Seeta Durvasula

Mortality of people with intellectual disability in northern Sydney

A population-derived cohort of 693 people with intellectual disability in the Lower North Shore (LNS) area of Sydney, New South Wales, Australia was followed from 1989 to 1999 to determine mortality rates, the demographics of the deceased, and causes of death. The deceased were identified through the New South Wales Registrar of Births, Deaths and Marriages. The general population of LNS was used for comparison. Age- and sex-adjusted mortality rates were higher than those in the LNS population. The overall standardised mortality ratio (SMR) was 4.9, while the SMRs for men and women were 4.1 and 6.2, respectively. The death rates were highest at both ends of the age spectrum. The main cause of death was respiratory disease, followed by external causes and cancer. Of those who had died, the greatest proportion were functioning in the severe to profound range of intellectual disability, and half were living in institutional care. Public health resources and services need to be directed to this vulnerable population in order to address the excess mortality.

Incidence of and risk factors for falls among adults with an intellectual disability

BACKGROUND Falls among people with intellectual disability (ID) occur at a younger age than the general population and are a significant cause of injury and hospitalisation. There is very limited research investigating risk factors for falls among people with ID and none with people living outside of formal care arrangements, either independently or with their family.We used a medical chart audit to identify the incidence and risk factors for falls among people with ID living in a variety of settings. METHODS We retrospectively identified 114 consecutive patients, aged 18 years and over who attended a clinic for people with developmental disabilities within a 15-month period. Fall information was measured by carer recall of falls in the past 12 months. Potential risk factors were extracted from medical reports and a patient information questionnaire. Potential predictors were identified using univariate analysis and entered into a multiple logistic regression. RESULTS Of 114 participants, 39 (34%) reported a fall in the previous 12 months.The number of reported falls was similar for formal care and non-formal care arrangements.The vast majority of fallers (84%) reported sustaining an injury from a fall and many potential risk factors were identified. Multivariate analysis revealed having seizures in the past 5 years, a history of fracture and increasing age were risk factors for falls. CONCLUSIONS Falls are a significant health concern for adults with ID of all ages as a result of their incidence and the resulting injuries. Falls appear to be equally an issue for people residing in formal and non-formal care accommodation. Further research is needed to develop screening tools and interventions for this population.

Sunlight and health: Attitudes of older people living in intermediate care facilities in southern Australia

Older people have a high prevalence of falls and fractures, partly due to vitamin D deficiency. Sunlight is a major source of vitamin D, but many older people living in intermediate care facilities have inadequate sunlight exposure. The aim of this study was to determine the sun exposure practices and attitudes to sunlight in this population. Fifty-seven older residents of intermediate care facilities in Sydney, Australia were interviewed to determine their sun exposure practices, their views on sunlight and health and whether these have changed over their lives, factors affecting sunlight exposure and their knowledge of vitamin D. Sixty percent of the participants preferred to be outdoors, despite more than 92% believing that sunlight was healthy. In their youth however, almost 90% had preferred to be outdoors. Poor health, physical constraints and a sense of lack of ownership of outdoor spaces were barriers to sunlight exposure. Improved physical access, more outdoor leisure activities and promotion of greater autonomy may improve safe and appropriate sunlight exposure in this population.

Reconstructing the fall: individual, behavioural and contextual factors associated with falls in individuals with intellectual disability

BACKGROUND Falls are a significant and recurrent problem for individuals with intellectual disability (ID). There has been little exploration of the fall event from the perspective of the individual who falls or their carers. Research has focused predominantly on personal risk factors, leaving the behavioural and contextual analysis of falls much less understood. This study aimed to identify these additional factors as well as briefly explore the fall experience for individuals and their carers. METHOD A qualitative design was used incorporating fall reconstructions and ethnographic-style interviews conducted in the home setting. Nine people with ID and their carers/family member participated: five pairs were living at home and four were in out-of-family-home settings. Interviews were recorded, transcribed verbatim and major themes identified via thematic analysis. RESULTS We identified 17 themes that contributed to falls and fell under the three headings of individual, behavioural or contextual factors. Themes include decreased physical capacity, unsafe behaviours, limited hazard awareness and the impact of others in the home on an individuals fall behaviours. Additionally, families and individuals identified a number of consequences and adaptations which they implemented to alleviate possible fall impact. CONCLUSIONS Qualitative interviews, observational methods and carer assistance are valuable in offering insight into understanding the individual, behavioural and contextual factors associated with falls in people with ID. The fall reconstruction technique may be a useful supplement when evaluating intrinsic risk in programmes designed to reduce falls.

