JARID
Journal of Applied Research in Intellectual Disabilities
  • The Application of the Theory of Planned Behaviour to Diet in Carers of People with an Intellectual Disability
    Background The utility of the theory of planned behaviour (TPB) in predicting the intentions of care staff to encourage healthy eating behaviour in those they supported was examined.Method A quantitative, within-participant, questionnaire based design was used with 112 carers to assess the performance of two TPB models. The first contained the variables: attitude, subjective norm and perceived behavioural control. The second had additional variables of self efficacy and self identity.Results Model 1 accounted for 31% of the variance with all three variables being significant predictors. Adding variables increased the overall predictive power of the model by 4%, but resulted in a reduction in the predictive power of the individual variables.Conclusion The results suggests the TPB is a useful model for predicting carer intentions in relation to the diet of those they support, with their perceptions of the attitudes of others towards healthy eating being a key influential factor. Ways in which this may inform interventions to improve the overall health of people with intellectual disabilities are discussed.

  • Assessment of Prevalence of Persons with Down Syndrome: A Theory-based Demographic Model
    Background The Netherlands are lacking reliable empirical data in relation to the development of birth and population prevalence of Down syndrome. For the UK and Ireland there are more historical empirical data available. A theory-based model is developed for predicting Down syndrome prevalence in the Netherlands from the 1950s onwards. It is likewise applied to Ireland and the UK for the purpose of validation. Furthermore, a prediction to 2050 is constructed.Materials and Methods Maternal age births data in the general population, maternal age related risk of Down syndrome, data on selective terminations of Down syndrome pregnancies and mortality rates (from 35 studies from the 1930s until today) were obtained to create this model.Results For the Netherlands, nowadays birth prevalence is estimated at 14 per 10 000 with around 275 total annual births. The impact of selective abortion is lower than in the UK. Present Dutch Down syndrome population prevalence is estimated, according to this theory-based model, at 7.7 per 10 000 and the grand total at 12 600 individuals. The prevalence of 'older' persons with Down syndrome (over 40 years of age) in the Netherlands will reach a peak in 2010, a doubling compared to 1990, implying an increased demand on medical care and counselling. Validity of this theory-based model was examined by comparison with relevant available empirical data from the three countries. The model shows a good fit with historical empirical research, notably four UK and two Irish population prevalence studies and eight birth prevalence studies.Conclusions A theory-based model for Down syndrome prevalence provides supplementary data in situations with a lack of empirical material and can be used for understanding and predicting long-term developments.

  • The Chronicity of Self-Injurious Behaviour: A Long-Term Follow-Up of a Total Population Study
    Background Self-injurious behaviour (SIB) is a relatively common problem for people with intellectual disabilities and it is known to be associated with various risk markers, such as degree of disability, sensory impairments, and autism (McClintock et al. 2003). Less is known about its long-term course however.Method The present study was conducted to examine the quality of life and changes in behaviour for a cohort of 49 people with intellectual disabilities and SIB who were all part of a previous total population study conducted in the south of England by Oliver, Murphy and Corbett (1987). Assessment tools used in the original study, and an additional quality of life measure, the Life Experience Checklist (Ager, 1990), were carried out with informants in the participant's homes or places of day activity.Results The results show that 84% of the sample continued to self-injure nearly 20 years on, with no significant mean changes in number of topographies or severity of SIB across the group. No one was living in hospital in this study (cf. many individuals in the first survey) but for those who had moved out of hospital, their SIB had not reduced. More people were receiving psychological treatment; more were also receiving anti-convulsant and anti-psychotic medications, though polypharmacy had reduced somewhat. The number of people accessing full-time day activities had decreased substantially, with 44% of people only accessing structured daily activities for 2½ days per week or less.Conclusions The results of the study add to the growing evidence of extreme chronicity for SIB and the relative lack of impact of treatment for people in whom self-injury has become well-established. They imply that early intervention is essential if such behaviour is to be eliminated long term.

