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AbstractBackgroundResearch into Rett syndrome has included various medical interventions. Non‐medical interventions are relatively under‐researched. Recent technological communication intervention advances have contributed to the evidence base in Rett syndrome.MethodThe Embase, PsycINFO and MEDLINE were systematically searched for peer‐reviewed papers describing non‐medical interventions for Rett syndrome. All identified papers were evaluated for methodological quality.ResultsThirteen studies of adequate methodological quality were reviewed (acrossN = 60 participants). Interventions were primarily communication interventions including music, assistive technology, augmentative and alternative communication strategies, attentional training and cognitive rehabilitation training. All studies reported positive outcomes across communication, quality of life, brain stem activity, physical fitness and a reduction in stereotyped behaviour. However, methodological challenges to generalizability, standardization, lack of follow‐up and/or small‐N samples were common.ConclusionsThe review highlights the paucity of high‐quality research. Future research is needed to build on current research and improve validity and generalizability of interventions.

ObjectivesThe use of pharmacological interventions to manage challenging behaviour displayed by adults with intellectual disabilities remains controversial, with current clinical guidelines in the United Kingdom advocating the use of less invasive psychological interventions. This exploratory study aimed to discover what views and beliefs are held by a sample of NHS professionals who provided care and treatment to adults with learning disabilities, about the factors that are influential in the clinical decision‐making process, surrounding the prescription of psychotropic medication, to manage challenging behaviour.MethodsQ methodology was used to elucidate the factors considered influential in the clinical decision‐making process, surrounding the prescription of medication to manage challenging behaviour. 55 participants from a range of services across the north–west of England performed a 104 statement Q‐sort task.ResultsPrinciple component factor analysis with varimax rotation was performed on the 55 completed Q sorts. This revealed a four factor solution, accounting for 44% of the variance in the data. The factors were interpreted and discussed under the following headings: 'High‐quality safe ethical practice', Risk is a rationale for reactive prescribing', 'Pragmatic management' and 'Contextual issues'.ConclusionsThe study demonstrated that Q methodology is a useful tool for identifying subjective viewpoints held by a range of professionals, with regard to the factors that influence the clinical decision‐making process surrounding the prescription of medication. The study suggests that services need to identify the wider contextual factors, which are barriers, to the use of less invasive psychological interventions.

Background  Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated.Materials and methods  A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used:

 Control (n = 34) – consent information was presented followed by the questionnaire.
 Section (n = 34) – consent information was broken into sections and the appropriate questions were asked following each section.
 Photograph (n = 34) – consent information was accompanied by six colour photographs, followed by the questionnaire.

Participants also completed measures of memory ability, verbal ability and non‐verbal problem‐solving ability.Results  Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent.Conclusions  The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.

BackgroundThe Manchester Attachment Scale–Third party observational measure (MAST) was developed to assess secure attachment style for adults with intellectual disabilities. The psychometric properties of theMASTwere examined.Materials and MethodsProfessional carers (N = 40) completed theMASTand measures related to the construct of attachment theory [Edward Zigler‐Yale Personality Questionnaire (EZPQ), Emotional Rating Scale (ERS) and the Learning Disability Casemix Scale (LDCS)] regarding individuals with an intellectual disability (N = 57). Individuals with an intellectual disability (N = 14) completed the Self‐report Assessment of Attachment Security (SRAAS).ResultsTheMASTwas found to have good internal consistency, test–retest reliability and convergent validity.MASTscores were negatively correlated with level of intellectual disability and challenging behaviour (CB) as measured byLDCS.ConclusionsSupport was provided for the reliability and validity of theMASTand a relationship between attachment security, level of intellectual disability andCB. The results of the study and implications of attachment theory for service provision are discussed.

Background  This study assessed whether a Learning Disability Service should develop a specific autism strategy or provide services on a needs‐led basis.Materials and methods  An autism screening questionnaire had been used to identify individuals scoring above a cut‐off who had (n = 9) or had not (n = 15) received a formal diagnosis of autism. A sample of low scorers (n = 22) were matched to these groups. Questionnaires assessing service provision, needs (disabilities and challenging behaviour), quality of life and knowledge of autism were sent to relatives of individuals living at home or key‐workers for those living in supported housing.Results  The high scoring groups had similar levels of needs. Those diagnosed with autism received more services in total while the high scoring group without autism diagnoses scored significantly lower on quality of life. Although these differences were not maintained when level of disability was taken into account, it appeared that there was some level of unmet need in the high scorers without autism diagnoses group.Conclusions  It appeared that resources should be targeted at identifying and addressing the specific needs of individuals presenting with autistic spectrum difficulties.

Background Self‐injurious behaviour (SIB) is among the most serious problems faced by intellectual disability services. It is very difficult to treat and can become a chronic problem.Method Information on a number of variables was collected through a survey of service‐users identified as displaying SIBs. Clinical opinion and a literature review guided the selection of potential predictors of continued SIB. Univariate statistical analyses were used to investigate associations between continued SIB and each of the variables identified. Variables shown to have a significant association with continued SIB were subjected to a multivariate analysis to isolate those variables that still predicted continued SIB once the influence of the others had been accounted for.Results Two factors, self‐biting and verbal ability, were found to independently predict continued SIB.Conclusion The results have implications for intellectual disability services, in terms of the importance of multidisciplinary team working, training and guidelines for problem management.