Evaluating the role of speech-language pathology with patients with communication disability in the acute hospital setting using the ICF

The practice of speech-language pathology in the acute care hospital setting has changed dramatically over the last 20 years. Speech-language pathologists now routinely assess and manage patients with dysphagia as well as patients with acquired communication disorders. In practice, clinicians have tended to direct their limited resources toward the assessment and management of patients with dysphagia before addressing the needs of patients with acquired communication disorders. This practice has resulted in a decline in speech-language pathology services for patients with communication disorders and has led some clinicians to question the role of the speech-language pathologist in the acute care hospital setting. This article continues this discussion by evaluating the role of the speech-language pathologist in the acute care hospital setting within the context of the World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF; WHO, 2001). It argues that by adopting the ICF, speech-language pathologists have a sound rationale for broadening their role to identify the communication needs of all hospital inpatients who experience communication difficulties in the acute care hospital setting.

The Multi-Faceted Experience of Empathy in Intellectual Disability Settings: An IPA Study

This research thesis explored the concept of empathy. The specific purpose was to further understand the idea of empathy in relation to the experience of male support workers who provide residential care to adults with intellectual disabilities (ID) and challenging behaviour. The thesis aimed to provide some insights into how support workers develop and extract meaning from their experiences of relationships with clients and the impact of this on their own self-care, namely, self-compassion. Since personal accounts of experience were required, a qualitative methodology was employed, Interpretative Phenomenological Analysis (IPA) (Smith, 2004). This methodology was selected as it allows for the exploration and interpretation of idiographic lived experience and meaning making. 8 experienced support workers were interviewed using a semi structured interview. Four superordinate themes emerged from the data. These included: 1. Making sense of the others inner world; 2. Processes that enhance empathic practice; 3. Tensions and conflicts, and 4. Management of distressing feelings. Differing accounts of interpreting the needs of clients were identified which helped participants understand, make sense of their interpersonal experience and participate in their role. These included utilising academic knowledge and senses, particularly sight and hearing, which were seemingly complemented by a level of reflective practice. Additionally, to make sense of the experience of a client, they appeared to put themselves in their position, suggesting a form of empathy. Participants appeared to engage in a process of reflection on their relationships with clients, which helped them think about what they had learned about the person’s needs, moreover, this process enabled them to identify some of their own responses and feelings. However, participants seemed to struggle to recognise the occurrence or impact of distressing emotional experience and to express their feelings, possibly in response to a deep sense of responsibility and fear of transferring emotional distress to others. This dilemma of holding two potentially conflicting views of experience seemed to inhibit self-compassion. Although not specifically testing theories of empathy, from the overall findings, it could be suggested that empathy may be a dynamic, transient process that is influenced by reflexivity, values and context. The context in which participants discussed their practice, and situated within their accounts, suggested a sense of confusion and uncertainty. Consequently, it is suggested this impacted on how participants understood and related to clients, and to themselves. There were some specific implications for Counselling Psychology practice, mostly concerning training and supervision. These included recommendations for staff training and supervision, systemic organisational intervention, policy development, recommendations for revisions to models of specialist care frameworks and clinical training.

Mutations in SNX14 cause a distinctive autosomal-recessive cerebellar ataxia and intellectual disability syndrome

