Intellectual Disability In Residential Care Research Articles

Records of quality indicators for management of long‐term health conditions of patients with intellectual disabilities in Dutch residential care

AbstractBackgroundType 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High‐quality management of these long‐term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long‐term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care.MethodsThis retrospective study utilised medical record data from a large Dutch long‐term care provider. We assessed the occurrence of cardiovascular disease (ICPC‐2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long‐term condition, we analysed data entries in an 18‐month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages.FindingsOf the three long‐term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; n = 287), followed by cardiovascular disease (5.8%; n = 195) and COPD (3.0%; n = 101). Of those who received management for their long‐term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected.ConclusionsBecause of the infrequent recording of quality indicators, recording of management of long‐term conditions for patients with intellectual disabilities in long‐term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long‐term conditions, as suboptimal recording limits opportunities for evaluation and improvement. Within a broader trend towards data‐driven work methods in healthcare, recording of quality indicators requires attention from practice, research and policy.

Reviewing causes of death of individuals with intellectual disability in New South Wales, Australia: a record-linkage study.

People with intellectual disability (ID) have a much higher mortality rate than the general population. To reduce the rate of mortality of people with ID, it is critical that causes of death are properly understood, recorded and reported. Formal reviews of causes of death are used in some countries to ensure that causes of death are accurate. To date, the impact of these formal reviews on understanding causes of death of people with ID has not been quantified. The study aimed to quantify the impact of formal reviews of deaths on the understanding of causes of death of people with ID who died while living in residential care. Individuals (851) with ID who died in residential care in New South Wales (NSW), Australia, between 1 December 2002 and 31 December 2013, who had a cause of death recorded in both the NSW Cause of Death Unit Record File (COD-URF; cause of death recorded at time of death) and NSW Ombudsman dataset (cause of death recorded after in-depth review) were included in the study. We assessed agreement in coding for cause of death by comparing the International Classification of Diseases 10th Revision (ICD-10) codings at three levels of diagnostic specificity, for both underlying and additional causes of death. We conducted our analysis through both descriptive comparison and through two boosted regression trees. Approximately half of the underlying causes of death were different after review by the NSW Ombudsman compared with the COD-URF. Certain causes of death (determined by ICD-10 chapter) were less likely to predict matches between the dataset than others, with individuals with mental, behavioural and neurodevelopmental disorders recorded in the COD-URF least likely to have a matching cause of death in NSW Ombudsman dataset. For deaths where there was no agreement at any level between the datasets, a high level of unknown causes of death was recorded. Formal review of deaths of people with ID in residential care is important to determining true causes of death and therefore developing appropriate health policy for people with ID.

Cognitieve gedragstherapie voor depressieve klachten bij jongeren in residentiële zorg met een LVB in vergelijking met normaal begaafde jongeren

Abstract Cognitive behavioural therapy and depressive symptoms among youth with and without Mild Intellectual Disability in residential care: an exploratory study investigating ‘Op Volle Kracht’ Depression is at least as prevalent in youth with a mild intellectual disability (MID) as it is in youth without disabilities. Little is known however about the etiology and treatment of depression in this group. This paper aims to investigate the possiblities for cognitive behavioural therapy in youth with MID by (1) testing the validity of Beck’s cognitive theory and Nolen-Hoeksema’s response style theory in youth with and without a MID in residential youth care; and (2) to examine the effects of Op Volle Kracht (OVK), a CBT-based depression prevention program among youth with and without a MID in a residential treatment setting. In study 1 the relationship between negative cognitive errors (Beck), response styles (Nolen- Hoeksema) and depressive symptoms was examined in 135 adolescents (age 9-17 years) using linear regression. Study 2 was an initial cluster randomized controlled trial in which twenty residential treatment groups (including in total N=92 adolescents aged 9-17 years), half of which targeted adolescents with a MID, were randomly assigned to either treatment as usual (TAU), or a combination of TAU and the group-CBT-program Op Volle Kracht (OVK+TAU). Depressive symptoms, cognitive errors and response styles were assessed at pre-test, post-test and 3 months follow-up. The data were analyzed by mixed effects linear regression analyses with age and gender as covariates. Results Study 1 showed that only the cognitive error ‘underestimation of the ability to cope’, and a ruminative and distractive response style predicted depressive symptoms in both youth with- and without MID. The negative cognitive error ‘underestimation of the ability to cope’ was more prevalent among youth with MID than among youth without MID. Study 2 showed that the group CBT-program OVK was effective in reducing rumination, but not in reducing depressive symptoms or cognitive errors. This effect was the same for youth with and without a MID. The main premises of Beck’s cognitive theory and Nolen-Hoeksema’s response style theory of depression are applicable to both youth with and without a MID. The cognitive error ‘underestimation of the ability to cope’ poses a specific risk factor for developing a depression for youth with a MID and may require special attention in treatment and prevention of depression. The specifically adapted program OVK did not show effectiveness in reducing symptoms of depression in youth in residential care.

