Ian Mansell

‘I’m a researcher!’ Working together to gain ethical approval for a participatory research study

‘I’m a researcher!’ These were the words used by one member of our research team when we left a meeting of our Local Research Ethics Committee having been granted approval for our research study. This participatory study aims to ask people with intellectual disabilities1 what they think about health and what helps them to be healthy. However, it also aims to enable people with intellectual disabilities to develop their skills as researchers. We felt that we had learnt a lot from the process of gaining ethical committee approval and, since ethical committee approval is something which many participatory studies may need to secure, we thought that our experiences would help other people both nationally and internationally who are planning to undertake similar work. We therefore decided to write this article.

‘It terrifies me, the thought of the future’: listening to the current concerns of informal carers of people with a learning disability:

The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on ‘current concerns’. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.

Current perceptions of respite care: experiences of family and informal carers of people with a learning disability

Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.

Evidencing good practice in adult protection: informing the protection of people with learning disabilities from abuse

The importance and challenges in providing a good practice evidence base for adult protection are outlined. The literature search, review and mapping exercise that formed part of the Abuse of Adults with Learning Disabilities: Policy, Practice and Educational Implications in Wales research study is detailed. The article presents examples from this evidence mapping exercise and considers the importance of adult protection research to the future development of policy and practice.

Social Policy and People with Intellectual Disabilities in Poland Enhancing quality of life

The past decade has been a time of great political, social and economic change within Poland. Such changes have affected the lives of all citizens including those with an intellectual disability. However, within the English language literature there is little published concerning the impact of changes in social policy on this group of people and the extent to which their quality of life has been enhanced. This article thus considers the difficult relationship between quality of life and social policy, provides an overview of key policy developments within Poland (both general and disability specific), and outlines some ways in which they have impacted on the lives of people with intellectual disabilities. It is suggested that further research is required before clear conclusions can be drawn. Areas for service development and research are thus proposed.

Responding to the abuse of people with learning disabilities: the role of the police

The abuse of people with learning disabilities is a significant problem. The response of the police to abuse that is actually a criminal offence is paramount. This paper reports on a qualitative study into the attitudes and opinions of police officers involved in abuse investigations. The aims were to understand more about the perceptions that police have about their role, the contribution made by the police to the area and to identify good practice where it occurs. Semistructured interviews and focus groups were conducted with police officers regarding their experiences of involvement in vulnerable adult protection and views on the role of the police. Findings are presented according to key themes: structure for abuse work, joint investigator training, understanding the needs of people with learning disabilities, the legislative context for abuse work and sharing good practice and striving for a consistent response. Demand is growing for the police to respond to the abuse of people with learning disabilities in a way that is both appropriate and maximises the likelihood of victims receiving justice.