Becoming the mother of a child with disabilities: a systematic literature review

The transition to motherhood starts early in pregnancy and is completed when the mother feels competent in caring for the infant. Becoming the mother of a child with disabilities is demanding as their needs are complex. The aim of the review was to appraise completed qualitative and quantitative reports on the challenges of mothers of children with disabilities regarding their own transition to motherhood. A review of the literature was carried out through, first, a computerized search strategy to identify relevant studies from selected databases and, second, quality appraisal and thematic analysis of selected studies. The transition to motherhood of children with disabilities takes place in the inside world at home, the outside world external to home and the ‘going-between’ world of travelling between the two worlds. The mothers are challenged at home to integrate basic infant care with technical care of their children. In the outside world they often struggled to ensure that their children got the necessary professional care. Travelling between their homes and healthcare services posed many problems.     

Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.     

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting.     

Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the neighbourhood. This literature study identifies five domains barriers and facilitators for social inclusion in the neighbourhood: individual characteristics, informal network, professional care, neighbourhood characteristics, and government policies. The findings suggest that social inclusion in the neighbourhood is a dynamic process that shows a series of complex interactions between environmental factors and personal characteristics to provide opportunities for people with an ID. It is recommended to include the perspectives of people with an ID and other neighbourhood residents in future research on social inclusion. Specific attention is needed for the role of neighbourhood social capital in achieving social inclusion in the neighbourhood.     

Everyday life of persons with intellectual disability living in residential settings: a systematic review of qualitative studies

This article presents a systematic review of studies published between November 2010 and November 2014 about the everyday life of adults with intellectual disability as viewed from their own perspective. Everyday life refers to an interdisciplinary concept including approaches attentive to the mundane and to ordinary routines of social relations and practices. Twelve studies met the inclusion criteria. The review was carried out as an interpretive synthesis. Findings from the included studies revealed neglect of participation regarding the wishes, self-determination, choice and control of persons with intellectual disability in their everyday lives. This neglect demonstrates the limitations persons with intellectual disability face as agents and adult citizens in their everyday life, and shows violation of fundamental human rights.