Support staff's perceptions of discontinuing antipsychotics in people with intellectual disabilities in residential care: A mixed-method study.

BackgroundAlthough there is little evidence on their efficacy regarding challenging behaviour, antipsychotics are the most used psychotropic drugs in residential intellectually disabled people. Discontinuation is possible for some residential clients with intellectual disabilities. This study aimed to gain insight into support staff's perceptions of discontinuing antipsychotics in residential clients with intellectual disabilities.MethodFour focus groups were conducted in this mixed‐methods study, followed by a survey.ResultsA large majority of support staff perceive antipsychotics to be effective in controlling challenging behaviour. Support staff regarded themselves as willing to contribute to the discontinuation of antipsychotics, but were more confident about achieving reductions.ConclusionsThe attitude of the majority of support staff towards discontinuation provides a good basis for regularly reviewing antipsychotics use. A reduction plan should include preliminary steps, methods of monitoring and evaluating the process, and establishing measures for dealing with possible crises.

Study protocol: a randomized controlled trial testing the effectiveness of an online mindset intervention in adolescents with intellectual disabilities

BackgroundAdolescents with intellectual disabilities have an increased risk of developing academic, social, and psychological problems compared with non-disabled peers. These difficulties might have an impact on the implicit theories—or so called mindset—of these youth. Youth with a fixed mindset believe that their attributes are static while youth with a growth mindset believe their attributes are malleable. A growth mindset can positively affect the academic and psychosocial development of youth and can be stimulated by so called ‘mindset interventions’. Nevertheless, mindset interventions specifically adapted to adolescents with intellectual disabilities are non-existing.Methods/designThe aim of the present study is to conduct a randomized controlled trial (RCT) to test the effectiveness of the online mindset intervention “The Growth Factory” aimed to teach adolescents with intellectual disabilities a growth mindset and thereby positively impacting their psychosocial development. The RCT targets adolescents (12–23 years) with mild to borderline intellectual disabilities (IQ 50–85) admitted to residential care or special education. Participants will be individually randomized to the intervention (n = 60) or control (n = 60) group. The intervention group will individually participate in the six sessions of “The Growth Factory” and the control group will receive care as usual. Primary outcome will be mindset. Empowerment, behavior problems, self-esteem, treatment motivation, therapeutic alliance, challenge seeking, and the impact of social exclusion will be included as secondary outcome measures. Moreover, moderation (i.e., intervention satisfaction, IQ, age, baseline mindset, gender) and mediation effects will be investigated. Self-reported and mentor assessments will be administrated at baseline, post-test and at three (except mentor assessment) and six months follow-up.DiscussionThis paper describes the design of a RCT examining the effectiveness of the online mindset intervention “The Growth Factory” aimed to empower adolescents with intellectual disabilities. If effective, “The Growth Factory” makes an important contribution to the treatment and psychosocial development of adolescents with intellectual disabilities in residential care and special education. Due to the online approach, implementation will be efficient and cost-effective and therefore the intervention “The Growth Factory” can be used on large scale.Trial registrationDutch Trial Register NTR5460. Registered 2 October 2015.

‘It's different, but it's the same’: perspectives of young adults with siblings with intellectual disabilities in residential care

Accessible summary Siblings often play important roles in the lives of people with intellectual disabilities. This study suggests that young adults who have siblings in residential care can feel isolated in their experience. Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities. There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. AbstractBackground: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care.Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed.Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as ‘one family’ whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated.Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.

Should we educate care staff to improve the oral health and oral hygiene of people with intellectual disability in residential care? Real world lessons from a randomized controlled trial.

This study assessed the impact of a multitiered oral health educational program on the oral health and oral hygiene of people with intellectual disabilities (ID). In a controlled pretest, posttest trial, with cluster randomization, a pyramidal training program was delivered to residential staff who cared for a randomly allocated, purposively stratified intervention group of people with ID living in community care homes. A control group lived in centers where staff received no training. Clinical measures were carried out pre- and posttest. Difference in Modified Gingival Index (MGI) and Plaque Index (PI) was measured posttest using ANCOVA. Seventy-six participants took part, representing 49.0% of the invited sample (n = 155). Fourteen did not receive clinical examination. There was one dropout 6-9 months later. A 10.5% and 8.5% reduction in mean MGI and PI was evident at posttest but did not show statistically significant difference, when controlling for baseline covariates (p > 0.05, ANCOVA). Mean MGI and PI scores were not significantly different among people with ID whose care staff had and had not received oral health training. Limitations are discussed. The results indicate that this program failed to significantly improve oral health or oral hygiene, despite the intervention being "educationally" successful. More research is needed.

