Meeting in the middle: Improving communication in primary health care consultations with people with an intellectual disability

The increased presence and participation in Australian society of people with an intellectual disability provides challenges for the provision of primary health care. General practitioners (GPs) identify themselves as ill equipped to provide for this heterogeneous population. A major obstacle to the provision of appropriate health care is seen as inadequate communication between the GP and the person with an intellectual disability, who may or may not be accompanied by a carer or advocate. This qualitative study in which five GPs, three people with intellectual disability, seven carers and two advocates (parent and friend) were interviewed was conducted in Brisbane, Australia. The aim was to better understand the factors that have an impact upon the success of communication in a medical consultation. Findings suggested that GPs were concerned with the aspects of communication difficulties which influenced their ability to adequately diagnose, manage and inform patients. Implications for practice management were also identified. People with intellectual disability reported frustration when they felt that they could not communicate adequately with the GP and annoyance when they were not included in the communication exchange. Carers were strong advocates for the person with intellectual disability, but indicated insufficient skill and knowledge to provide the level of assistance required in the consultation. The outcome was a model of cooperation that outlined the responsibilities of all players in the medical encounter, prior to, during and after the event.

Implications of social capital for the inclusion of people with disabilities and families in community life

This paper seeks to ascertain the usefulness of the theory of social capital as a framework for developing and sustaining the inclusion of people with disabilities and families in community life. We discuss the theoretical elements of social capital and assess its relevance when understanding both the experiences of people with disabilities and their families and the possible implications for policy and programme efforts to promote inclusion. Preliminary findings from two studies of the experiences and social networks of people with disabilities and their families in communities in regional and rural Australia are presented. It is argued that to date, people with disabilities and their families have largely been excluded from the broader social capital debate and that social capital thinking has had minimal influence on efforts to achieve the inclusion of people with disabilities into community life. It is further argued that new paradigms of support are needed that build capacity and social capital through working alongside individuals and families to influence not only outcomes for them, but also for the communities on which they live. The local area coordination model as it has developed in Australia since 1989 provides some instructive signposts for integrating individual, family and community approaches. It is concluded that social capital theory can make a contribution to inclusion theory and practice but we should use it with circumspection.

Specialised supported education for Australians with psychotic disorders

Australia has a network of Federally funded disability employment and vocational rehabilitation services, including a proportion of outlets that specialise in providing services for persons with psychiatric disabilities. However, neither Federal nor State Governments currently provide or fund disability-specific education assistance to persons with psychiatric disabilities. To begin considering whether Specialised Supported Education is indicated for persons with psychotic disorders, we examined data collected in a national 'Survey of Disability, Ageing and Carers Australia, 1998'. International studies of the effectiveness of overseas Supported Education programs were also examined to identify the forms of assistance most likely to warrant consideration in Australia. U.S.A. evidence indicates that Specialised Supported Education is emerging as an effective career development option for persons with psychotic disorders. An example of an innovative Specialised Supported Education program is provided to illustrate how this type of program can be implemented in Australia.

Validity of accelerometry for measurement of activity in people with brain injury

Purpose: To evaluate the validity of a uniaxial accelerometer (MTI Actigraph) for measuring physical activity in people with acquired brain injury (ABI) using portable indirect calorimetry (Cosmed K4b(2)) as a criterion measure. Methods: Fourteen people with ABI and related gait pattern impairment (age 32 +/- 8 yr) wore an MTI Actigraph that measured activity (counts(.)min-(1)) and a Cosmed K4b(2) that measured oxygen consumption (mL(.)kg(-1.)min(-1)) during four activities: quiet sitting (QS) and comfortable paced (CP), brisk paced (BP), and fast paced (FP) walking. MET levels were predicted from Actigraph counts using a published equation and compared with Cosmed measures. Predicted METs for each of the 56 activity bouts (14 participants X 4 bouts) were classified (light, moderate, vigorous, or very vigorous intensity) and compared with Cosmed-based classifications. Results: Repeated-measures ANOVA indicated that walking condition intensities were significantly different (P < 0.05) and the Actigraph detected the differences. Overall correlation between measured and predicted METs was positive, moderate, and significant (r = 0.74). Mean predicted METs were not significantly different from measured for CP and BP, but for FP walking, predicted METs were significantly less than measured (P < 0.05). The Actigraph correctly classified intensity for 76.8% of all activity bouts and 91.5% of light- and moderate-intensity bouts. Conclusions: Actigraph counts provide a valid index of activity across the intensities investigated in this study. For light to moderate activity, Actigraph-based estimates of METs are acceptable for group-level analysis and are a valid means of classifying activity intensity. The Actigraph significantly underestimated higher intensity activity, although, in practice, this limitation will have minimal impact on activity measurement of most community-dwelling people with ABI.

