Stakeholder expectations, roles and responsibilities in Dutch health promotion for people with intellectual disabilities.

This two-phase, qualitative study aims to obtain an overview of stakeholders in the network of people with intellectual disabilities (ID) and their perceived facilitating and hindering factors, expectations, and perceived roles and responsibilities with regard to health promotion. In phase 1, four workshops were conducted to provide insight into involved stakeholders. In phase 2, 29 semi-structured interviews were conducted with stakeholders regarding their views on health promotion. Data were analysed using stakeholder matrices and a combination of domain and thematic analysis. Daily caregivers were identified as the most important and influential stakeholders. Interviewed stakeholders perceived barriers to a healthy lifestyle as relating mainly to the person with ID and, although they stated that people with ID need support to be able to live healthily, there was ambiguity about roles and responsibilities for providing this support. Daily caregivers are not properly facilitated to support a healthy lifestyle. Stakeholders expressed the need for a culture change towards a greater health promotion ethos in care for people with ID. A facilitating context is needed in which the social network supports autonomy and offers opportunities to adapt to physical, social and emotional challenges. Stakeholders see the importance of, and are willing to support, healthy behaviour. They are hindered by a lack of a shared vision and united system in which all stakeholders know their roles and responsibilities. Promotion of a healthy lifestyle should be part of every service provider employee's job and propagated throughout the organization as part of its mission and vision.

Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives.

BACKGROUND: A healthy lifestyle can prevent several health problems experienced by adults with intellectual disabilities (ID). For the development of effective and usable health promoting interventions for people with ID, the perspective of the intended audience should be taken into account. The aim of this qualitative study was to gain insight into the perspectives of people with mild to moderate ID on healthy living. METHOD: Qualitative study. Five semi-structured focus groups were conducted with a total of 21 adults with mild to moderate ID in the Netherlands. Discussions focused on three main themes: (1) perceptions of own health, (2) what participants consider as healthy living and (3) factors experienced to be related to the ability to live healthily. Interviews were analysed thematically resulting in two main domains: (1) perceptions of what is healthy and unhealthy and (2) factors that participants experience to be related to their ability to live healthily. RESULTS: For participants, healthy living entails more than healthy food and exercising: feeling healthy, happiness and level of independence are perceived as important as well. Factors experienced to relate to their ability to live healthily were (a lack of) motivation, support from others and environmental factors such as available health education, (a lack of) facilities and a(n) (dis)advantageous location of work or residence. CONCLUSIONS: This qualitative study shows that adults with mild to moderate ID have a good understanding of what being healthy and living healthily constitute. As they face several difficulties in their attempts to live healthily, existing health promotion programmes for people with ID must be tailored to individual preferences and motivations and adapted for individual physical disabilities. Moreover, because of their dependency on others, tailoring should also be focused on the resources and hindering factors in their physical and social environment.