  • Ambulatory Care Sensitive Conditions in Persons with an Intellectual Disability – Development of a Consensus
    Background There is evidence that the primary care provided for persons with an intellectual disability living in the community has been inadequate. Hospitalization rates for ambulatory care sensitive (ACS) conditions are considered an indicator for access to, and quality of, primary care. The objective of this research was to identify ACS conditions that are applicable to persons with an intellectual disability.Materials and Methods We developed and distributed a survey questionnaire using a modified Delphi process. The participants were clinicians with experience working with people with an intellectual disability.Results All eleven conditions that were considered ACS for the general population met the three primary inclusion criteria. Study participants suggested five other conditions of which four met the primary criteria: constipation, gastroesophageal reflux, epilepsy, and schizophrenic disorders.Conclusions There is a very high degree of agreement as to what constitutes an ACS condition for persons with an intellectual disability. The final list has the potential to be used with other populations with cognitive disabilities and outside of Canada.

  • Understanding Quality of Working Life of Workers with Intellectual Disabilities
    Background This paper examines the perceived quality of working life of workers with intellectual disabilities. Specifically, this paper looks at participants' perceptions in relation to perceived job demands and resources and their impact on experienced job satisfaction.Methods In this cross-sectional survey, 507 workers with intellectual disabilities, employed in either sheltered workshops or supported employment, completed questionnaires on the quality of working life through semi-structured interviews.Results Regression analyses showed that perceived low job demands and elevated social support from coworkers and supervisors predicted higher quality of working life.Conclusions Common organizational psychology measures can be successfully used with this population to assess quality of working life. This study confirms the multidimensional nature of quality of working life, and the impact of job demands and available resources on perceived satisfaction with job for workers with intellectual disabilities.

  • Williams Syndrome: Daily Challenges and Positive Impact on the Family
    Background Despite the distinctive physical, cognitive, personality and behavioural characteristics associated with Williams syndrome, few studies to date have examined parental experiences of raising a child with this genetic syndrome.Methods This explorative pilot study employed predominantly qualitative methodologies via face-to-face semi-structured interviews with parents.Results Participants' responses indicated a variety of daily challenges faced by parents of a person with Williams syndrome. Parents also noted challenges unique to this aetiological group that were derived from the oversensitive and highly empathetic nature of the person with Williams syndrome. Parental perceptions relating to the positive impact that a person with Williams syndrome can have on the family were also reported.Discussion While some of the findings regarding the daily challenges faced by families with a person with WS appear to be similar to the experiences of families who have children with other genetic syndromes and developmental disabilities, the findings indicate that certain daily challenges may also be unique to parents of this aetiological group. In addition, the present study makes a valuable contribution to the research literature focusing on the positive aspects of raising a child with a disability. Future theoretical and practical applications of the present study are also suggested.

  • Predicting Change in Emotional and Behavioural Problems during Inpatient Treatment in Clients with Mild Intellectual Disability
    Background Little is known about client characteristics that are related to outcome during inpatient treatment of adults with mild intellectual disability (ID) and severe behavioural problems.Method We explored variables that were related to a change in behavioural problems in 87 individuals with mild ID during inpatient treatment in facilities for adults with mild ID and severe behavioural problems. Emotional and behavioural problems were measured using the Adult Behaviour Checklist (ABCL) and relationships between a change in ABCL total scores and other variables (e.g. age, adaptive skills, and presence of personality disorder) were explored.Results For the sample as a whole, we found a decrease in emotional and behavioural problems within a 1-year period of inpatient treatment (following a 3-month observation and diagnostic period). Male clients, clients without a personality disorder classification, and/or clients who showed more improvement in adaptive and social functioning, showed a larger decrease in emotional and behavioural problems than other clients. Gender and personality disorder classification appeared to be the most important predictive factors.Conclusion Clients with mild ID and severe behavioural problems may benefit from inpatient treatment. Those with a personality disorder and/or female clients may benefit less from such a program. Results of such studies may have consequences for service provision and management. Limitations of this study were the lack of data on the quantity and quality of the treatment package and unknown reliability and validity of Axis-I and personality disorder diagnoses.