Early practical experience and the social responsiveness of clinical education: Systematic review

Objectives To find how early experience in clinical and community settings (early experience) affects medical education, and identify strengths and limitations of the available evidence. Design A systematic review rating, by consensus, the strength and importance of outcomes reported in the decade 1992-2001. Data sources Bibliographical databases and journals were searched for publications on the topic, reviewed under the auspices of the recently formed Best Evidence Medical Education (BEME) collaboration. Selection of studies All empirical studies (verifiable, observational data) were included, whatever their design, method, or language of publication. Results Early experience was most commonly provided in community settings, aiming to recruit primary care practitioners for underserved populations. It increased the popularity of primary care residencies, albeit among self selected students. It fostered self awareness and empathic attitudes towards ill people, boosted students' confidence, motivated them, gave them satisfaction, and helped them develop a professional identity. By helping develop interpersonal skills, it made entering clerkships a less stressful experience. Early experience helped students learn about professional roles and responsibilities, healthcare systems, and health needs of a population. It made biomedical, behavioural, and social sciences more relevant and easier to learn. It motivated and rewarded teachers and patients and enriched curriculums. In some countries,junior students provided preventive health care directly to underserved populations. Conclusion Early experience helps medical students learn, helps them develop appropriate attitudes towards their studies and future practice, and orientates medical curriculums towards society's needs. Experimental evidence of its benefit is unlikely to be forthcoming and yet more medical schools are likely to provide it. Effort could usefully be concentrated on evaluating the methods and outcomes of early experience provided within non-experimental research designs, and using that evaluation to improve the quality of curriculums.

Widespread brain activity during an abdominal task markedly reduced after pain physiology education: fMRI evaluation of a single patient with chronic low back pain

The way people with chronic low back pain think about pain can affect the way they move. This case report concerns a patient with chronic disabling low back pain who underwent functional magnetic resonance imaging scans during performance of a voluntary trunk muscle task under three conditions: directly after training in the task and, after one week of practice, before and after a 2.5 hour pain physiology education session. Before education there was widespread brain activity during performance of the task, including activity in cortical regions known to be involved in pain, although the task was not painful. After education widespread activity was absent so that there was no brain activation outside of the primary somatosensory cortex. The results suggest that pain physiology education markedly altered brain activity during performance of the task. The data offer a possible mechanism for difficulty in acquisition of trunk muscle training in people with pain and suggest that the change in activity associated with education may reflect reduced threat value of the task.

Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory

The main objective of this study was to describe the outcomes of a communication education program for older people with hearing impairment using the International Outcome Inventory - Alternative Interventions (IOI-AI) and the version for significant others (IOI-AI-SO). Ninety-six people aged 58 to 94 years participated in an interactive group education program for two hours per week for five weeks. The IOI-AI was administered at one to two weeks after the last educational session and 29 significant others also completed the IOI-Al-SO at this time. Overall, positive results were obtained using both questionnaires, and satisfaction with the program was particularly high. Findings also compared favourably to reports of outcomes for other audiological interventions (i.e., another communication training program and hearing aid fitting). Principal components analysis of the IOI-AI revealed a somewhat different factor structure than the original IOI-HA. The two versions of the 101 applied in this study are recommended as simple and effective measures of the outcomes of alternative interventions.

Quantifying aphasic people's social lives in the context of non-aphasic peers

Background: Developing the knowledge base on the impact of aphasia on people's social lives has become increasingly important in recent times to further our understanding of the broad consequences of communication disability and thus provide appropriate services. Past research clearly indicates that relationships and social activities with family members and others undergo change with the onset of aphasia in an individual, however more evidence of a quantitative nature would be beneficial. Aims: The current research furthers our knowledge by quantifying chronically aphasic older people's regular social contacts and social activities, and places them in context by comparing them with healthy older people of similar age and education. Methods & Procedures: A total of 30 aphasic participants aged 57 to 88 years, and 71 non-aphasic controls aged 62 to 98 years were interviewed by a speech and language therapist using self-report measures of Social Network Analysis (Antonucci & Akiyama, 1987) and Social Activities Checklist (Cruice, 2001, in Worrall & Hickson, 2003). Demographic information was also collected. Descriptive statistics are presented and independent samples t tests were used to examine differences between the groups. Outcomes & Results: Participants with primarily mild to moderate aphasic impairment reported a considerable range of social contacts (5-51) and social activities (8-18). Many significant differences were evident between the two groups' social contacts and activities. On average, aphasic participants had nine fewer social contacts (mainly friend'' relationships) and three fewer social activities (mainly leisure'' activities) than their non-aphasic peers. The majority of controls were satisfied with their social activities, whereas the majority of aphasic participants were not and wanted to be doing more. There were some general similarities between the groups, in terms of range of social contacts, overall pattern of social relationships, and core social activities. Conclusions: Older people with chronic aphasia had significantly fewer social contacts and social activities than their peers. People with aphasia expressed a desire to increase the social activity of their lives. Given the importance of leisure activity and relationships with friends as well as family for positive well-being, speech and language therapists may direct their rehabilitation efforts towards two areas: (1) conversational partner programmes training friends to maintain these relationships; and (2) encouraging and supporting aphasic clients in leisure activities of their choice.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.