Improving allied health professionals' research implementation behaviours for children with cerebral palsy: protocol for a before-after study

BACKGROUND: Cerebral palsy is a permanent disorder of posture and movement caused by disturbances in the developing brain. It affects approximately 1 in every 500 children in developed countries and is the most common form of childhood physical disability. People with cerebral palsy may also have problems with speech, vision and hearing, intellectual difficulties and epilepsy. Health and therapy services are frequently required throughout life, and this care should be effective and evidence informed; however, accessing and adopting new research findings into day-to-day clinical practice is often delayed.

METHODS/DESIGN: This 3-year study employs a before and after design to evaluate if a multi-strategy intervention can improve research implementation among allied health professionals (AHPs) who work with children and young people with cerebral palsy and to establish if children's health outcomes can be improved by routine clinical assessment. The intervention comprises (1) knowledge brokering with AHPs, (2) access to an online research evidence library, (3) provision of negotiated evidence-based training and education, and (4) routine use of evidence-based measures with children and young people aged 3-18 years with cerebral palsy. The study is being implemented in four organisations, with a fifth organisation acting as a comparison site, across four Australian states. Effectiveness will be assessed using questionnaires completed by AHPs at baseline, 6, 12 and 24 months, and by monitoring the extent of use of evidence-based measures. Children's health outcomes will be evaluated by longitudinal analyses.

DISCUSSION: Government, policy makers and service providers all seek evidence-based information to support decision-making about how to distribute scarce resources, and families are seeking information to support intervention choices. This study will provide knowledge about what constitutes an efficient, evidence-informed service and which allied health interventions are implemented for children with cerebral palsy.

TRIAL REGISTRATION: Trial is not a controlled healthcare intervention and is not registered.

Getting In and Getting On? The Experiences of Young People with Visual Impairments and Hearing Impairments in Third-Level Education

Young disabled people continue to be under-represented throughout further and higher education settings. Drawing on Pierre Bourdieu’s social theory of habitus, capital and field, this paper explores the practices of domination and oppression that have made it difficult for young people with visual impairments and hearing impairments to participate in third-level education on the same basis as non-disabled people. Twenty young people with hearing impairments and visual impairments were interviewed about their educational experiences. In addition, 31 interviews were conducted with third-level education providers, policy-makers and non-governmental organisations. This article has two aims: firstly, to critically examine the experiences of young people with hearing impairments and visual impairments in accessing and engaging with support provisions in further and higher education settings; and secondly, to identify and explore the diversity of ways in which these young people have managed and responded to the practices they have encountered. This article emphasises the journey from ability to dis-ability that young people with hearing and visual impairments experience in their quest for educational achievement. The ambiguities of “inclusion”, “widening participation” and “support” are highlighted and critiqued for their extensive failure to challenge taken-for-granted discourses.

Substance Use Behaviours of Young People with A Moderate Learning Disability: A longitudinal analysis

Substance use behaviours of young people attending a special school are reported over a four year period from the age of 12-16 years. The paper investigated these behaviours by surveying a cohort of young people with a statement for moderate learning disabilities annually during the last four years of compulsory schooling. The findings show that these young people consistently reported lower levels of tobacco, alcohol and cannabis use compared with those attending mainstream school. No other illicit drug use was reported. The potential implications of these findings are discussed in relation to the context and timing of targeted substance education and prevention initiatives for young people with moderate learning disability attending a special school.

The mental health needs of people with a learning disability detained in police custody

Few research studies examine the prevalence or mental health needs of people with a Learning Disability (LD) detained in police custody. This paper describes the population of detainees with an LD who presented to an inner city inter-agency police liaison service during a three-year period. Two forensically trained Community Mental Health Nurses (CMHNs) screened all custody record forms (n=9014) for evidence of a mental health problem or LD. The CMHNs interviewed positively screened detainees (n=1089) using a battery of measures designed to assess mental health status, risk-related behaviour and alcohol or drug abuse. Almost one-in-ten of those interviewed (95/1089) were judged to have a possible or definite LD. Fifty-two per cent were cases on the General Health Questionnaire (GHQ) whilst 61% attained 'above threshold' Brief Psychiatric Rating Scale (BPRS) scores. The majority (63%) had a history of causing harm to others while 56 per cent had a history of self-harm. More than half (56%) regularly consumed harmful levels of alcohol while one-in-four (27%) reported abusing drugs. Higher than expected numbers of detainees have a learning disability and most have complex mental health needs. A police liaison service offers a way of identifying people with LD and connecting them with appropriate health and social care agencies.

Costing the hospital-based process of resettling people with learning disability in the community

Objectives: Much has been written about the costs and cost-effectiveness of community care for people with learning disabilities resettled from long stay hospital care. However, comparatively little has been published about the cost of hospital services relating to the preparatory process before eventual resettlement and the disengagement of formal, sustained input from hospital staff. This study describes and costs the input provided by a hospital based multi-disciplinary team into the resettlement of adults with learning disabilities, from long stay wards in Muckamore Abbey Hospital in Northern Ireland between 1996 and 1999 (n = 71).

ALCOHOL-RELATED KNOWLEDGE AND ATTITUDES IN PEOPLE WITH A MILD LEARNING-DISABILITY - THE EFFECTS OF A SENSIBLE DRINKING GROUP

Alcohol-related knowledge and attitudes in people with a mild learning disability, who were either living, or being prepared to live, in relatively independent conditions in the community, were assessed through a structured interview format. Compared with non-learning-disabled teenagers, adults and a hospitalized patient sample, alcohol-related knowledge in the people with a learning disability was found to be significantly poorer, alcohol was reported as having particularly negative effects and susceptibility to social pressure to drink alcohol was greater. A 'sensible drinking' group, taking a social skills and influences approach to alcohol education, was conducted with a subgroup of the individuals with a learning disability. The group format and methods, including in vivo sessions in a public house, are described. Follow-up evaluations suggested some significant positive changes in knowledge, attitudes and sensible drinking skills. It is concluded that this population, which is increasingly living, or being moved into, independent conditions in the community, is at least as vulnerable to social influences on alcohol use and abuse as are young people. As with young people, the usefulness of making available such alcohol-education programmes as described in this study, is discussed.

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.