How Parents Experience the Quality of Support: A Survey in Residential Care

AbstractAs parents and/or legal guardians are considered to be part of the care system of a person with intellectual disabilities (ID), it is of import to acquire more specific and transparent views from parents and/or legal guardians regarding quality of support. This study examined the views of parents and/or legal guardians on the quality of support provided to clients with an ID in residential care in the Netherlands, in order to improve the partnership between parents/legal guardians and facilities. A questionnaire developed in close cooperation with parents specifically for this aim was sent to 1,785 households (parents and/or legal guardians) of clients in the Netherlands. The questionnaire consists of the following five subsections: daily care, housing, day services, leisure activities, and communication. A multiple regression analysis was performed to determine which factors contributed to the satisfaction of parents and/or legal guardians. The questionnaires returned (n = 1,058) showed that respondents rated the overall quality of support at an average grade of 7.3 out of 10 (SD: 1.2). Small but mostly significant differences were found between the subsections. A significant model for the overall quality of support emerged; nevertheless, the predictor variables accounted for only 4.0% of the explained variance in the data set. Special attention should be paid to the percentage of parents and/or legal guardians who gave unsatisfactory scores (10%) and the substantial percentage (25%) of parents and/or legal guardians that rated the quality of care only marginally satisfactory (grades 6–7). The results of this questionnaire provide opportunities for optimal use of the qualities and knowledge of parents and/or legal guardians, opportunities for mutual communication between the service organization and parents and/or legal guardians, and guidance for policy regarding improvements in support.

National survey 2009 on medical services for persons with intellectual disability in residential care in Israel

National survey 2009 on medical services for persons with intellectual disability in residential care in Israel

Staff behavior toward children and adolescents in a residential facility: A self-report questionnaire

The purpose of the present study was to examine psychometric properties of the Staff Behavior toward Clients questionnaire (SBC), a self-report measure for care staff working with children and adolescents with mild to borderline intellectual disabilities in residential care. Ninetynine care staff completed the SBC and the Strengths and Difficulties Questionnaire (SDQ) for 99 of their clients. Factor analysis revealed four factors (i.e. behavior regulation, client-directed care, teaching and empowerment). Results indicated excellent internal consistency of all factors and ability of the SBC to detect differences in client populations with respect to behavior problems. These data suggest that the SBC could provide a reliable and valid measure of staff behavior toward clients in residential facilities.

National survey 2008 on medical services for persons with intellectual disability in residential care in Israel

National survey 2008 on medical services for persons with intellectual disability in residential care in Israel

National survey 2007 on medical services for persons with intellectual disability in residential care in Israel

In Israel, the Office of the Medical Director of the Ministry of Social Affairs is responsible for the medical service in residential-care centers for persons with intellectual disability (ID). A standard annual questionnaire was developed during 1997-1998, and the first national survey study was conducted in 1998. This present paper presents the findings of the seventh national survey in 2007, for which the following information was gathered via questionnaires: age, gender, and level of intellectual disability of persons served at the residential care center in question, status of the population served, functional profile, nursing, medical, and allied professional staff, number of annual examinations, preventive medicine aspects, medications, number of annual cases of infectious disease, annual unintentional injuries, number of deaths, number of hospitalizations, internal residential center hospitalization, ambulatory out-patient use, use of outside laboratory examinations, and dental care. In 2007, 6,872 persons were served in 9 government, 37 private, and 13 public centers. The average number of persons served per center was 116.47 (range 24 to 341). The survey in 2007 showed that 79% of the population with ID in residential care in Israel was between the ages of 20 and 60 years old, 44% with severe or profound ID, 43% with moderate and 13% with mild ID. Twenty-seven percent were nursing patients, and 18% were confined to a wheelchair, 34% had epilepsy, 86% were found to be receiving medication daily for chronic illness, and 51% received psychotropic medication for psychiatric illness.