  • Patterns of Risk in Adult Protection Referrals for Sexual Abuse and People with Intellectual Disability
    Background Adult protection monitoring data held by local authorities in England provide opportunities to examine referrals for alleged sexual abuse for people with intellectual disability to identify patterns of risk.Methods Adult protection monitoring data collected by two local authorities was analysed, with referrals for alleged sexual abuse compared to referrals for other types of abuse for people with intellectual disability and the wider research evidence.Results Over a fifth of referrals related to alleged sexual abuse, with two-thirds of these for women. Sexual abuse was confirmed in just over a quarter. Similarities were found with the findings of Brown et al. (Mental Handicap Research, 8, 1995:3) across a range of key characteristics.Conclusions Adult protection monitoring data can be used to provide risk management information on the sexual abuse of people with intellectual disability. To maximize its potential, detailed case characteristics need to be included and attention given to improving comparability between databases.

  • Knowledge of Mental Capacity Issues in Community Teams for Adults with Learning Disabilities
    Background The aim of this study was to evaluate the state of knowledge of mental capacity issues among health and social services professionals working in community teams supporting people with learning disabilities.Methods A structured interview was constructed around three scenarios, based on actual cases, concerning a financial/legal issue, a health issue and a relationships issue, as well as a set of ten 'true/false' statements. The interview aimed to elicit respondents' understanding in relation, primarily, to assessment of capacity and best-interests decision making. Forty interviews were conducted (two social workers and two health professionals from each of ten community teams). Most participants had attended training on the Mental Capacity Act (2005).Results Performance of social services and health staff was similar throughout. Fourteen areas of concern were identified where there appeared to be significant gaps in knowledge.Conclusions Participants, particularly those who had experience of dealing with mental capacity issues, had good insight into the extent of their knowledge, and most participants said that the interview had made them aware of further training needs.

  • The Impact of Autism or Severe Challenging Behaviour on Lifestyle Outcome in Community Housing
    Background The triad of impairments characteristic of autistic spectrum disorders and severe challenging behaviours are reasonably common among adults with intellectual disabilities. The aim was to investigate whether they had an impact on lifestyle among such adults living in staff-supported community housing.Methods Data were collected on the adaptive and challenging behaviour, social impairment, attention from staff, social and community activities, household participation and engagement in activity of 427 adults living in 146 staffed houses. Presence of the triad of impairments characteristic of autistic spectrum disorders was based on items from the Disability Assessment Schedule. Categorization of severe challenging behaviour was based on scores on two domains of the Aberrant Behavior Checklist. Participants were divided into groups with and without the relevant characteristics and sub-samples selected which were matched on Adaptive Behavior Scale scores. Lifestyle outcomes were compared. In addition, multiple regression was used to examine the association between lifestyle outcomes and the presence of autistic spectrum disorders or severe challenging behaviours after controlling for other participant characteristics.Results After controlling for adaptive behaviour, there were no significant differences between those with and without the triad of impairments. People with severe challenging behaviour received significantly more staff attention but were similar in terms of social, community and household activities. The regression analyses found small negative associations between Aberrant Behavior Checklist scores and variety of social and community activities and household participation after controlling for Adaptive Behavior Scale scores.Conclusions Results support previous findings that low adaptive behaviour has a negative impact on lifestyle outcome. Compared with this, the presence of autistic spectrum disorders or severe challenging behaviour has little effect.

  • Factors Relating to Staff Attributions of Control Over Challenging Behaviour
    Background Previous research has suggested that severity of intellectual disability (ID) and topography of behaviour may influence staff causal attributions regarding challenging behaviour. Subsequently, these causal attributions may influence helping behaviours. This study investigated the relationship between attributions of control over challenging behaviour and individual and organizational factors.Methods A cross-sectional survey using a between-subjects natural groups design was employed. Care staff and managers completed measures to examine the relationship between staff attributions of control over challenging behaviour and client-related variables, staff-related variables and functioning of the organization.Results Staff attributed challenging behaviour as being less under personal control if the organization was of better quality. Staff attributions of control over challenging behaviours were lower if staff displayed positive attitudes towards the client, the physical and social environment was appropriate and the overall approach to delivering care seemed well-structured. There was no relationship between staff attributions of control and ability of the individual or the overall level of challenging behaviour. However, with respect to specific topographies (i.e. physically aggressive and self-injurious behaviour) there were different profiles of causal attributions made.Discussion Organizational factors, staff behaviour and the topography of challenging behaviour can each influence the attributions of control that staff make. Any interventions that seek to increase the helping behaviour of staff through manipulation of the attributions that they make need to consider both individual factors (topography of behaviour) and environmental factors (staff behaviour and the quality of the service and organization).

