Sexual knowledge of women with learning disabilities in secure settings attitudes and shows wide range of misunderstandings and confusions

There is sparse evidence for the efficacy and safety of antipsychotics in people with learning disabilities.

Research in the field of mental health has suggested associations between risky sexual behaviour and common psychiatric conditions, with higher than prevalence rates of HIV than found in the national average, risk of sexual coercion and high rates of relationship breakdown.

The authors of this paper suggest that there are encouraging signs of positive attitudes in staff, but at present, little known about the actual sexual knowledge and experience of people with learning disabilities.

They carried out the study in the Women’s Service of St. Andrew’s Healthcare in Northampton and set out to develop a screening and assessment tool to identify and measure the sexual knowledge and attitudes of women in secure settings with
average and below-average intellectual ability, to be known as the St Andrews Sexual Knowledge and Attitudes Instrument (SASKAI)

What they did was to develop the tool in a number of stages as follows:

  • work with a multidisciplinary staff group to generate items for the tool. The questions developed by modifying them to ensure they were relevant to women in mental health and learning disability settings.
  • develop a three-point scoring method 0 (very limited knowledge of the concepts being discussed), 1 (some knowledge) and 2 (adequate knowledge).
  • pilot questions and administration of the questionnaire with twenty-seven patients from two admission wards
  • work with staff to consider additional workload of using questionnaire
  • work to determine validity of questions by asking staff to rate how far questions on the tool reflected sexual knowledge, attitudes and risks on a scale from ‘not very well’ to ‘very well’.
  • Check of ease of comprehension of the questions using the Flesch readability formula, which is designed to show comprehension difficulty of academic English
  • check of inter-rater reliability by two of the authors re-rating the same questionnaire used previously, 4 weeks later.

The tool eventually had sixty-seven items. 27 of the key questions were ‘grouped’ under headings

  • sexual orientation
  • anatomy
  • menstruation
  • sex
  • conception
  • contraception
  • STIs
  • relationships
  • a review section including questions on risk

The 40 remaining supplementary questions were used in a longer version of the questionnaire to be used for more in-depth investigation if after the short form had been completed it was felt that more information about gaps in knowledge was required, or for those individuals who had a history of difficulties relating to sexual knowledge, attitudes or behaviours.

They found that the administration of the 27-item questionnaire took between 10 and 30 min. The longer 67-item version needed 2 or more 40-min sessions.

The work they did with staff to develop the tool suggested it was sufficiently valid, relevant, comprehensible (to people at education level of 8 years) and had good inter-rater reliability.

In relation to the sexual knowledge, attitudes and needs of the 16 women with learning disabilities who completed the screen, they found a wide range of misunderstandings and confusions, including

  • difficulties with names and functions of internal body parts
  • beliefs that is was not possible to become pregnant while menstruating
  • general lack of understanding about orgasm and foreplay.
  • limited knowledge of sexually transmitted infection (STI)

The authors suggest that the approach they took has led to the development of a potentially reliable, valid instrument for assessing the extent of sexual knowledge among women with learning disabilities in secure settings. They suggest that the date collected in the field on their small group of participants (n=16) showed results that were consistent with findings from previous work, and highlighted poor sexual knowledge and potentially dangerous misconceptions.

They suggest that the St Andrews Sexual Knowledge and Attitudes Instrument (SASKAI) can provide baseline knowledge about sexual health and needs and support the development of individual or group psycho-educational interventions

At present, the service at St Andrews is using this tool across the population of the women’s service to “gain a better understanding of trends in knowledge and deficits across the service to inform the development of a service-specific intervention programme.”

Assessing the sexual knowledge of women in secure settings: the development of a new screening measure, Long C et al., in British Journal of Learning Disabilities, 41: 51–65

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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