Health knowledge and expected outcomes of risky behaviour: a comparative study of non-disabled adolescents and young people with intellectual and physical disabilities

Research exploring the physical health needs of people with intellectual disabilities is increasing. Unfortunately, first hand accounts from young people with intellectual disabilities remain largely absent. This is despite the fact that many of these individuals, albeit to a lesser extent than their non-disabled peers, are engaging in behaviours that can have a potentially negative impact on their health status (poor dietary habits, excessive alcohol consumption, and risky sexual behaviour). While knowledge alone does not always result in the adoption of healthier behavioural choices, it is an important prerequisite if young people are too keep themselves safe. In addition, understanding what young people know about health is pivotal to the formulation and development of appropriate education programmes and services. The limited research that does exist suggests that young people with intellectual disabilities have low levels of health knowledge, particularly in relation to sexual health and sexuality. Whereas public health messages are widely available concerning topics such as healthy eating and alcohol, information regarding sexual health is less accessible, owing to it being a private area of people’s lives. Much of our social/sexual development is largely experiential and gained through informal routes, such as interacting with peers. Yet the social networks of young people with intellectual disabilities may be compromised, which could partly account for the low levels of sexual knowledge reported. In support of this, sexual knowledge is also limited in young people with physical disabilities, another socially excluded group. Thus, the aim of this thesis is to further our understanding of how key features of social exclusion - impoverished social networks and access to sources of health information and experience - may impact upon young people with disabilities’ knowledge, attitudes and behaviour in relation to healthy eating, alcohol, pregnancy/contraception and HIV/AIDS. A substantial part of the research process was concerned with the development and piloting of appropriate methods with which to address these aims. Through structured and semi-structured questionnaires and vignette-based methodology, data from over 100 young people, aged 16-25, has been analysed and interpreted. Three groups of young people took part in the study, those with i) Intellectual disabilities (ID), ii) Physical disabilities (PD), and iii) typically developing, non-disabled (ND). With regards to health knowledge, the ID group had the poorest scores on the healthy eating and alcohol scales. However, the largest differences between the groups were related to health issues considered to be more personal and private, such as pregnancy and contraception, with both groups of young people with disabilities having lower levels of sexual health knowledge than their non-disabled peers. Thus, deficits in sexual knowledge did not just appear to be the result of the ID group’s cognitive deficits. Moreover, content analyses of open-ended questions on the questionnaire showed that all three groups held a surprising number of misconceptions about sexuality. It was also notable that young people with ID reported discussing sexual issues with friends and family less frequently than their non-disabled peers and reported being more reliant upon formal sources of sex education, such as that received through school or college. In addition, when participants with intellectual and physical disabilities were asked about how others would react to them drinking excessive amounts of alcohol and being open to a possible sexual encounter, using vignettes, they anticipated more negative attitudes from their friends for engaging in these potentially risky behaviours then their non-disabled peers. Although the majority of young people with disabilities also reported that their parents would disapprove of their actions, in contrast to their non-disabled peers, most of the young people with disabilities said that their parents’ views would matter to them. This research has highlighted the importance of people’s unique learning and socialisation experiences in shaping not only their health knowledge, but also their attitudes and beliefs. A number of implications for health education and for professionals working with both individuals with disabilities and their families are outlined. New avenues for research are also suggested

Health knowledge and the impact of social exclusion on young people with intellectual disabilities

Background: Cognitive impairments are often assumed to underlie individuals’ difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. Method: The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. Results: The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non-disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. Conclusions: The findings suggest social exclusion may contribute to young people with intellectual disabilities’ poorer knowledge of pregnancy and contraception. The results have implications for intervention

Sexual understanding and development of young people with intellectual disabilities: mothers' perspectives

Developing sexual identity and understanding are vital aspects of growing up. Misunderstandings about sexuality can cause distress and vulnerability. Families may play a more significant role in supporting the sexual development of their children with intellectual disabilities but there has been little research concerning parents' perspectives. The proposed study will compare mothers' attitudes and experience of dealing with the sexual development of their offspring, aged between 16 and 21 years of age, with and without intellectual disabilities. The first phase of the research will be a qualitative investigation of mothers who have a child with an intellectual disability and a similarly aged same sex sibling without a disability. Semi-structured interviews will be used to explore the similarities and differences of dealing with the needs of their two offspring. A survey will be used in the second phase of the study, where the views of (30) mothers of young people with intellectual disabilities and a second group of (30) mothers of non-disabled young people will be compared. It is hoped that the insight into mothers' views will help with the provision of sensitive support to families, and help schools, colleges and health professionals to work more effectively in partnership with them