National survey 2004 on medical services for persons with intellectual disability in residential care in Israel

In Israel, the Office of the Medical Director of the Ministry of Social Affairs is responsible for the medical service in residential-care centers for persons with intellectual disability (ID). A standard annual questionnaire was developed during 1997-1998, and the first national survey study was conducted in 1998. This present paper presents the findings of the seventh national survey in 2004, for which the following information was gathered via questionnaires: age, gender, and level of intellectual disability of persons served at the residential care center in question, status of the population served, functional profile, nursing, medical, and allied professional staff, number of annual examinations, preventive medicine aspects, medications, number of annual cases of infectious disease, annual unintentional injuries, number of deaths, number of hospitalizations, internal residential center hospitalization, ambulatory out-patient use, use of outside laboratory examinations, and dental care. In 2004, 6,610 persons were served in nine government, 37 private, and 12 public centers. The average number of persons served per center was 113.97 (range 23 to 372). The survey in 2004 showed that 79.2% of the population with ID in residential care in Israel was between 20 and 60 years of age; 48.8% had severe or profound ID, 41% had moderate ID, and 10% had mild ID; 23% were nursing patients; 19% were confined to a wheelchair; 31% had epilepsy; 83% were receiving medication daily for chronic illness; and 52.5% were receiving psychotropic medication for psychiatric illness.

TRENDS AND MILESTONES

Persons with intellectual disability (ID) have been observed to have more mental health problems than the general population. This study was conducted to study mental health services for persons with ID (all ages) in residential care in Israel. An annual questionnaire sent to the medical clinics in all residential care centers for the period 1998-2006 was analyzed to study the trends over time in the number of recruited psychiatrists, psychiatric medication, and hospitalization for persons with ID in residential care in Israel. The results showed an increased number of psychiatrists working with this population-from 6.14 psychiatrists per 1,000 study population in 1998 to 7.75 in 2006. Psychotropic medication also increased from 46% to 51% over the same period, and psychiatric in-patient hospitalization increased from 5.48 to 7.75 per 1,000 study population. We conclude that the psychiatric services to this residential care population have increased over the study period. We see a need for a formal subspecialty in psychiatry, training, and research.

National survey 2005 on medical services for persons with intellectual disability in residential care in Israel

National survey 2005 on medical services for persons with intellectual disability in residential care in Israel

Physical Training and Well‐being in Older Adults with Mild Intellectual Disability: A Residential Care Study

Background Exercise is important for health and well‐being. The aim of this study was to investigate the effect of physical training on general well‐being and self‐image in older people with intellectual disability.Methods This study evaluated older adults with intellectual disability in residential care in Israel. The concept of well‐being perceived by the participants was measured by direct interview with a questionnaire consisting of 37 structural statements. The physical training programme was conducted three times a week for 10 consecutive months.Results Statistical analyses suggested a positive relationship between perceived well‐being and physical training between the experimental and control group.Conclusions This positive relation supports the important role of physical training to improve perceived well‐being among older adults with intellectual disability.

Trends in the number of Arabs with intellectual disability in residential care in Israel 1998-2006

Life expectancy for persons with intellectual disability has increased over the past 100 years, and today is closer to the life expectancy of the general population (except for Down syndrome). In this study, we looked at trends in the numbers of Arab persons with intellectual disability living in residential care centers in Israel. Analysis of annual questionnaires to the medical clinics in all residential care centers for the period 1998-2006 revealed that the Arab population had increased from 749 to 921 persons in 13 residential care centers (13.5% of the total residential care population). Of the 921 persons in 2006, 58 were children aged 0-9 years and 260 were aged 10-19 years, with the majority having severe or profound intellectual disability. The increase in the number over time can been seen as a longer life expectancy in this population; the lower than expected numbers in residential care can be seen as a result of children staying at home with their families for a longer time than in the Jewish population.

National survey 2000 on medical services for persons with intellectual disability in residential care in Israel

Article National survey 2000 on medical services for persons with intellectual disability in residential care in Israel was published on January 1, 2007 in the journal International Journal on Disability and Human Development (volume 6, issue 1).

National survey 2001 on medical services for persons with intellectual disability in residential care in Israel

National survey 2001 on medical services for persons with intellectual disability in residential care in Israel

Do social information‐processing models explain aggressive behaviour by children with mild intellectual disabilities in residential care?

This study aimed to examine whether the social information-processing model (SIP model) applies to aggressive behaviour by children with mild intellectual disabilities (MID). The response-decision element of SIP was expected to be unnecessary to explain aggressive behaviour in these children, and SIP was expected to mediate the relation between social schemata and aggressive behaviour. SIP and aggressive behaviour of 130 10- to 14-year-old children with MID in residential care were assessed. The fit of various SIP models was tested with structural equation modelling. The response-decision process was found not to be necessary to explain aggressive behaviour. Social schemata were indirectly related to aggressive behaviour with aggressive response generation as mediating variable. Implications for SIP theory and intervention are discussed.