Journal of Intellectual Disabilities

Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of professionals. Semi-structured interviews were conducted with seven professionals and were analysed with thematic analysis. The overarching theme ‘sense of security’ was identified as a prerequisite for health promotion, together with the sub-themes ‘resources in the organisation’, for example, respectful treatment of the residents, and `resources of the residents', for example, meaningfulness and social connectedness. Findings were discussed from the perspective of health assets which is defined as the factors contributing to maintain and sustain health. The importance of strengthening external assets, that is, resources in the society and the organisation, to promote internal assets, that is, residents’ individual resources, and ultimately their health, is emphasised.

Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses’ experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working.

A structured literature search and thematic analysis of six research articles relating to stress and parenting of a child with an intellectual disability in the United Kingdom identified four key themes: impact upon families, service provision and support networks, coping and transition. The findings identified that parenting a child with an intellectual disability is not always a negative role; it is a role that parents find both rewarding and empowering. However, the findings of the literature review primarily related to mothers of children with an intellectual disability with very little focus on the experiences of fathers.

This article reports the actual participation in leisure activities by a sample of Norwegian adolescents with Down syndrome aged 14. Representing a first generation to grow up in a relatively inclusive context, they live with their families, attend mainstream schools, and are part of common community life. Leisure information was obtained in individual, structured parent interviews, and added to existing longitudinal data from a project following the sample. Generally, the leisure activity may be viewed as varying along a continuum—reaching from formal, organized, and assisted activity participation outside home, to informal, self-organized, and independent participation at home. Formal leisure activities were either organized “for all” or “adapted for disabled.” The adolescents’ leisure appears as active and social. However, social participation largely involved parents and family, while socializing with other adolescents mainly took place within formal activities adapted for disabled. Clearly, formal and informal activities provide rather different opportunities for social encounters and assistance.

This study investigated parent and teacher ratings of behavior problems in children with and without intellectual disabilities at three time points over the course of 9 years. The group of children with intellectual disabilities (IDs) had higher behavior problem ratings than the group of children with no IDs (NIDs) across the three time points. Parents and teachers generally agreed on behavior, with the exception of attention problems and externalizing problems. The ratings of problem behavior remained stable over the three time points. Our findings imply that children with ID may be more likely to be perceived as having greater externalizing behaviors by teachers than by parents and that parents may perceive children as having greater attention problems than teachers. For the majority of the subscales, the lack of differences between parent and teacher ratings over time implies relative stability of ratings over a 9-year period from young childhood through adolescence for individuals with and without ID.

Conducting qualitative research interviews among individuals with intellectual disabilities, including cognitive limitations and difficulties in communication, presents particular research challenges. One question is whether the difficulties that informants encounter affect interviews to such an extent that the validity of the results is weakened. This article focuses on voluntary informed consent and the specific challenges with the greatest effects on such interviews. The discussion shows that complementary and meaningful descriptions from informants imply the need to employ alternative strategies and methods that may, in other contexts, challenge the traditional understanding of what is acceptable in research.