Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome.

BACKGROUND: The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. METHOD: Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. RESULTS: Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of 'want?' Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. CONCLUSIONS: The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.

Can a mindfulness-informed intervention reduce aggressive behaviour in people with intellectual disabilities? Protocol for a feasibility study.

BACKGROUND: Approximately 10-20 % of adults with intellectual disabilities engage in challenging behaviours such as aggression, destructiveness, and self-injury, which are often accompanied by feelings of anger. The inability to manage anger can reduce quality of life. For example, aggression is a strong predictor of out-of-area placements and is a risk variable for abuse. Recent research suggests that mindfulness-based therapies (specifically, Singh's Soles of the Feet meditation) can help people with intellectual disabilities manage angry emotions, with resultant reductions in challenging behaviour. However, previous research has been single-case design studies, and no group studies have been published with people with intellectual disabilities and aggressive behaviour. METHODS/DESIGN: For this feasibility study, a UK protocol will be developed for use by health professionals within National Health Service (NHS) Intellectual Disability (ID) teams, based upon Singh's Soles of the Feet manual. Twenty adults with intellectual disabilities and identified problems with anger control will be recruited and six sessions will be delivered by a trained ID clinician. The study will monitor participant's aggressive behaviour, health-related quality of life, anxiety, depression, and use of support services (medication, hospital appointments etc.). These will be measured at three time points: (1) Baseline (within 2 weeks prior to the first session of the intervention), (2) 2 months post-baseline, and (3) 6 months post-baseline. Qualitative interviews will be conducted with participants, their carers, and the therapists who delivered the intervention. In order to help design an economic evaluation alongside a future full trial, we will cost the intervention and test the acceptability and validity of health economics measures to record resource use and health-related quality of life outcomes. DISCUSSION: The data from this study will inform the feasibility of the project protocol and intervention, which will help develop future research and to determine whether a larger, randomised controlled trial with concurrent economic evaluation is feasible. TRIAL REGISTRATION: UKCERN: 16743.

Parenting and the behavior problems of young children with an intellectual disability: concurrent and longitudinal relationships in a population-based study.

We examined parenting behaviors, and their association with concurrent and later child behavior problems. Children with an intellectual disability (ID) were identified from a UK birth cohort (N  =  516 at age 5). Compared to parents of children without an ID, parents of children with an ID used discipline less frequently, but reported a more negative relationship with their child. Among children with an ID, discipline, and home atmosphere had no long-term association with behavior problems, whereas relationship quality did: closer relationships were associated with fewer concurrent and later child behavior problems. Increased parent-child conflict was associated with greater concurrent and later behavior problems. Parenting programs in ID could target parent-child relationship quality as a potential mediator of behavioral improvements in children.

Child behavior problems and parental well-being in families of children with autism: the mediating role of mindfulness and acceptance.

Few research studies have explored how the level of a child's behavior problems leads to psychological distress in parents of children with autism. The authors explored whether psychological acceptance and mindfulness mediated this relationship between child behavior and parental distress. Seventy-one mothers and 39 fathers of children with autism participated, by reporting on their own positive and negative psychological well-being and their child's behavior problems. Psychological acceptance was found to act as a mediator variable for maternal anxiety, depression, and stress, and for paternal depression. General mindfulness and mindful parenting had significant mediation effects for maternal anxiety, depression, and stress. These results contribute to evidence that mindfulness and acceptance may be important parental psychological processes, with implications for parent support.

Social behavior and characteristics of autism spectrum disorder in Angelman, Cornelia de Lange, and Cri du Chat syndromes.

We evaluated autism spectrum disorder (ASD) characteristics and social behavior in Angelman (AS; n  =  19; mean age  = 10.35 years), Cornelia de Lange (CdLS; n  =  15; mean age  = 12.40 years), and Cri du Chat (CdCS, also known as 5 p-syndrome; n  =  19; mean age  =  8.80 years) syndromes. The proportion of individuals meeting the ASD cutoff on the Social Communication Questionnaire was significantly higher in the AS and CdLS groups than in the CdCS group (p < .01). The groups demonstrated divergent social behavior profiles during social conditions in which adult availability, adult familiarity, and social demand were manipulated. Social enjoyment was significantly heightened in AS, whereas social approaches were heightened in individuals with CdCS. Social motivation, social communication, and enjoyment were significantly lower in CdLS. The findings highlight the importance of detailed observation when evaluating ASD and social behavior in genetic syndromes.

Sexuality and sex education of adolescents with intellectual disability: mothers' attitudes, experiences, and support needs.

Few studies have considered families' views about adolescents' sexual development. The authors compared attitudes and behaviors of mothers of young people with (n = 30) and without intellectual disability (n = 30). Both groups placed similar importance on dealing with their children's developing sexuality and were similarly confident in doing so. Mothers of young people with intellectual disability held more cautious attitudes about contraception, readiness to learn about sex, and decisions about intimate relationships. Mothers expressed concerns about their children with intellectual disability and sexual vulnerability. They had also spoken about fewer sexual topics with their children and began these discussions when their children were older. The findings can inform more sensitive supports and materials to help families deal with the sexual development of their offspring.