Factors associated with hospitalisations for ambulatory care‐sensitive conditions among persons with an intellectual disability – a publicly insured population perspective

Background Hospitalisations for ambulatory care‐sensitive (ACS) conditions are used as an indicator of access to, and the quality of, primary care. The objective was to identify factors associated with hospitalisations for ACS conditions among adults with an intellectual disability (ID) in the context of a publicly insured healthcare system. Methods This study examined adults with an ID living in a Canadian province between 1999 and 2003 identified from administrative databases. Using 5 years of data for the study population, characteristics of persons hospitalised or not hospitalised for ACS conditions were compared. Using a conceptual model, independent variables were selected and an analysis performed to identify which were associated with hospitalisations for ACS conditions. The correlated nature of the observations was accounted for statistically. Results Living in a rural area [odds ratio (OR) 1.3; 95% confidence intervals (CI) = 1.0, 1.8], living in an area with a high proportion of First Nations people (OR 2.3; 95% CI = 1.3, 4.1), and experiencing higher levels of comorbidity (OR 25.2; 95% CI = 11.9, 53.0) were all associated with a higher likelihood of being hospitalised for an ACS condition. Residing in higher income areas had a protective effect (OR 0.56; 95% CI = 0.37, 0.85). None of the health service resource variables showed statistically significant associations. Conclusions Persons with an ID experience inequity in hospitalisations for ACS conditions according to rurality, income and proportion who are First Nations in a geographic area. This suggests that addressing the socio‐economic problems of poorer areas and specifically areas densely populated by First Nations people may have an impact on the number of hospitalisations for ACS conditions. Study strengths and limitations and areas for potential future research are discussed.     

A longitudinal study of the intra‐country variations in the provision of residential care for adult persons with an intellectual disability

Background Small‐scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched. Method The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10‐year period and the extent of the intra‐country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community‐based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation. Results Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10‐year period and the number of new admissions to this form of provision remained high in certain areas. Conclusions The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.     

Utilization of inpatient care and its determinants among persons with intellectual disabilities in day care centres in Taiwan

Background In Taiwan, current understanding is limited concerning the manner in which health services are utilized by persons with intellectual disabilities (ID). The objective of this study is to describe the patterns of inpatient care sought by persons with ID, and factors affecting inpatient care utilization. Method The primary method used in this study was a cross‐sectional survey of 1390 persons with ID in day care centres. Data were obtained from responses to a questionnaire, copies of which were mailed to 30 day care centres catering for persons with ID. The questionnaire assessed demographic and health characteristics, disability status, and inpatient care utilization for the 12 months leading up to the survey. Multivariate logistic regression analysis identified factors independently associated with inpatient care. Results Findings indicated that the average age of the people with ID in the centres was 13.7 years. Fifty per cent of people were afflicted with multiple handicaps, with an average of 26 outpatient visits made per person during the 12 months, and 16% of persons having been hospitalized within the previous year. The average hospital stay was 6 days. Inpatient care was more likely to be used by those individuals with an ID who were younger, had multiple handicaps, required rehabilitation, and had other disabilities and existing illnesses. Conclusions The study concluded that the parameters describing age of persons with ID, as having an existing illness, and requiring rehabilitative care were statistically significant in the logistic regression model of the inpatient care.     

Living conditions of adults with intellectual disabilities from a gender perspective

Background The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. Methods Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). Results In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender‐related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender‐related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. Conclusions Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender‐neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID.     

End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities

Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care. Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis. Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments. Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.     

Consistent mapping and automatic visual search: comparing persons with and without intellectual disability

Background Merrill et al. (1996) reported that persons with intellectual disability (ID) were slower at learning a visual search task to automaticity relative to persons of the same age without ID. For persons without ID, automaticity develops most rapidly under conditions in which a response is always the same for a particular stimulus. This study was designed to investigate whether persons with and without ID are differentially sensitive to the influence of consistently mapped versus inconsistently mapped stimulus responses. Methods The primary manipulation was the consistency between a particular stimulus and the response to that stimulus in a visual search task. Sixteen participants with ID and 16 without ID searched displays of two, three, or four pictured objects to determine if a target was present. For half of the participants, the targets were always targets. For the other half, the targets became nontargets on 25% of the trials. Results Analyses focused on changes in response times associated with set size. Because automaticity allows for parallel processing, the elimination of significant effects of set size was taken as an index of the development of automaticity. Results indicated that inconsistent mapping significantly slowed the development of automaticity for the participants without ID but not for the participants with ID. Discussion Results were discussed in terms of the role of inhibition processes in the development of automatic search and detection. The effectiveness of inhibition processes was compromised by the consistency manipulation. The effect of the consistency manipulation was greater for the participants without ID because they were presumed to be using inhibition processes more effectively during practice than did the participants with ID.     

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.     

An exploratory study into health care policy for persons with intellectual disabilities in Taiwan

Background Although Taiwan has already had a higher quality of health care compared with other countries, there still is a need to review the quality and effectiveness of services provided. The lack of health care policy for persons with disabilities is a reflection of health care provision in Taiwan. Health care provision problems will limit persons with disabilities in their access to the health care system. The purpose of the present study was to examine the general beliefs about the current health care policies for persons with intellectual disabilities (ID) in Taiwan. Methods Data were obtained from two sources, namely government policies analysis and interviews with representatives for key stakeholders in the field of ID. Results The results illustrate that health care service problems for persons with ID include: how to enforce the discovery system and early intervention service, disability evaluation system, National Health Insurance medical payment and medical care resource development are still confining their quality of care. Furthermore, the links between social welfare, education and health care have been lost because the different roles and perspectives of people in these fields are fundamentally at odds with one another. Health care professionals have become less reform‐minded as a consequence of the conditions of their work. Consequently, a complete and coordinated health care policy for persons with ID has become unattainable in society. The present paper draws on evidence from research and policies to explore the problems and potential of service development for persons with ID, and to identify review and action points for managing its implementation.     

Parents of children with and without intellectual disability: couple relationship and individual well‐being

Background Research on parents of children with intellectual disability (ID) has identified a range of risk and protective factors for parental well‐being. In family research, the association between marital quality and depression is a vital field of investigation. Still little research has addressed how aspects of the couple relationship affect the adaptation of parents of children with ID. The present study examined predictive links between couple relationship factors (marital quality and coparenting quality) and individual well‐being. Methods Data were obtained through self‐report questionnaires completed by parents of children with ID (mothers, n = 58; and fathers, n = 46) and control children (mothers, n = 178; and fathers, n = 141). To test the hypothesis that couple relationship factors predicted individual well‐being, multiple regression analyses were performed controlling for the following risk factors identified by previous research: child self‐injury/stereotypic behaviour, parenting stress, and economic risk. Results Marital quality predicted concurrent well‐being, and coparenting quality predicted prospective well‐being. Mothers of children with ID reported lower well‐being than other parents. Conclusions There is a continued need for investigation of the details of the links between couple relationship and individual well‐being in parents of children with ID. Couple relationship factors should be given consideration in clinical interventions.