General practitioners' views on perceived and actual gains,benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability

Background Health assessments for people with intellectual disability have been implemented in the UK, New Zealand and Australia, and have led to improved health outcomes. The Comprehensive Health Assessment Program (CHAP) has been shown to improve the health of people with intellectual disability. Similar to other health assessments, it is designed to address healthcare needs, many of which are often overlooked in this population, through better communication between the general practitioner (GP), support worker and the person with intellectual disability. This study investigates GP views of the perceived and actual benefits, gains and barriers associated with its uptake and use in practice. Method As part of a larger randomised controlled trial of the CHAP, 46 GPs in Queensland, Australia, completed two telephone interviews that included open‐ended questions about their perceptions of the health assessment. The GPs were enrolled in the intervention arm of the trial. Interviews took place at commencement and conclusion of the trial to gain the views of GPs as they experienced using the CHAP. Thematic analysis was used to identify key themes and patterns from the GP responses. Results Four themes were identified: better healthcare and uncertain benefits captured GP perceptions of the potential gains associated with use of the CHAP, while two further themes, organisational barriers in the general practice setting and engagement across the healthcare triad highlighted strengths and barriers related to implementation. Anticipated concerns about time raised by GPs at commencement of the trial were borne out in practice, but concerns about communication and cooperation of people with disabilities were not. Matters associated with support worker engagement emerged as an area of concern. Conclusions GPs perceive the CHAP as a structured and comprehensive approach to the detection of medical problems as well as an aid in overcoming communication barriers between the doctor and the person with disability. Our findings suggest that some GPs may find it difficult to predict the benefits of using health assessments such as the CHAP. Achieving optimal uptake is likely to require attention at policy and systems levels to address: GP time constraints in providing healthcare to this population; enhancement of support worker training and organisational structures to encourage comprehensive health assessment and follow‐up activities; and GP awareness of the improved health outcomes shown to derive from the use of comprehensive health assessments.     

Who provides primary health care for people with an intellectual disability: General practitioner and general practice characteristics from the BEACH dataset

Background People with an intellectual disability (ID) have complex healthcare needs yet experience barriers to participation in primary care. Further research is required to examine if the characteristics of general practitioners (GPs) and their practices influence their delivery of care to people with ID.

Methods Data from the Bettering the Evaluation and Care of Health program was used to determine if there are significant differences in the ID-GP and Non ID-GP group. Analysis included characteristic-specific rates, chi-square, and odds ratios.

Results This study found that GPs who were Australian medical graduates, practising in rural areas, in accredited practices, and in some states of Australia were significantly more likely to be classified to the ID-GP than the Non ID-GP group.

Conclusions This research suggests that certain GP and practice characteristics may present barriers to primary care participation for people with ID and supports the need for a comprehensive national action framework.     

Confidence of group home staff in supporting the health needs of older residents with intellectual disability

Background Increased life expectancy for people with intellectual disability is accompanied by increased age-related health concerns. People ageing with intellectual disability experience more health conditions and are relocated to aged care earlier than their age peers.

Method Group home staff were surveyed about their (a) training and confidence in 11 health conditions and 7 health procedures, and (b) attitude to relocating residents with health needs to aged care.

Results Staff training in each of 10 health conditions and 7 health procedures was positively associated with increased confidence in supporting residents with those health issues. Higher staff confidence in caring for residents with 9 conditions and requiring 4 procedures was negatively associated with a likelihood of recommending that a person with those health needs should relocate to aged care.

Conclusions Targeted training of staff in age-related health issues may contribute to better health care and delay residents relocating to aged care.     

Lifestyle and health behaviours of adults with an intellectual disability

Background There is currently no published research in Ireland on the health behaviours of adults with an intellectual disability (ID). With an increasing age profile and similar patterns of morbidity to the general population, the ID population would benefit from baseline data from which to establish risk factors. Methods A questionnaire survey was carried out with 157 carers of people with an ID in the west of Ireland. Results The results of this survey were compared with results of a health survey for the general population in the same region. The present survey found that 68% of the ID sample was overweight or obese. Levels of smoking (2.6%) and regular alcohol consumption (10.3%) were relatively low in comparison with the general population. However, participation in exercise and adherence to a healthy diet were poor. The level of resident choice and decision‐making did not have any relationship to health behaviours nor did residential setting. Finally, there were no gender differences in health and lifestyle profiles. Conclusion The results of this study have important implications for health promotion interventions for people with an ID.     

Health gain through health checks: improving access to primary health care for people with intellectual disability

People with intellectual disability were identified through the local register and through liaison with general practitioners (GPs). A consultation exercise was conducted with users and carers to ascertain their experiences and perspectives of primary health care (GP services). A comprehensive health check was devised and administered to about 120 people to detect physical disorders, especially cardiovascular risk factors. A standardized checklist was used to determine the population of people with psychological and psychiatric problems. Case notes were reviewed after nearly one year to determine physical and psychological health gain. Significant gains were noted with regard to physical disorders. In contrast, mental health problems were underreported and participants had achieved few gains on follow-up. The reasons and implications for future service planning are discussed.     

Prevalence and incidence of health problems in people with intellectual disability

The objective of this study was to determine the prevalence and incidence of the most frequent chronic health problems in relation to age in people with intellectual disabilities living in residential facilities in the Netherlands. A prospective cohort study was done with four data collections, each with an interval of one year. Data were collected by means of questionnaires which were completed by each person's physician. Striking results included the reported high prevalence and incidence of visual and hearing impairment, which was even more pronounced in people with Down's syndrome than in people with intellectual disability resulting from other causes. Gastrointestinal problems also appeared to have high incidence rates. Dementia was frequently reported in people with Down's syndrome aged 40 years and older. The results reflect the need for a more predictive policy which can anticipate health problems in people with intellectual disability.     