  • Psychometric Comparison of the Functional Assessment Instruments QABF, FACT and FAST for Self-injurious, Stereotypic and Aggressive/Destructive Behaviour
    Background Psychometric properties of three functional assessment rating scales were compared for three types of target behaviours [self-injurious behaviour (SIB), stereotypic behaviour and aggressive/destructive behaviour].Materials and method The Questions about Behavioural Function (QABF), the Functional Assessment for Multiple Causality (FACT) and the Functional Analysis Screening Tool (FAST) were administered twice by two raters to 130 adults with intellectual disability (total of 29 raters).Results and conclusions The reliability of the FACT and the QABF for estimates across all three behaviours was acceptable to good. Mean inter-rater reliability intra-class correlations across two administrations ranged from 0.63 to 0.68 for the QABF and from 0.65 to 0.78 for the FACT. Mean test-retest reliability for the QABF ranged from 0.81 to 0.82 and for the FACT from 0.86 to 0.87. Internal consistency across the subscales ranged from 0.89 to 0.96 for the QABF and from 0.92 to 0.96 for the FACT. The FAST had generally poorer reliability scores. Convergent and discriminant validity (Spearman [rho]) were better between FACT and the QABF than between the FAST and the other two instruments.

  • Effectiveness of Group Cognitive-Behavioural Treatment for Men with Intellectual Disabilities at Risk of Sexual Offending
    Background For non-disabled men, group cognitive-behaviour therapy is a successful form of treatment when men have committed sexual offences. However, men with intellectual disabilities and sexually abusive behaviour are rarely offered treatment for their sexual behaviour and little research data on the effectiveness of such treatment has been collected.Method Nine collaborating sites ran 13, 1-year long cognitive-behavioural treatment groups for men with intellectual disabilities and sexually abusive behaviour. The men came from both community and secure provision and were assessed for sexual knowledge, victim empathy and cognitive distortions before and after the group treatment. Treatment was guided by a common treatment manual.Results Forty-six men consented to take part in the research. Most men (83%) had engaged in more than one incident of sexually abusive behaviour but only 57% of the men who came for treatment were required by law to attend. Almost all the men (92%) who began treatment (and consented to take part in the research) completed treatment 1 year later, indicating considerable motivation amongst the men to get treatment for their difficulties. Over the period of treatment, the men showed statistically significant increases in sexual knowledge and victim empathy, as well as reductions in cognitive distortions. These changes were still significant at 6-month follow-up for sexual knowledge and cognitive distortions. Few men showed further sexually abusive behaviour during the 1-year period when they were attending treatment (three men) or during the 6-month follow-up period (four men). Only the presence of autistic spectrum disorders appeared to be related to re-offending (though this result should be treated with caution, given the small numbers who re-offended).Conclusions This large treatment trial provides some evidence of the effectiveness of such treatment for men with intellectual disabilities but there remains a need for a longer follow-up period and a randomized controlled trial.