The role of direct support professionals in asthma management

Abstract Background Respiratory disease is common in people with intellectual disability (ID). The inhaled route is preferred for medication administration in treating respiratory diseases, including asthma. People with ID often need assistance with taking medicines due to cognitive, physical, and sensory impairments; in supported accommodation this assistance is provided by direct support professionals (DSPs). Method A qualitative study design was used to explore DSPs’ experiences with asthma medication management. Data were collected via in-depth, semistructured, face-to-face or telephone interviews. Results Key findings included the complex balance of duties undertaken by DSPs, and a lack of consistency in asthma management processes across sites. Conclusions This exploratory research suggests that DSPs are involved in asthma management and required to use clinical judgement, but are not provided with education and tools to manage asthma in, and foster correct inhaler use by, their clients. This highlights the need for tailored guidelines that integrate with the principles of the National Disability Insurance Scheme.

Respiratory medication use in an Australian developmental disability clinic population: messages for health care professionals

Australian data suggest up to 15% of people with intellectual disability (ID) have asthma. The inhaled route of administration is optimal for the management of obstructive airways diseases; however, correct inhaler use requires dexterity and particular breathing patterns and potentially represents a problem in this population due to physical and cognitive deficits. Understanding the nature and extent of inhaler use in persons with ID is important, as correct inhaler technique is imperative for optimal clinical outcomes; however, currently no evidence base exists to inform health professionals. This study describes respiratory medication use, reported prevalence of asthma, and asthma management practices undertaken in a clinic sample of Australian adults with ID. Results showed a prevalence of retrospectively reported asthma of 6%, with 86% of asthma patients prescribed inhaled medication. A review of patient records also indicated omission of some recommended asthma management strategies.

The ability of people with intellectual disability to use inhalers – an exploratory mixed methods study

Abstract Objective: This aim of this study was to assess inhaler technique of people with intellectual disability (ID), and evaluate the effectiveness of teaching with respect to their individual ability to adopt correct technique. Methods: Seventeen people with ID were recruited through existing networks of general practitioners and disability support organisations. Inhaler technique was assessed using validated checklists and placebo devices, followed by provision of individualised training. The educational interaction between participant and researcher was captured via video recording and analysed qualitatively. Results: Seventeen people with ID participated; females comprised 65%. At baseline, no participants correctly used any device. Pressurised metered dose inhalers, with or without accessory devices, were the most poorly used devices. Inhalation steps were poorly performed across all devices. Following training, the proportions of assessed participants that were able to master inhaler technique were 100% of Accuhaler users, 40% of Turbuhaler users, 25% of pressurised metered dose inhaler users and 0% of Handihaler users. Barriers identified included poor comprehension of breathing processes, the lack of attentiveness and poor dexterity. Facilitators for educator delivery of inhaler technique education included the use of analogies and being patient. Conclusions: This is the first study to examine inhaler technique mastery in people with ID. Results show that with education that addresses the unique patient barriers inherent in this group, some individuals can be trained to mastery. Structured modules of inhaler technique training tailored for people with ID, but which can be individualised, are recommended.

Factors influencing adherence with therapeutic sunlight exposure in older people in intermediate care facilities

PURPOSE OF RESEARCH The purpose of this study was to investigate the factors influencing low adherence with therapeutic sunlight exposure in a randomized controlled trial conducted with older people living in intermediate care facilities. MATERIALS AND METHODS The study involved participants in the FREEDOM (Falls Risk Epidemiology: Effect of vitamin D on skeletal Outcomes and other Measures) study, a randomized controlled trial of therapeutic sun exposure to reduce falls in older people in intermediate care facilities. Semi-structured interviews were conducted with thirty participants in the FREEDOM trial, and with ten sunlight officers who were employed to facilitate the sun exposure. Two focus groups involving 10 participants in the FREEDOM trial were also held at the end of the intervention period. Common themes were derived from the interview and focus group transcripts. PRINCIPAL RESULTS The study showed that the perceived health benefits did not influence adherence with the sun exposure. Factors such as socializing with others and being outdoors were more important in encouraging attendance. The main barriers to adherence included the perceived inflexibility and regimentation of daily attendance, clash with other activities, unsuitable timing and heat discomfort. MAJOR CONCLUSIONS This study showed that providing greater flexibility and autonomy to older people in how and when they receive sun exposure is likely to improve adherence.

