an independent assessment of their needs carried out.

Australia

To describe the experience of becoming a mother for women with intellectual disabilities.

Phenomenology

17 expectant mothers with intellectual disabilities.

Expectant mothers with intellectual disabilities seek out support from key individuals and develop their own networks.

Australia

See Table 11

See Table 11

See Table 11

The use of extended consultation times, communication aids and audio-taping of consultations may improve A/N care.

Northern Ireland.

See Table 11

See Table 11

See Table 11

People with ID can make decisions about sexuality and reproductive health if proper education is given to them and their carers.

U.K.

To identify supportive structures for parents with ID

Cohort study

30 parents with intellectual disabilities.

Access to supports that are provided in an integrated manner leads to improved parenting outcomes.

U.S.A.

To examine ability of mothers with ID to learn effective decision making

Interventional experimental research.

9 mothers with mild levels of intellectual disability

Mothers with mild levels of intellectual disability can learn the main components of decision making.

Geneva

Convention on rights of persons with disabilities.

Not a research study.

Not a research study.

Women with disabilities have a right to equality in terms of 'human rights and fundamental freedoms', and the right to individually-focused health services.