  • Psychiatric in-Patients Away From Home: Accounts by People With Intellectual Disabilities in Specialist Hospitals Outside Their Home Localities
    Background This study reflects a growing concern with the placement of people with intellectual disabilities and complex mental health problems in out of area placements at a distance from their families and communities.Materials and methods We interviewed service users (n = 17) living in out of area in-patient psychiatric units using a semi-structured interview as part of a service user consultation process. The questions addressed safety and security, food, facilities, day time activities, education, opportunities for socialization, clinical, cultural and religious needs, carer involvement and access to information. Service users were also asked where they would prefer to live if they were to leave the hospital.Results Although there were some positive stories, service user responses suggested limited opportunities for engagement in therapeutic or educational experiences, for building supportive relationships with staff or other residents, for developing religious and cultural identities or for enhancing family relationships.Conclusions Whilst many of the issues raised by participants will be familiar to critics of institutional care, being placed at a distance from home is likely to put an additional strain on relationships with family members and limit opportunities to engage in practices valued by specific ethnic minorities. Commissioners and managers of community intellectual disability services should bear in mind the perspective of service users with complex mental health needs, and take seriously the drawbacks in placing individuals out of area.

  • Adult Protection of People with Intellectual Disabilities: Incidence, Nature and Responses
    Background There has been increasing recognition of the importance and extent of abuse of vulnerable adults, including people with intellectual disabilities, leading to the development of monitoring systems. This paper reports findings from one of the largest databases in the UK collected between 1998 and 2005.Method Analysis of the 1926 referrals relating to people with intellectual disabilities included description of the nature of abuse and the responses to the referrals, comparisons to those relating to other client groups and comparisons between those placed locally and those placed out-of-area.Results About one-third of all adult protection referrals related to people with intellectual disability, remaining consistent over time. However, the number of referrals increased significantly. The majority of people lived in residential care or supported living and this was reflected in the nature of the referrals [ndash] people were more likely to have been abused in the care home and by staff or service users than those without an intellectual disability. The most common type of abuse was physical abuse. Sexual abuse was more prevalent in the intellectual disability sample than in other client groups. People with intellectual disability were more likely to have experienced follow-up action, usually through more monitoring. There was a different pattern of abuse seen in those placed out-of-area.Conclusions The overall pattern of abuse is similar to that reported in earlier studies. There is some indication that residential situation and in particular being placed in a residential placement out-of-area, may be an important factor in predicting adult protection referrals.

  • Health Service Inpatient Units for People with Intellectual Disabilities and Challenging Behaviour or Mental Health Problems
    Background As institutions for people with intellectual disabilities have been replaced with community services, health care provision has developed to provide assessment and treatment, low and medium secure units for people with challenging behaviour or mental health problems. These include both public and private sector provision. Little is known about these services. The aim of this study was to describe the characteristics of the services studied and to compare the different types of service.Methods A survey was carried out of National Health Service (NHS) and independent sector (IH) health settings providing specialist inpatient services for people with intellectual disabilities. Data were collected on setting and patient characteristics, staffing and management and care processes and outcomes.Results Services were very unevenly distributed across England. There were differences between NHS and IH settings. IH assessment and treatment units were bigger, had higher occupancy and lower staff ratio. In all three types of unit, IH units had fewer visits to patients, used more seclusion, physical restraint and had more locked areas. They had more complaints in more services from users and (for assessment and treatment units and low secure units only) from relatives. In low secure units, they had more adult protection referrals. On the other hand, IH units used fewer agency staff in assessment and treatment units (though more in medium secure units) and provided more appraisals, more visits from commissioners, more consultations with GPs and dentists and more use of whistleblowing procedures by staff. A quarter of people in NHS assessment and treatment units had finished treatment but had no plan for discharge.Conclusions Further research is required to determine the reasons for differences observed between IH and NHS units. The large number of people who have finished treatment emphasizes the importance of developing housing in the community with sufficiently skilled support. The large number of patients in low secure services raises the question whether this type of service is recreating the intellectual disability institutions which government policy intends to close.