Knowledge that people with intellectual disabilities have of their inhaled asthma medications: messages for pharmacists

Background Fifteen percent of Australians with intellectual disability (ID) are reported to have asthma. People with ID are at risk of poor health knowledge due to deficits in intellectual and adaptive functioning, but their medication knowledge has largely been ignored in research to date. Objective To explore the level of understanding of asthma medication use of people with ID who self-administer their inhaled medications, in order to inform future educational support. Setting The research was conducted in NSW, Australia, at the participants’ homes, the point of health care access, or the offices of relevant support organisations. Method In this qualitative study face-to-face interviews were conducted with people with ID using a semi-structured interview guide. The interviews were recorded, transcribed and thematically analysed. Main outcome Identification of barriers to asthma medication self-management by people with ID. Results Seventeen people with ID who self-administer their asthma medications were interviewed. Factors influencing their asthma medication knowledge and use included understanding of their illness and the need for medication; aspects of self-management and autonomy versus dependence. This sample of people with ID had a good understanding of the importance of using their inhaled asthma medications, as well as asthma triggers, and the difference between use of preventer and reliever medications. Both enablers and barriers to asthma medication self-management were identified in the domains of managing attacks, adherence, knowledge of side effects and sources of information on correct use of inhalers. The level of autonomy for medication use varied, with motivation to self-manage asthma influenced by the level of support that was practically available to individual participants. Conclusion This research investigated aspects of asthma medication self-management of people with ID. Based on the barriers identified, pharmacists should promote use of spacers and written asthma action plans as well as counsel people with ID about how to recognise and minimise side effects of asthma medications. Specific strategies for pharmacists when educating people with ID and their caregivers include active listening to determine understanding of concepts, exercising care with language, and working with the person’s known routines to maximise adherence with preventer medications.

A guide for the assessment and management of vitamin D status in people with intellectual disability (developed as an AADDM Working Party initiative).

Vitamin D insufficiency has been associated with adverse health consequences, principally increased falls, osteoporosis, and fractures. Associations have also been proposed between vitamin D insufficiency and diseases of the immune system, cancer, psychiatric disease, respiratory disease, cardiovascular disease and abnormalities of glucose metabolism. For a number of reasons, vitamin D insufficiency is relatively common in people with intellectual disability (ID). A study of 410 people with ID in Sydney showed that 43% had vitamin D levels of less than 50 nmol/l (Law, Durvasula, & McElduff, 2005), as did 57% of a largely institution-based group of people with ID in Adelaide (Vanlint & Nugent, 2006). This is likely to partly explain the relatively high incidence of fractures seen in the population with ID when compared to the general population (Glick, Fischer, Heisey, Leverson, & Mann, 2005; Vanlint & Nugent, 2006). The following is intended to be a practical guide for clinicians, family members and support workers who care for people with ID. It has been prepared by a Working Party consisting of Australian clinicians and researchers with an interest in the care of people with ID (and endorsed by the Australian Association of Developmental Disability Medicine). Recommendations for the detection and management of vitamin D insufficiency have been developed for general practitioners, and will be published in a separate article by the same authors in Australian Family Physician (Vanlint, Nugent, Durvasula, Downs, & Leonard, 2008). The Working Party reviewed the limited literature which specifically pertains to vitamin D and ID, as well as the large body of literature pertaining to vitamin D in general, especially in the elderly. Two recent Australian papers are of special note, and are commended to readers: the recent Position Statement released by the Working Party of the Australia and New Zealand Bone and Mineral Society (Diamond, Eisman, et al., 2005), and the Recommendations from the Calcium and Vitamin D Forum held in Melbourne in July 2005 (Ebeling & Eisman, 2005).