A practical example of an open disclosure process for people with intellectual disabilities in the Republic of Ireland.

Literature pertaining to open disclosure predominantly refers to acute care settings; this is the case in, for example, the UK, Republic of Ireland, Australia, Korea and the USA. There is, however, a dearth of literature regarding open disclosure related to people with intellectual disabilities. A practice example of open disclosure is presented here, following a serious adverse event in an organisation supporting adults with intellectual disabilities. The aim of the process was to openly disclose in a meaningful way to adults with significant intellectual disabilities and communication difficulties. An apology pathway was developed by a multidisciplinary team based on individual communication needs. A suite of resources was developed including easy read-picture agendas and sign language to support increased understanding of the apology. Service users received the apology first, followed by meetings with their families. This practice example has positive implications for service providers for people with intellectual disabilities.

The lived experience of people with intellectual disabilities in post-secondary or higher education.

The transformational role education plays in the lives of people with intellectual disabilities has not been fully examined. The purpose of this study was to explore and investigate the meanings people with intellectual disabilities construct of their experiences in post-secondary and higher education. Heideggerian hermeneutic phenomenology was the qualitative methodology adopted for the study. Individual interviews were conducted with 27 people with intellectual disabilities and analysed in stages. These stages included the creation of I-Poems offering a unique opportunity for individual participant voices to be heard. Three core themes emerged to describe living an authentic life: learning (with the emphasis on increased skills, independence and opportunities); relationships (in particular, the importance of friendships), and perceptions including the existing realities of life for those with intellectual disabilities. The findings advance previous work highlighting the link between living a more authentic life and how education transforms how people with intellectual disabilities view themselves.

Researchers' experiences and lessons learned from doing mixed-methods research with a population with intellectual disabilities: Insights from the SOPHIE study.

Researchers are challenged to provide opportunities for people with intellectual disabilities (IDs) and their families to become participants in research. This article explores the processes and procedures involved in conducting a mixed-methods study. The preparation for the study is described and explained. Recruitment is examined by describing the process and analysing phone calls made to potential participants. Reflections of research team members help to develop the analysis and contribute to a discussion of the fieldwork. Lessons learned show that research projects involving people with IDs and their families need careful planning and have additional costs. The research team requires a mix of expertise. Traditional recruitment methods may not be suitable, and researchers need to build good relationships with gatekeepers so that participants can be contacted directly. Good quality research with people with IDs and their families is possible once suitable strategies are employed throughout the research process.

Meeting the challenge of interpretation: Hearing the voices of people with intellectual and developmental disability through I-Poems.

Including the inner perspectives of people who have intellectual disability can pose methodological challenges to qualitative researchers. This article explains how the Listening Guide was applied as an additional step in the analysis during a study which used hermeneutic interviews with people with intellectual disability as the sole method of data collection. An argument is made for the systematic application of the guide with a focus on the use of I-Poems. This article advances qualitative methodological approaches and concludes that this method of drawing attention to the participants' own voices provides a unique basis for interpreting interviews and tasks researchers to examine the use of the Listening Guide.

An examination of the nutritional intake and anthropometric status of individuals with intellectual disabilities: Results from the SOPHIE study.

The prevalence of obesity appears greater in people with intellectual disabilities than those in the general population. This study aimed to examine the nutritional intake and anthropometric status of individuals with intellectual disabilities. Participants aged 16-64 years were recruited from intellectual disability service provider organizations ( n = 131). Data were collected using questionnaires; 4-day food dairies and weight, height and waist circumference measurements. Participants' mean body mass index (BMI) was 29.4 kg/m2 ± 6.1, 2.4% were underweight, 22.6% were normal weight, 28.2% were overweight and 46.8% were obese. Having a diagnosis of Down syndrome ( p = 0.03) was associated with increasing BMI. Increasing waist circumference was associated with increasing severity of ID ( p = 0.04). The mean-reported energy intake was 1890 kcal/day. Mean energy intakes from sugar, fat and saturated fat were above recommendations and few participants met micronutrient recommended daily amounts. This study highlights the alarming prevalence of overweight and obesity and poor diet quality of individuals with intellectual disabilities.

People with intellectual disability and human science research: A systematic review of phenomenological studies using interviews for data collection.

This paper presents the findings from a systematic review which investigated the use of phenomenological research interviews in studies involving people with intellectual disability. A search of four electronic databases and the subsequent application of inclusion criteria resulted in 28 relevant publications. Selected articles were reviewed and key data extracted using CASP guidelines, with findings presented by examining the influencing philosophy or theory, the method of recruitment and data collection, the relationship between researcher and participants, the rigour of data analysis and finally a statement of findings. The results show people with mild and moderate intellectual disability, included as participants in phenomenological research investigating a range of issues that are important in their lives. A critical discussion focuses on the main characteristics of phenomenology and points to implications for further research. Creating awareness of research among people with intellectual disability is important, and finding the best way to ensure findings are disseminated in accessible formats is recommended. Researchers are also challenged to consider Heideggerian hermeneutic phenomenology as a method with the potential to fully explore the experiences of people with intellectual disability.