  • Hearing in Athletes with Intellectual Disabilities: The Need for Improved Ear Care
    Background The Special Olympics offer the opportunity for athletes with intellectual disabilities to participate in a range of sports at regional, national and international level. A parallel Healthy Athletes programme was introduced to ensure safety at the games but also to collect data on the health needs of those with intellectual disabilities (ID).Method This study reports on the introduction of a hearing screen for the first time at national games in Great Britain. Given the availability of free local healthcare it was unclear whether the screen would simply duplicate services already accessed locally.Results Of the 996 athletes who went though the hearing screen 40% were identified with a previously unrecognised hearing loss, 52% required medical ear care and 43% required wax removal. Despite complex competing stimuli within the screening area only 15 of the subjects were unable to complete the full screen. Local clinical services are carried out in more controlled environments therefore it is reasonable to presume that it would be possible for them to provide assessment of ear care and ongoing audiological assessments where needed. It was found that carers and sports coaches were generally unaware of the hearing needs of the athletes, in spite of the fact that they worked so closely with them.Conclusions The importance of imparting information to carers and coaches, together with the need for access to regular ear care locally is underlined in this study.

  • Hurting No-One Else's Body but Your Own: People with Intellectual Disability Who Self Injure in a Forensic Service
    Background This paper details the experiences of nine people with mild/moderate intellectual disability who self injure; looking beyond the clinical presentations in an attempt to capture the perceptions these people have of their care in a medium secure unit.Methods A phenomenological approach was used, and during in-depth interviews, the participants gave rich descriptions of their experiences of self-injury.Results The analysis of the interviews revealed four main themes; coping strategies, staff and the organizational response [ndash] therapeutic communication, close observation and looking to the future. As a coping strategy, self-injury was seen as an effective means of reducing distress [ndash] there were unique and common reasons for this distress. Common themes relating to the actions and reactions of health professionals and the organizational response were evident within all accounts.Conclusions The theoretical and clinical implications for service users are discussed.

  • Resettlement Outcomes for People with Severe Challenging Behaviour Moving from Institutional to Community Living
    Background The purpose of this study was to evaluate the quality of life consequences arising from the resettlement of adults with challenging behaviour severe enough to be deemed to require continuing healthcare from a traditional learning disability hospital to new purpose-built bungalows. The new accommodation was provided by a specialist NHS trust through special project arrangements designed to ensure that the provision of homelike accommodation in the community was coupled with 'state of the art' staff training.Methods There were 19 participants. Baseline data were collected on their adaptive and challenging behaviour and psychiatric status. Data on a variety of quality of care and lifestyle indicators were collected when the entire sample was in hospital (T1), when a minority had moved to the community, but the majority remained in hospital (T2), when the majority had moved to the community but a minority remained in hospital (T3) and at follow-up (T4), when all lived in the community.Results There were almost no areas of significant deterioration in quality of care or lifestyle outcome arising from moving to the community. The community provision was more homelike and associated with some improvement in working methods and staff contact received by participants, increased family contact, greater participant involvement in household activity and constructive activity generally and reduction in staff-reported challenging behaviour. Increases in the range and frequency of social and community activities over time were found but such increase also occurred while people remained in the hospital.Conclusions This evaluation has shown that the quality of care and lifestyle outcomes associated with new NHS community settings for adults with learning disabilities and severe challenging behaviour assessed as requiring continuing healthcare were generally equivalent or superior to previous hospital levels. In this, findings were similar to other more general deinstitutionalisation studies. Certain improvement over time was found within the follow-up period studied. Further follow-up may be relevant as developing the desired working culture among staff from an institutional background may take longer than was given within the length of this study.

  • Menopausal Experiences of Women with Intellectual Disabilities
    Background Little is known about the menopause in women with intellectual disabilities (ID) save that its onset is earlier than in the general population, and earlier still in women with Down's syndrome (DS). This study directly explored menopausal experiences in women with ID, both with and without DS, with the aim of identifying levels of knowledge of the menopause and of its health and reproductive implications. Methods Information was collected from 45 women with ID (17 DS, 28 non-DS; age 35[ndash]65 years) using a semi-structured interview.Results Menopausal experiences of the women with and without DS were very similar. Most of the women were unaware of menopause-associated changes in their body and few understood why they menstruated. Difficulties in disentangling behavioural consequences of menopausal symptoms from behaviours arising from other causes were evident. A need for better health education training and more accessible health resources was identified.Conclusions Promoting better awareness of menopause-related health issues in women with ID seems warranted. Appropriately-tailored health education materials need to be made more readily available.