Colin Griffiths

Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners.

BACKGROUND People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. MATERIALS AND METHODS In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. RESULTS Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. CONCLUSION Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners.

An evaluation of a community living initiative in Ireland

One of the central principles underpinning Irish intellectual disability policy is that of decongregation. Allied to this is the belief that life in community settings offers greater opportunities and richer experiences than does life in institutional settings. This study explores the experiences of a group of adults with intellectual disabilities who moved from residential settings to living units in the community. Using a qualitative descriptive approach, it considers the significance of that move for them and seeks to understand the extent to which their lives have changed. Whereas it emerges that this was a positive period in their lives, it is clear that a number of issues remain to be addressed and these provide useful information for similar developments in the future.

You and me: The structural basis for the interaction of people with severe and profound intellectual disability and others

Interaction between two people may be construed as a continuous process of perception and action within the dyad. A theoretical framework is proposed in this article that explains the concepts and processes which comprise the interaction process. The article explores the transactional nature of interaction, through analysis of narrative data from two dyads, each comprising a person with severe or profound intellectual and multiple disability and a service worker. The novel application of grounded theory to analyse video data of non-verbal communication data in order to develop the theoretical framework is reviewed. Previously, attuning has been identified as the key process that drives interaction. This article explores the other concepts of the theory proposed, namely, setting, being, stimulus, action, attention and engagement. The article concludes by contrasting this theory of the interaction process with other related concepts and suggests how application of the proposed framework may enhance practice.

Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Abstract Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.

Small is Insightful: A Method for the Microanalysis of Behaviour andCommunication

The purpose of this article is to describe a method of examining observational data that is obtained through video recording, which allows for the identification of precise micro behaviors. The article describes the use of video as a data gathering tool, the associated transcription of the data into narrative format and the analytic method. Both verbal and non-verbal micro data were obtained and the capturing and analysis of both are discussed in detail. The data was composed of micro-behaviors and micro-communications of two communication dyads both of which consisted of one person with profound intellectual and multiple disability and one non-disabled teacher or nurse. Classic Glaserian grounded theory was used to analyse the narrative data. The method enabled the identification of behaviors of the participants, their communications, the sequences in which they occurred and the interrelationships at a micro level. Taken as a whole the method can reveal previously hidden information about what individuals do and how they behave in dyads and in groups and this has applications in nursing, special needs education and other fields in which human interaction is paramount.

The impact of four family support programmes for people with a disability in Ireland.

Background: This article reports on an evaluation of four family support programmes in Ireland for families of people with a physical or an intellectual disability or autism. The focus of the evaluation, which took place within a year of the programmes’ completion, was on establishing whether the programmes had an impact on families’ capacity to effectively support their family member. Method: A mixed-method design was used, which included a survey (n = 38) and interviews (n = 19) with participating family members. Ethical approval for the study was given by the relevant university ethics committee. Results: Findings suggest that participation in the programmes enhanced knowledge, attitudes, and competencies of families and also impacted their ability to advocate for their family member and to connect with the community. Discussion and conclusions: Whilst outcomes were overwhelmingly positive, further follow-up would be required to ascertain if sustained capacity building took place.

Pharmacological behaviour support for adults with intellectual disabilities: Frequency and predictors in a national cross-sectional survey

OBJECTIVE To report frequency and predictors of reported pharmacological behaviour support use among older adults with intellectual disabilities (ID) accessing dental care in Ireland. METHODS Data from a nationally representative cross-sectional survey of adults with ID over 40 years of age allowed identification of the reported frequency of pharmacological behaviour support use. Predictors of pharmacological support were identified using multiple logistic regression. RESULTS Most older adults with ID did not report the use of any pharmacological support to receive dental care: only 0.9% reported use of inhalation sedation; 2.4% intravenous (IV) sedation; 8.6% general anaesthesia (GA); and 16.0% oral sedation. Participants reporting challenging behaviour (OR = 1.9, 95% CI = 1.3-2.9), significant difficulty speaking (OR = 3.0, 95% CI = 1.8-4.8) and obvious oral problems (OR = 2.5, 95% CI = 1.6-4.1) had greater odds of reporting pharmacological, that is, GA or conscious sedation (CS), rather than nonpharmacological supports for dental care, compared to those who were not. CONCLUSIONS People with ID report a diverse range of support use, with many using GA or CS, particularly oral sedation, for dental treatment. This highlights a need for training and governance for dentists who provide this care. Patients who present with challenging behaviour, oral problems and, interestingly, difficulty with expressive communication are more likely to report use of pharmacological supports. The above has implications for dental service design and delivery for this population.

Communication-based behaviour support for adults with intellectual disabilities receiving dental care: A focus group study exploring dentists' decision-making and communication.

A better understanding of how communication-based behaviour supports are applied with adults with intellectual disabilities may reduce reliance on restrictive practices such as holding, sedation and anaesthesia in dentistry. In this study, we explore how communication is used by dentists who provide treatment for adults with intellectual disabilities. A descriptive qualitative study, adopting synchronous online focus groups, was undertaken with six expert dentists in Ireland. Members were contacted again in pairs or individually for further data collection, analysed using thematic content analysis. Two relevant categories emerged from the data, relating to the selection and application of communication-based behaviour support for adults with intellectual disabilities. Decision-making processes were explored. Building on these categories, a co-regulating process of communication emerged as the means by which dentists iteratively apply and adapt communicative strategies. This exploration revealed rationalist and intuitive decision-making. Implications for education, practice and research are identified.

The leisure experiences of university students with physical disabilities in Ireland

ABSTRACT Students with physical disabilities should have equal access to leisure activities as their peers without disabilities. The aim of this study was to explore the factors that influence the participation of university students with physical disabilities in leisure activities. This qualitative study, guided by the social model of disability, reported on findings from two focus groups: one with university staff members and one with students with physical disabilities. The results revealed that students with physical disabilities engaged in some leisure activities although they encountered environmental barriers that impeded participation. Staff members were conscious of the difficulties in creating a barrier-free environment for the participation of these students and were working on initiatives that would support the inclusion of students with disabilities in leisure activities on campus.