Dilana Schaafsma

Exploring the Development of Existing Sex Education Programmes for People with Intellectual Disabilities: An Intervention Mapping Approach

Background People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes. Methods Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers. Results All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation. Conclusions Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory- and evidence-based approach.

Identifying Effective Methods for Teaching Sex Education to Individuals With Intellectual Disabilities: A Systematic Review

Sex education for individuals with intellectual disabilities is important. However, our knowledge about effective methods for teaching sex education to this population is limited. We report the results of a systematic review identifying methods for sex education programs aimed at individuals with intellectual disabilities. In all, 20 articles were included that met the criteria set in terms of topic—the effectiveness of sex education programs—and population of interest—individuals with intellectual disabilities. In these articles, methods for increasing knowledge and for improving skills and attitudes were reported. However, the studies revealed that generalization of skills to real-life situations was often not achieved. There are indications that the maintenance of knowledge and skills still needs extra attention. Moreover, detailed descriptions of the program materials, program goals, and methods used in the programs were often lacking in the reports. Although there is some evidence for methods that may improve knowledge, attitudes, and skills with regard to sex education aimed at individuals with intellectual disabilities, due to the lack of detailed descriptions provided it is unclear under which conditions these methods work. We therefore suggest that authors provide additional detail about methods in future publications or in online supplements.

Identifying the important factors associated with teaching sex education to people with intellectual disability: A cross-sectional survey among paid care staff

Abstract Background Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual disability teach sex education or not. An online questionnaire was therefore constructed to assess the important factors associated with teaching sex education. Results Of the 163 staff members who completed the questionnaire, 39% provided sex education. Results show that it was mainly provided reactively. The main factor was the perceived social norm towards teaching sex education. Conclusions If we want paid care staff to teach sex education reactively, then we need to focus on changing the perceived social norm. However, if we want them to teach sex education proactively, a new needs assessment should be conducted in order to identify the important factors to motivate and enable them to provide sex education.

People with Intellectual Disabilities Talk About Sexuality: Implications for the Development of Sex Education

Existing sex education programmes have failed in involving people with intellectual disabilities in the development of these programmes. Not involving the target population decreases the likelihood that the sex education programme will be effective. This study was conducted to assess the perspectives of people with intellectual disabilities on several sexuality-related topics. Semi-structured interviews were held with 20 people with intellectual disabilities covering topics such as: sex education, relationships, sex, social media, parenthood and support. The reported frequency of sex education the participants receive is low. Their knowledge regarding sex education is mainly limited to topics such as safe sex, contraception and STI’s and tends to be superficial. Additionally, knowledge on safe sex does not always translate to safe sex behaviour. Finally, relationships are important for most participants; mainly because they don’t want to be alone. Findings from both this study and literature shows that there seems to be a need for high quality sex education. Topics to consider to include are: online relationships, social media and parenthood. It would also be beneficial to focus on sexuality-related skills. Finally, to increase the effectiveness of a sex education programme, it is advisable that a theory-and evidence-based framework, such as Intervention Mapping, is used for its development.

Understanding the role played by parents, culture and the school curriculum in socializing young women on sexual health issues in rural South African communities

Abstract Background: the decline in South Africa’s HIV infection rates especially among young women is encouraging. However, studies show that the 15–24-year-old cohort remains vulnerable. As they still report early sexual debut, being involved in sexual partnerships with older men as well as having unprotected sex. These risky sexual behaviors may be linked to factors such as the parent–child sexual health communication and the timing of the first talk. The quality of sexual health information received in school may also be important for enhancing healthier sexual behaviors. Aims and Objectives: to investigate the what, when and how sexual health communication occurs in rural South African families and to determine whether such communication patterns have changed over time. We also wanted to get an in-depth understanding of the roles played by culture, sexual health education and peers in the socialization of young women on sexual matters. Methods: a purposive sample of (n = 55) women who were 18–35 years old was selected and interviewed in focus group discussions (FGDs). Results: the FGD findings show that parent–child communication on sexual matters in rural communities is limited to messages that warn against pregnancy. It is also laden with cultural idioms that are not well explained. The school sexual health curriculum also fails to adequately equip adolescents to make informed decisions regarding sexual matters. All this seems to leave room for reception of misguided information from peers. Conclusions: findings highlight a need for designing interventions that can create awareness for parents on the current developmental needs and sexual behavior of adolescents. For adolescents programs would need to focus on providing skills on personal responsibility, and how to change behavior to enhance sexual health.

Psychomotor therapy for anger and aggression in mild intellectual disability or borderline intellectual functioning: an Intervention Mapping approach

Abstract Difficulties with anger regulation in individuals with mild intellectual disability or borderline intellectual functioning (MID-BIF) are often associated with aggressive behaviour. Psychomotor therapy (PMT), a mind-body intervention often applied in Dutch facilities for this target group, uses body awareness and physical activities as a medium to learn how to gain control over one’s anger and reduce aggressive behaviour. With Intervention Mapping as a framework, 17 Dutch psychomotor therapists were asked to describe their PMT programme to investigate its content and coherence. Results suggested that interoceptive awareness (IA) and adaptive coping skills (ACS) are key elements of the PMT programmes. The theoretical basis of the PMT programmes is however limited and specific instruments for evaluating PMT are not available yet, especially for IA. Psychomotor therapists would gain from a well-described PMT programme. Future research is warranted on IA, and specific instruments need to be developed and validated for this target group.

Sexuality and individual support plans for people with intellectual disabilities

BACKGROUND Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents. METHOD Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed. RESULTS A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents. CONCLUSIONS Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.

Assessing the quality of existing sex education programmes for people with intellectual disabilities : An intervention mapping approach

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

People with intellectual disabilities talk about sexuality : important implications for the development of sex

Special Issue: Abstracts of the Fourth International IASSIDD Europe Regional Congress 14-17 July, 2014, Vienna Symposium 2.1. Sexuality and People with IDD - 1

Sexuality and privacy among people with an intellectual disability : a qualitative study

Special Issue: Abstracts of the Fourth International IASSIDD Europe Regional Congress 14-17 July, 2014, Vienna Symposium 2.1. Sexuality and People with IDD - 1