Better Health, Better Lives? 10-Years on From the World Health Organization's Declaration on the Health of Children With Intellectual Disabilities.

It is now 10 years since the European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families: Better Health - Better Lives was adopted by the World Health Organization. Through discussions with key informants and an online literature review, we reflect on actions and progress made in line with this Declaration to improve the health and wellbeing of children with intellectual disabilities and their families. Despite finding positive examples of policy, legislation and practice in support of children with intellectual disabilities, there are clear gaps and areas for improvement. Countries must continue to take action, as supported by the World Health Organization and other such organisations, in order to support children with intellectual disabilities in realising their fundamental human rights.

Valproate prescribing practices for women with intellectual disability across Europe.

BACKGROUND: Valproate (VPA) is a known teratogen associated with greater risk of major congenital malformations and other neurodevelopmental sequelae than all other licensed antiepileptic medicines. To reduce the potential for VPA-related teratogenicity, the European Medicines Agency issued recommendations in 2018. Over two-thirds of women/girls with intellectual disability (ID) may have treatment-resistant epilepsy that could benefit from VPA treatment. AIMS: This investigation compared VPA prescribing practice for women/girls with ID between European countries, specifically evaluating the practice in the UK with that in other countries. METHODS: An expert working group with representation from key stake-holding organizations developed a survey for dissemination to relevant professionals across Europe. RESULTS: Seventy one responses were received (27 UK, 44 Europe). Clinicians in the UK were more likely to report that they are working to mandatory regulations compared with European respondents (P = .015). European respondents were less likely to be aware of user-independent contraception options (P = .06). In The UK, VPA regulations were more likely to be applied to women with ID than in Europe (P = .024). CONCLUSION: There is heterogeneity in the application of VPA regulations across Europe for women/girls with ID. In both the UK and Europe, the regulations lack suitable adjustments for specific ID-related factors.

The Relationship Between Spiritual Life and Quality of Life in People with Intellectual Disability and/or Low-Functioning Autism Spectrum Disorders.

Spirituality seems to represent a relevant domain in the person-centred care planning and outcome assessment for persons with intellectual disability and low-functioning autism spectrum disorder. Despite this, the impact of spirituality on subjective well-being and quality of life (QoL) has been scarcely investigated. The aim of the present study was to map the international scientific literature in order to identify the reasons of such misconsideration and the key points for future research and practice implementation. The relationship between spirituality and QoL depends on a complexity of factors, ranging from QoL theoretical models to services' organisation. Personal attitude, family members, health and social-care personnel, training, faith and life communities, and even different religions seem to deserve an in-depth analysis.

Health inequity in people with intellectual disabilities: from evidence to action applying an appreciative inquiry approach.

BACKGROUND: The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. MATERIALS AND METHODS: The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. RESULTS: A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support. CONCLUSION: Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.