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 o

Positive PsychoTherapy in ABI Rehab (PoPsTAR):A pilot randomised controlled trial

Psychological distress is common following acquired brain injury (ABI), but the evidence base for psychotherapeutic interventions is small and equivocal. Positive psychotherapy aims to foster well-being by increasing experiences of pleasure, engagement and meaning. In this pilot trial, we investigated the feasibility and acceptability of brief positive psychotherapy in adults with ABI and emotional distress. Participants were randomised to brief positive psychotherapy plus usual treatment, or usual treatment only. Brief positive psychotherapy was delivered over eight individual out-patient sessions, by one research psychologist. A blinded assessor administered the Depression Anxiety Stress Scales (DASS-21) and the Authentic Happiness Inventory (AHI) at 5, 9 and 20 weeks post-baseline. Of 27 participants randomised (median age 57; 63% male; 82% ischaemic stroke survivors; median 5.7 months post-injury), 14 were assigned to positive psychotherapy, of whom 8 completed treatment. The intervention was feasible to deliver with excellent fidelity, and was acceptable to participants. Retention at 20 weeks was 63% overall. A full-scale trial would need to retain n = 39 per group to end-point, to detect a significant difference in change scores on the DASS-21 Depression scale of 7 points (two-tailed alpha = .05, power = .80). Trials including an active control arm would require larger sample sizes. We conclude that a full-scale trial to investigate efficacy is warranted

Health knowledge and the impact of social exclusion on young people with intellectual disabilities

Background: Cognitive impairments are often assumed to underlie individuals’ difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. Method: The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. Results: The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non-disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. Conclusions: The findings suggest social exclusion may contribute to young people with intellectual disabilities’ poorer knowledge of pregnancy and contraception. The results have implications for intervention

Neurodevelopmental outcome at 5 years of age after general anaesthesia or awake-regional anaesthesia in infancy (GAS): an international, multicentre, randomised, controlled equivalence trial

Background: In laboratory animals, exposure to most general anaesthetics leads to neurotoxicity manifested by neuronal cell death and abnormal behaviour and cognition. Some large human cohort studies have shown an association between general anaesthesia at a young age and subsequent neurodevelopmental deficits, but these studies are prone to bias. Others have found no evidence for an association. We aimed to establish whether general anaesthesia in early infancy affects neurodevelopmental outcomes. Methods: In this international, assessor-masked, equivalence, randomised, controlled trial conducted at 28 hospitals in Australia, Italy, the USA, the UK, Canada, the Netherlands, and New Zealand, we recruited infants of less than 60 weeks' postmenstrual age who were born at more than 26 weeks' gestation and were undergoing inguinal herniorrhaphy, without previous exposure to general anaesthesia or risk factors for neurological injury. Patients were randomly assigned (1:1) by use of a web-based randomisation service to receive either awake-regional anaesthetic or sevoflurane-based general anaesthetic. Anaesthetists were aware of group allocation, but individuals administering the neurodevelopmental assessments were not. Parents were informed of their infants group allocation upon request, but were told to mask this information from assessors. The primary outcome measure was full-scale intelligence quotient (FSIQ) on the Wechsler Preschool and Primary Scale of Intelligence, third edition (WPPSI-III), at 5 years of age. The primary analysis was done on a per-protocol basis, adjusted for gestational age at birth and country, with multiple imputation used to account for missing data. An intention-to-treat analysis was also done. A difference in means of 5 points was predefined as the clinical equivalence margin. This completed trial is registered with ANZCTR, number ACTRN12606000441516, and ClinicalTrials.gov, number NCT00756600. Findings: Between Feb 9, 2007, and Jan 31, 2013, 4023 infants were screened and 722 were randomly allocated: 363 (50%) to the awake-regional anaesthesia group and 359 (50%) to the general anaesthesia group. There were 74 protocol violations in the awake-regional anaesthesia group and two in the general anaesthesia group. Primary outcome data for the per-protocol analysis were obtained from 205 children in the awake-regional anaesthesia group and 242 in the general anaesthesia group. The median duration of general anaesthesia was 54 min (IQR 41–70). The mean FSIQ score was 99·08 (SD 18·35) in the awake-regional anaesthesia group and 98·97 (19·66) in the general anaesthesia group, with a difference in means (awake-regional anaesthesia minus general anaesthesia) of 0·23 (95% CI −2·59 to 3·06), providing strong evidence of equivalence. The results of the intention-to-treat analysis were similar to those of the per-protocol analysis. Interpretation: Slightly less than 1 h of general anaesthesia in early infancy does not alter neurodevelopmental outcome at age 5 years compared with awake-regional anaesthesia in a predominantly male study population