Negotiated autonomy in diabetes self-management: the experiences of adults with intellectual disability and their support workers.

BACKGROUND: The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes. METHODS: Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 (N = 8) or type 2 (N = 6) diabetes and their support workers (N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis. RESULTS: The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy. CONCLUSIONS: The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy.

The feasibility and short-term benefits of Blue Prescription: a novel intervention to enable physical activity for people with multiple sclerosis.

PURPOSE: Participation in physical activity for people with Multiple sclerosis (MS) is important but can be difficult to sustain long-term. Facilitators for long-term adherence include choice over activity and control over level of engagement, coupled with support, advice and encouragement from a physiotherapist. This is the basis of Blue Prescription, a novel physiotherapy approach aimed at optimising long-term adherence with physical activity. We evaluated the feasibility and short-term benefits of Blue Prescription in people with MS. METHODS: Twenty-seven people with MS (mean age: 51 ± 11 years, with a range of MS type and disability) were assessed at baseline and immediately post-intervention with the MS Impact Scale, MS Self-efficacy Scale, and European Quality of Life Questionnaire. Change in outcomes were analysed with Wilcoxon signed ranks tests. RESULTS: All participants, irrespective of level of disability, were able to choose a physical activity and to engage in it. The physical component MS Impact Scale score significantly improved by a median change of 6.5 (95% CI = -10.5 to -2.0; p = 0.007; effect size = 0.38). There were no other significant changes in outcomes. CONCLUSION: Blue Prescription appears feasible and potentially beneficial, particularly in reducing the negative impacts of MS upon individuals, and thus warrants further evaluation.

Promoting physical activity for individuals with neurological disability: indications for practice.

PURPOSE: This study explored processes that influenced involvement in recreational exercise for individuals with neurological disability, to identify strategies to promote physical activity for health and well-being in this population. METHOD: Nineteen participants (11 males and eight females), aged 20-71 years, with a range of neurological conditions and functional limitations, were recruited in one large metropolitan area in New Zealand. Individual semi-structured interviews explored participants' views, perceptions, and experiences of undertaking recreational exercise. Data were analysed for themes. RESULTS: For some individuals, recreational exercise is undertaken for its physical, psychological, or social benefits, despite the physical activity itself feeling relatively unsatisfactory. In contrast, individuals who are able to undertake their preferred choice of recreational exercise experience intense satisfaction. This motivates self-maintenance of physical activity, even for those individuals who require carer support or assistance to do so. CONCLUSIONS: This study has identified that there can be two forms of involvement in recreational exercise that allows individuals with neurological disability to become more physically active. The information could be further developed and tested in intervention studies to provide strategies for health professionals to facilitate engagement in physical activity for people with neurological disability.

Recovery of walking function in stroke patients after minimal rehabilitation.

BACKGROUND AND PURPOSE: Independent walking function is a highly desired goal amonst stroke victims, and has been well reported in Western literature. However, few studies have investigated the recovery of gait following stroke in Third World countries, where rehabilitation is often minimal or non-existent. METHODS: A descriptive survey, using a structured questionnaire, was conducted on stroke victims, 12-14 weeks post-discharge from the Chris Hani Baragwanath Hospital, Soweto, South Africa. Although the questionnaire included a number of aspects of impairment, disability and handicap, this paper only reports on the recovery of walking function. RESULTS: A total of 361 patients were screened initially. Only 54 fulfilled all inclusion criteria, 38 (70%) were over 50 years of age and 16 (30%) were aged under 50 years. The average length of stay in hospital of the older group was eight days, and in the younger group, 11.5 days. All 54 subjects interviewed were able to walk prior to their stroke. Twelve to fourteen weeks postdischarge, 23 (66%) subjects in the older group and all (100%) of the younger group said they could walk. Half of the older group and nearly all of the younger group could walk outside their homes, unassisted and without appliances. One-third of the subjects experienced knee pain during walking, but only a small percentage said that this pain prevented them from walking. The ability to catch a taxi in Soweto was used as a measurement of the handicap of gait. Twenty (54%) older group subjects and five (31%) of the younger group never caught a taxi. CONCLUSIONS: Although the recovery of gait in these subjects appears to have been good, the results cannot be extrapolated to the stroke population in general due to the stringent selection criteria of the study. Further studies are required to acquire a broader cross-section of the stroke population, including longer follow-up periods to gain insight into the continuation of walking function. This information is necessary in order to plan effective and appropriate rehabilitation services.

Do stroke patients realise that a consequence of hypertension is stroke?

STUDY OBJECTIVE: The specific objectives of the study were to survey residual disability and handicap following stroke. Information on four risk factors, namely hypertension, age, smoking, and alcohol abuse, was obtained. Enquiry was made into the subjects' insight into the causes of their problems. DESIGN: Descriptive survey. SETTING: Baragwanath Hospital and Soweto. PARTICIPANTS: Stroke patients 12-14 weeks post-discharge. OUTCOME MEASURES: Structured questionnaire. RESULTS: A total of 361 patients were initially screened. Only 54 fulfilled all inclusion criteria, 38 (70%) over 50 years of age and 16 (30%) under 50 years. Ninety-three of the 361 died within the first 3 months; 71% of all patients knew that they had suffered a stroke. Only 20% of the total group understood that hypertension had probably caused their stroke, although 76% of the older group and 56% of the younger group had been told at some stage that they were hypertensive. Of the older group 32% knew the name of their medication, 21% could not name their medication and 23% claimed they were on no medication. Similarly in the younger group, 19% could name their medication, 25% could not name their medication, and 12% were on no medication. In addition 16% of the older group and 56% of the younger group admitted to smoking. The abuse of alcohol in both groups was low, but this figure was taken from subjective assessment and may not reflect the true extent of drinking as a risk factor. CONCLUSION: Most patients in this study appear well aware of their hypertension and take medication. However, they seem unaware that their hypertension and stroke are causally linked and their hypertension knowledge is suboptimal. It is also apparent that smoking is increasing as a major risk factor for stroke in the black population of South Africa. Patients need more education regarding hypertension and its consequences.

Criteria for monocular acuity deficit in infancy and early childhood.

Criteria for judging preferential-looking and operant monocular grating acuity test results in pediatric patients are usually based on the distribution of monocular or binocular grating acuities, interocular differences in grating acuities, or test-retest differences obtained from normal populations. In order to compare the sensitivity and specificity of each criterion, normative data were obtained from infants and young children ranging in age from birth to 5 years with common stimuli and staircase procedure. The sensitivity and specificity of each derived criterion were evaluated in two groups of pediatric patients with unilateral eye disorders. Specificity was high for all criteria, ranging from 0.95 to 0.99. However, monocular and binocular grating acuity norms showed low sensitivity to monocular grating acuity deficit, primarily due to high intersubject variability in the normal population. Intersubject variability was lower for interocular grating acuity differences and for test-retest differences, leading to higher sensitivity of these criteria for monocular grating acuity deficit.