The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life

Abstract

Background The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school environment to an emerging adult life that may be characterised by a wide variation in adoption of adult roles related to employment, independent living, friendships, and day activities.

Method In this study, we investigated the perspectives of 18 mothers of young adults with either Down syndrome or Rett syndrome through qualitative semistructured interviews. The International Classification of Functioning, Disability and Health (ICF) framework was used as a conceptual basis.

Results Themes that emerged included adult roles assumed during the day, accommodation, quality of life, living a “good” life, and family impact.

Conclusions In contrast with Rett syndrome, mothers of young adults with Down syndrome described more difficult pathways to attaining stability in adult roles. Environmental facilitators and barriers emerged in the area of support, relationships, services, systems, and policies.     

Behaviour problems and adults with Down syndrome: childhood risk factors

Background Studies of people with intellectual disability suggest that several individual characteristics and environmental factors are associated with behaviour disorder. To date there are few studies looking at risk factors within specific syndromes and the relationship between early risk markers and later behaviour disorder. The key aim of the study was to determine if childhood risk factors were predictors of severe behaviour disorder in young adults with Down syndrome. Materials and methods A longitudinal cohort study of 50 people with Down syndrome was assessed with the same behavioural measure used in both childhood and adult life. The early risk factors which were assessed included childhood functioning, childhood psychopathology and early family environment as determined by measures of parental mental health, quality of parental marriage and social background. Results Childhood psychopathology and functioning were associated with severe behaviour disorder in adult life whereas childhood family environment was not. Conclusions Children with Down syndrome at risk for severe behaviour disorder in adult life may be identified in childhood and appropriate interventions offered to reduce their risk.     

Social adaptive skills and psychopathology in adults with intellectual disabilities of non-specific origin and those with Down syndrome

The present study aimed to assess the psychometric proprieties of a new social adaptive skills questionnaire and examine the impact of maladaptive behaviour on social functioning in adults with ID of non-specific aetiology and those with Down syndrome.The results of an exploratory factor analysis led to the exclusion of 20 items out of 48 and yielded a four-factor structure. The Confirmatory Factor Analysis conducted on 28 remaining items confirmed a four-factor structure explaining 43% of the total variance. The results computed on the global sample (n = 567) showed a “very good” internal consistency for the global score (.89) for all four factors with a very good fit (.97). Thus, this new assessment tool presented a good conceptual validity for assessing social-adaptive skills in adults with ID. The results also showed that participants with DS (no = 92) exhibited a higher global score of social adaptive skills on three subscales (sociability, social relating and respect for social rules) compared to adults with ID of non-specific aetiology (no = 328), and presented a lower level of psychopathology problems. Although aetiology was significantly related to these group differences even after controlling for level of ID and chronological age, the general level of psychopathology fully mediated these relations.In conclusion, the regression coefficient analyses showed that the general level of psychopathology fully mediated the relationship between aetiology and social adaptive skills. A combined assessment of these dimensions should provide information about their predictive value for social functioning in ID adults and target specific remediation goals.     

A prospective analysis of life events, problem behaviours and depression in adults with intellectual disability

Background Life events have consistently been found to be associated with behaviour problems and depression among individuals with intellectual disability (ID). However, prior findings have typically been based on correlational or retrospective analyses of case files. The current study attempted to replicate prior findings from life events with concurrent data and extend them to the prospective prediction of behaviour problems and depression. The influence of impact ratings of life events was also explored. Methods Seventy‐four informants rated 104 adults with ID on measures of life events, behaviour problems and depressive symptoms. Life events were rated as having either a positive, negative or no impact on the life of the individual with ID. Measures were completed twice, at a 4‐month interval. Results Behaviour problems were both correlated with and predicted by frequency counts of life events and life events perceived as negative. However, the predictive ability depended on which measure of problem behaviour was selected. Positive life events were not associated with concurrent behaviour problems. Depressive symptoms were correlated with all life changes, but only predicted by frequency counts of life events and life events perceived as negative. Again, the predictive ability depended on which measure of depression was selected. Findings were corroborated with a group of individuals with clinical diagnoses of major depression. Conclusions Frequency counts of all life events and life events perceived as negative play a role in the development of behaviour problems and depressive symptoms among adults with ID. The results have implications for interventions for behaviour problems following a life event, and for reducing depressive symptoms for adults with mild ID.     