Intellectual disability and cerebellar atrophy occur together in a large number of genetic conditions and are frequently associated with microcephaly and/or epilepsy. Here we report the identification of causal mutations in Sorting Nexin 14 (SNX14) found in seven affected individuals from three unrelated consanguineous families who presented with recessively inherited moderate-severe intellectual disability, cerebellar ataxia, early-onset cerebellar atrophy, sensorineural hearing loss, and the distinctive association of progressively coarsening facial features, relative macrocephaly, and the absence of seizures. We used homozygosity mapping and whole-exome sequencing to identify a homozygous nonsense mutation and an in-frame multiexon deletion in two families. A homozygous splice site mutation was identified by Sanger sequencing of SNX14 in a third family, selected purely by phenotypic similarity. This discovery confirms that these characteristic features represent a distinct and recognizable syndrome. SNX14 encodes a cellular protein containing Phox (PX) and regulator of G protein signaling (RGS) domains. Weighted gene coexpression network analysis predicts that SNX14 is highly coexpressed with genes involved in cellular protein metabolism and vesicle-mediated transport. All three mutations either directly affected the PX domain or diminished SNX14 levels, implicating a loss of normal cellular function. This manifested as increased cytoplasmic vacuolation as observed in cultured fibroblasts. Our findings indicate an essential role for SNX14 in neural development and function, particularly in development and maturation of the cerebellum.

Population outcomes of three approaches to detection of congenital hearing loss

BACKGROUND: Universal newborn hearing screening was implemented worldwide largely on modeled, not measured, long-term benefits. Comparative quantification of population benefits would justify its high cost.

METHODS: Natural experiment comparing 3 population approaches to detecting bilateral congenital hearing loss (>25 dB, better ear) in Australian states with similar demographics and services: (1) universal newborn hearing screening, New South Wales 2003-2005, n = 69; (2) Risk factor screening (neonatal intensive care screening + universal risk factor referral), Victoria 2003-2005, n = 65; and (3) largely opportunistic detection, Victoria 1991-1993, n = 86. Children in (1) and (2) were followed at age 5 to 6 years and in (3) at 7 to 8 years. Outcomes were compared between states using adjusted linear regression.

RESULTS: Children were diagnosed younger with universal than risk factor screening (adjusted mean difference -8.0 months, 95% confidence interval -12.3 to -3.7). For children without intellectual disability, moving from opportunistic to risk factor to universal screening incrementally improved age of diagnosis (22.5 vs 16.2 vs 8.1 months, P < .001), receptive (81.8 vs 83.0 vs 88.9, P = .05) and expressive (74.9 vs 80.7 vs 89.3, P < .001) language and receptive vocabulary (79.4 vs 83.8 vs 91.5, P < .001); these nonetheless remained well short of cognition (mean 103.4, SD 15.2). Behavior and health-related quality of life were unaffected.

CONCLUSIONS: With new randomized trials unlikely, this may represent the most definitive population-based evidence supporting universal newborn hearing screening. Although outperforming risk factor screening, school entry language still lagged cognitive abilities by nearly a SD. Prompt intervention and efficacy research are needed for children to reach their potential.

Feminist Disability Theory: Domestic Violence Against Women with a Disability

Women with a disability continue to experience social oppression and domestic violence as a consequence of gender and disability dimensions. Current explanations of domestic violence and disability inadequately explain several features that lead women who have a disability to experience violent situations. This article incorporates both disability and material feminist theory as an alternative explanation to the dominant approaches (psychological and sociological traditions) of conceptualising domestic violence. This paper is informed by a study which was concerned with examining the nature and perceptions of violence against women with a physical impairment. The emerging analytical framework integrating material feminist interpretations and disability theory provided a basis for exploring gender and disability dimensions. Insight was also provided by the women who identified as having a disability in the study and who explained domestic violence in terms of a gendered and disabling experience. The article argues that material feminist interpretations and disability theory, with their emphasis on gender relations, disablism and poverty, should be used as an alternative tool for exploring the nature and consequences of violence against women with a disability.

Poor functional health literacy : the silent disability for older people

In this information age, people are confronted by verbal, visual and written information. This is especially important in the health field, where information is needed to follow directions, understand prescriptions and undertake preventive behaviours. If provided in written form, much of this information may be inaccessible to people who cannot adequately read. Although poor literacy skills affect all groups in the population, older adults with fewer years of education seem to be particularly disadvantaged by an increasing reliance on written communication of health information. With older age comes a higher risk of illness and disability and a greater potential need to access the health system. As a result, poor literacy skills of older individuals may directly impact their health status. This paper explores the link between functional literacy and health, particularly for the older population, provides strategies to practitioners for the management of this problem, and suggests research initiatives in this area.

