In a social and political climate which encourages active participation in decision-making by people who have severe and profound intellectual disabilities, the onus is often on practitioners, carers and advocates to represent the wishes and interests of individuals. The issue of the validity of their interpretations is then foregrounded. This paper discusses theoretical issues associated with the development of guidelines to support a process of validation. It is argued that meaning should be viewed as the negotiated outcome of interactions, always involving inference. Validity of interpretation is thus a continuous rather than a categorical variable, and needs to be supported by the systematic collection of evidence from a range of sources. This framework is compatible with a social constructivist view of communicative development, and allows for information derived from subjective, intuitive insights to be combined with information obtained through observation and testing.
Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect–reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism.
A small-scale study was conducted to investigate the extent to which the verbal communication skills used by adults with learning disabilities were complemented by those used by their keyworkers during communicative exchanges. The setting was a community-based day centre. The number of information carrying words (ICWs) used by keyworkers with their clients was measured in two contexts: (A) looking at selected pictures; (B) free conversational exchange. These were compared with the verbal comprehension level of each client, also measured in ICWs, as assessed by the administration of the Derbyshire Language Scheme: Rapid Screening Test of Comprehension (Knowles & Masidlover, 1982). The results revealed that major differences existed between the communication skills used by keyworkers, and the comprehension levels of the participants with learning disabilities under both conditions. The greater mismatch was evident in the second condition of 'free conversational exchange'. Some limitations of the current study are discussed together with the implications for future investigations and intervention.
Despite differences in the availability of communication skills, both student and teacher were able to make their respective contributions to the interaction during classroom activity. Features of the student-teacher interface retained critical features seen in studies of more able individuals with intellectual disability. Scaffolding provided by teachers appears to be relevant to the communicative contributions of individuals functioning at the earliest stages of communication. The coding framework based on structural-functional linguistics provides some new potential for examining and enhancing the communication interface between individuals with S-PMID and the people who support them.
Primary care depends on the effective communication between service user and practitioner. This study proposes that people with communication difficulties serve as a litmus test for whether practitioners are truly sensitised to the impact of their own communication skills. It is based on interviews with service users and carers. Three key themes emerged, namely inclusion, the process of communication, and continuity. Inclusion is concerned with effective participation in society in general and access to health care in particular. The communication process describes the way in which health issues are raised and addressed. Continuity refers to the way in which time interacts with the relationship between user and provider. The paper concludes that effective communication is not simply a set of taught behaviours but reflects a set of values that create the conditions for improving both communication and clinical outcomes.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.