Service use and access in young children with an intellectual disability or global developmental delay: Associations with challenging behaviour

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics.

Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use.

Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour.

Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour).     

Factors predicting mortality in midlife adults with and without Down syndrome living with family

Background Little is known about the mortality of individuals with Down syndrome who have lived at home with their families throughout their lives. The current study evaluates the predictors, causes and patterns of mortality among co‐residing individuals in midlife with Down syndrome as compared with co‐residing individuals with ID owing to other causes. Method This paper examines mortality in 169 individuals with and 292 individuals without Down syndrome from 1988 to 2007. Dates and causes of death were obtained from maternal report, the Social Security Death Index and the National Death Index. Risk factors predicting mortality, including demographic variables, transition variables, and initial and change measures of health, functional abilities and behaviour problems, were obtained from maternal report. Results Having Down syndrome is a risk factor of mortality, net of other risk factors including older age, poorer functional abilities, worsening behaviour problems, residential relocation and parental death. The causes of death among individuals with and without Down syndrome who are in midlife and co‐residing with their families are similar, and are most commonly due to cardiovascular or respiratory problems. Conclusions The findings indicate that midlife adults with Down syndrome who co‐reside with their families generally exhibit similar causes of mortality as do midlife adults with intellectual disability owing to other causes, but show an elevated risk of mortality in midlife net of other variables, such as age and changes in functional abilities and behaviour problems.     

Performance of young people with Down syndrome on the Leiter-R and British picture vocabulary scales

Background The British picture vocabulary scales (BPVS-II) and the Leiter international performance scales (Leiter-R), both restandardised in 1997, are often used in experimental studies to match individuals with intellectual impairment. Both provide a brief measure of mental age, and cover a wide ability range using a simple format. The BPVS-II assesses verbal comprehension and the Leiter nonverbal abilities. The issue is which to choose. People with Down syndrome (DS), for example, have particular problems in language and so the BPVS may provide an underestimation of ability. Method The present study investigated this by comparing the performance of 46 young people with DS (21 females, 25 males, mean age 19 years 10 months) on the BPVS-II (verbal mental age – VMA) and the Leiter-R brief IQ (nonverbal mental age – NVMA). Results Contrary to expectations VMAs were significantly higher than NVMAs (6 years 6 months and 5 years 2 months, respectively). There was a significant correlation of 0.61 between the VMA and NVMA, and both discriminated participants at all levels of ability. However, the Leiter-R brief IQ scores provided poor discrimination at the bottom end of the IQ range (IQ 36). Conclusion Both the BPVS-II and the Leiter-R provide mental age equivalent scores that are useful for plotting developmental progress, although absolute mental ages may differ.     

Numeracy for adults with Down syndrome: it's a matter of quality of life

Background Numeracy development is widely accepted as critical for adults in the general community which is equally the case for adults with Down syndrome. This paper reports some of the findings of a study including the research question: What is the justification for numeracy development for adults with Down syndrome? Investigating this question led to the search for a framework to support the ongoing development of numeracy. Method The research used a case study methodology. Five adults were observed and interviewed in two contexts each. The data were analyzed to identify links to the quality of life model. Results The research illustrates how a quality of life approach can be used to justify and guide the lifelong development of numeracy. Data from the case studies linked numeracy to quality of life under the principles of personal contexts, variability, life-span perspective, values, choices and personal control, perceptions and self-image. Conclusions The principles of quality of life can provide a framework for the development of numeracy in the context of adulthood and Down syndrome. Preparation for the numeracy needs of a long and satisfying adulthood should begin in early childhood, continue in schools with the teaching of underlying mathematics concepts and skills, and be modified and refined throughout adulthood by the use of a numeracy development plan. Carers and professionals interacting in the contexts need to adopt a teaching role for numeracy.