Grandparenting a child with a disability: An emotional rollercoaster.

Objectives: As our knowledge about the experiences of grandparents when their grandchild has a disability is extremely limited, the purpose of this research was to explore the emotional journey of Australian grandparents. Method: This qualitative research utilised purposive sampling and semi-structured in-depth interviews to explore the experiences of 22 Australian grandparents, whose grandchild had been diagnosed with a disability. Results: Three key themes characterised grandparent’s emotional journey: Adjusting (the transition from anger to acceptance), The ‘Double Grief’ (sadness about what might have been for both their child and grandchild) and Pride in Family (pride in family’s ability to adjust to the challenges of the situation). Conclusion: As the first Australian study to explore the experiences of grandparents when their grandchild has a disability, the research provides important new knowledge about the emotional journey for grandparents. Unlike overseas research, Australian grandparents view themselves as being there to support their own children, rather than ‘holding the family together’. The findings will inform current policy debates about the role of grandparents and highlight the importance of support services that help facilitate grandparent’s role within their family

Social adaptation of children with mild intellectual disability : effects of partial integration within primary school classes

Examined the social adaptation of 32 children in grades 3–6 with mild intellectual disability: 13 Ss were partially integrated into regular primary school classes and 19 Ss were full-time in separate classes. Sociometric status was assessed using best friend and play rating measures. Consistent with previous research, children with intellectual disability were less socially accepted than were a matched group of 32 children with no learning disabilities. Children in partially integrated classes received more play nominations than those in separate classes, but had no greater acceptance as a best friend. On teachers' reports, disabled children had higher levels of inappropriate social behaviours, but there was no significant difference in appropriate behaviours. Self-assessments by integrated children were more negative than those by children in separate classes, and their peer-relationship satisfaction was lower. Ratings by disabled children of their satisfaction with peer relationships were associated with ratings of appropriate social skills by themselves and their teachers, and with self-ratings of negative behaviour. The study confirmed that partial integration can have negative consequences for children with an intellectual disability.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Duplicity/complicity : misperforming the social drama of disability

In this paper, I investigate the (mis)performance of ‘passing’ in the context of bodies with disabilities. The desire to conceal, control or contain a body’s idiosyncrasies can be a deceitful act, complicit with dominant cultural assumptions about the benefits of fitting in. Passing, and the performative tricks, techniques and prostheses that support the ‘lie’ of passing, upholding a social contract in which a closeting-as-cure approach accommodates discomfort with difference. In this paper, I consider moments of non-passing, where people are caught out by mistakes or deliberate misperformances of the daily social drama of ability and disability. I reference the work of disabled artists Bill Shannon, Aaron Williamson and Katherine Araniello, who re-perform their daily personal interactions in the public sphere as a sort of guerilla theatre. Their work brings hidden assumptions about how disabled people should act and interact to the brink of visibility. It challenges passers-by to confront their complicity in these discourses by pressing them to re-perform their own spontaneous reactions to bodies that misperform the ‘lie’ of normalcy.

Intellectual disability and sexuality : attitudes of disability support staff and leisure industry employees

Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. ----- Method: A sample of 169 disability support staff and 50 employees from leisure and services industries completed the Attitudes to Sexuality Questionnaires (Individuals with an Intellectual Disability [ASQ–ID], and Individuals from the General Population [ASQ–GP]). ----- Results: Support staff and leisure workers reported generally positive attitudes towards the sexuality of individuals with an ID, but men were seen as having less self-control than women. Support staff were more cautious in their views about parenting, and both groups considered a lower level of sexual freedom to be desirable for women with an ID compared to women who are developing typically. Conclusions Attitudes of both groups are generally quite positive in relation to ID and sexuality.