People with intellectual disability and their health problems: a review of comparative studies

Background The transition of people with intellectual disability (ID) from care institutions to the community – according to Western policy – results in a shift of responsibility towards primary health care services. In order to provide optimal care to people with ID living in the community, general practitioners need to be aware of the specific health problems of this patient category. The aim of this paper is to present an overview of recent studies on the specific health problems of people with ID, in particular on health problems of people with ID in the community, compared to those of the general population. Method To reliably compare health problems of individuals with and without ID, this review is limited to comparative research using a control group of individuals without ID. The focus of the review concentrates on international literature, published between 1995 and 2002. Results Most comparative research among people with ID presents higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures. These health problems are specific for people with ID, both in general and living in the community in particular. Conclusions there are only few studies focusing on health problems in people with ID in which a control group of individuals without ID is included. Most comparative studies on health problems in people with ID are based on comparison with reported prevalence rates of general health surveys.     

Beating the barriers: recruitment of people with intellectual disability to participate in research

Background The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research. Methods Our project was a randomized controlled trial aiming to improve health advocacy of people with ID. We approached many organizations to recruit participants and kept records of our results. Recruitment was very low for the first 4 months. Then we adopted two new recruitment strategies – in-service telephone recruitment and meetings with prospective participants. We then monitored the subsequent recruitment rates. We also questioned participants about the difficulties they encountered when considering recruitment. Results Initial recruitment of participants yielded less than one-third of the expected number. Additional strategies implemented were partially successful. Significant barriers to recruitment included several sectoral issues and the challenges arising from the research process. Conclusions While this population is a difficult one to reach for research, attempts to do so should not be abandoned, because the potential health benefits for this underserved group far outweigh the recruitment barriers experienced.     

General psychiatric services for adults with intellectual disability and mental illness

BACKGROUND: Adults with intellectual disability (ID) and mental illness may use general or specialist psychiatric services. This review aims to assess if there is evidence for a difference in outcome between them. METHODS: A literature review was conducted using a variety of electronic databases and hand-search strategies to identify all studies evaluating the outcome of people with ID and mental illness using general psychiatric services. RESULTS: There is no conclusive evidence to favour the use of general or specialist psychiatric services. People with ID stay less time on general psychiatric than specialist inpatient units. People with severe ID appear not to be well served in general services. Older studies of inpatient samples suggest a worse outcome for people with ID. Novel specialist services generally improve upon pre-existing general services. Assertive outreach in general services may preferentially benefit those with ID. Recent studies suggest similar lengths of stay in general psychiatric beds for people with and without ID. CONCLUSIONS: Although 27 studies were located, only two were randomized controlled trials. The evidence is poor quality therefore further evaluation of services employing a variety of designs need to be employed to give more robust evidence as to which services are preferred.     

Mental health and intellectual disability: culture and diversity

Background Compared with that in mental illness, cultural variation in popular conceptualisations of intellectual disability has been rarely addressed. Methods A survey of the relevant literature was conducted. Results and Conclusion Preliminous conclusions are that local conceptualisation does not lead to invariant social response, but that intellectual disability is generally distinguished from mental illness.     

Epilepsy and intellectual disability

A Medline and Psychline literature review of epilepsy in people with intellectual disability was performed. The review has highlighted the importance of the impact of epilepsy on the lives of individuals and their families, affecting physical morbidity, leading to an increased mortality and increasing the care‐giving burden. Interventions with a strong evidence base are mainly pharmacological with an increasing body of work on the novel antiepileptic drugs. Surprisingly little research exists into the quality of service provision for this population. The authors suggest three areas for future work: (1) an increasing application of research methodologies such as direct observation and qualitative studies into this field; (2) an exploration of the broad impact of treatment and (3) the possibility that epilepsy is a barrier to care provision.     

People with intellectual disability in general practice: case definition and case finding

In a general practice database containing data on 62000 patients, those with intellectual disability (ID) were traced. Health problems in this database were recorded according to the International Classification of Health Problems in Primary Care (ICPC) code. By using selected codes, 318 people with ID (0.65% of the study population) were found; the sample contained nearly as many false positives. Adding up the percentage of people with ID living in residential facilities, the total prevalence of people with ID was estimated as 0.82%. Documentation on the cause and level of ID was available in about half of the cases. The demographic characteristics of the people with ID were significantly different from the general population: there was a higher percentage of males and a lower percentage of people over 50 years of age among those with ID. Information about the use of home care was virtually non-existent in the general practice data. The results are compared with those of other studies. The discussion de ls with reasons for complete documentation of cases with ID in general practice and the role of the general practitioner in health care supply to people with ID.     

Psychiatric health needs and services before and after complete deinstitutionalization of people with intellectual disability

Before total deinstitutionalization in Norway, many believed that the ordinary health care system could give people with intellectual disability the same or even better health care than that which they received in institutions. It was said that institutions created psychiatric problems, and that these would diminish or even disappear with the closing of these establishments. The present study is a prospective cohort study without a control group. It examines the frequency of mental health problems and the psychiatric health services which 109 subjects aged between 16 and 65 years received before (1987) and after (1995) deinstitutionalization. Mental health problems were defined as behavioural disturbances, and psychiatric disorders and symptoms. Psychiatric disorders were identified with the Psychopathology Instruments for Mentally Retarded Adults (PIMRA), which were filled in by the carers. Behaviour disturbances were identified as having occurred or not during the previous year. Psychiatric problems remained frequent, and there was a significant increase in behavioural problems in spite of total deinstitutionalization and improved physical living conditions. Access to qualified help, such as psychologists and psychiatrists, had been substantially reduced. Most mental health problems among people with intellectual disability are not solved by reorganization or deinstitutionalization, and such measures are no substitution for professional assistance.