A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Hidden Contradictions and Conditionality: Conceptualisations of Inclusive Education in International Law

The nature of education that children with disabilities should receive has been subject to much debate. This article critically assesses the ways in which the international human rights framework has conceptualised ‘inclusive education’. It argues that the right to education for children with disabilities in international law is constitutive of hidden contradictions and conditionality. This is most evident with respect to conceptualisations of ‘inclusion’ and ‘support’, and their respective emphases upon the extent of individual impairment or ‘deficit’ rather than upon the extent of institutional or structural deficit. It is vital that the new Committee on the Rights of Persons with Disabilities pays close attention to the utilisation of these concepts lest the Convention on the Rights of Persons with Disabilities further legitimises the ‘special needs’ educational discourse to which children with disabilities have been subject.

The Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing

Objective: Most of what we know about children with autism spectrum disorder (ASD) is based on post-diagnostic, retrospective, self-select studies. Oftentimes, there is no direct comparison between trajectories of children with ASD and children without ASD.

Methods: To circumvent both of these problems, the present secondary data analysis utilised a large-scale longitudinal general population survey of children born in the year 2000 (i.e. the Millennium Cohort Study; MCS; n=18522). Bi-annual MCS data were available from five data sweeps (children aged 9 months to 11 years of age).

Results: Pre-diagnostic data showed early health problems differentiated children later diagnosed with autism from non-diagnosed peers. Prevalence was much higher than previously estimated (3.5% for 11-year olds). Post-diagnosis, trajectories deteriorated significantly for the children with ASD and their families in relation to education, health and economic wellbeing.

Conclusion: These findings raise many issues for service delivery and the rights of persons with disabilities and their families.

The Right to Appropriate and meaningful Education for Children with ASD

This paper will explore from a ‘child’s rights perspective’ the ‘right’ of children with autistic spectrum disorder (ASD) to appropriate and meaningful education.Human ‘rights’ principles within international law will be evaluated in relation to how they have been interpreted and applied in relation to achieving this ‘right’. The International Convention of the Rights of the Child (United Nations in Convention on the rights of the child, office of the high commissioner, United Nations, Geneva, 1989) and the convention on the rights of the person with disability (United Nations in Convention on the rights of person’s with disabilities and optional protocol, office of the high commissioner, United Nations, Geneva, 2006) amongst others will be utilised to argue the case for ‘inclusive’educational opportunities to be a ‘right’ of every child on the autistic spectrum. The efficacy of mainstream inclusion is explored, identifying the position that a ‘one size fits all’model of education is not appropriate for all children with ASD.

Handbook of International Special Education:Northern Ireland

The intent of the Handbook of International Special Education is to provide a concise overview of special education services in countries across the world using the Article on Education in the United Nations Convention on the Rights of Persons with Disabilities as the analytical frame. The Handbook will provide concise, data-driven contributions from across the globe using two primary frames: the relationship between special and general education in the country and the country’s system as aligned with the Article on Education in the UN Convention on the Rights of Person with Disabilities.

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.

Lifestyle limitations of children and young people with severe cerebral palsy: a population study protocol

Aim.  This paper is a presentation of a study protocol to establish the prevalence of orthopaedic problems (hip dislocation, pelvic obliquity, spinal deformity and contractures) and their impact on pain, function, participation and health in a population of children and young people with severe cerebral palsy.

Background.  Cerebral palsy is the commonest cause of motor impairment in childhood and is associated with life-long disability. An estimated 30% of people with cerebral palsy have severe forms and are non-ambulant. Although the underlying neurological damage is not amenable to correction, many health services are dedicated to providing therapeutic and adaptive support to help people with the condition reach their potential.

Method.  A cross-sectional survey of children and young people, aged 4–25 years with severe, non-ambulant cerebral palsy as defined using the Gross Motor Function Classification System (Levels IV and V). Study participants will be identified from a pre-existing, geographically defined case register and recruited via a healthcare professional known to them. Two assessments will be undertaken: one involving parents/carers at home and using questionnaires; the other involving the child/young person ideally in one of three settings and including X-rays if clinically indicated.

Discussion.  This study will contribute to our knowledge of the history and epidemiology of orthopaedic problems in children and young people with cerebral palsy and how these problems accumulate and impact on participation, health and well-being. The study will also identify unmet need and make recommendations for good practice in relation to the orthopaedic care and management for people with severe cerebral palsy

The effect of choice on motivation for young children on the autism spectrum during discrete trial teaching

Self-determination and decision-making are acknowledged internationally as key rights of persons with disabilities and should play an important role in the development of educational plans and procedures. Not only is the chance for individuals with developmental disabilities to select their own tasks, leisure activities or reinforcers a valuable way of enhancing rights-based education and personal dignity, but choice-making opportunities may also function as a useful clinical or educational tool if they actually improve the efficacy of programmes aimed at the acquisition of socially relevant behaviours and life skills or the reduction of challenging behaviours.

The study reported here assessed whether or not choice affected effectiveness of an educational procedure for three children on the autism spectrum. Following a preference assessment, a number of discrete teaching trials were conducted with each child and, contingent upon targeted responses, either the child or the therapist selected one of three preferred reinforcer items. Reinforcer choice did not affect intervention effectiveness for two of the children; however, performance and motivation improved for the third child. Results re-affirmed the importance of thorough preference assessments prior to intervention and showed that additional stimulus choice contingent on the target response may improve motivation and outcomes for some children.

An international comparison of legal frameworks for supported and substitute decision-making in mental health services

There have been important recent developments in law, research, policy and practice relating to supporting people with decision-making impairments, in particular when a person’s wishes and preferences are unclear or inaccessible. A driver in this respect is the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the implications of the CRPD for policy and professional practices are currently debated. This article reviews and compares four legal frameworks for supported and substitute decision-making for people whose decision-making ability is impaired. In particular, it explores how these frameworks may apply to people with mental health problems. The four jurisdictions are: Ontario, Canada; Victoria, Australia; England and Wales, United Kingdom (UK); and Northern Ireland, UK. Comparisons and contrasts are made in the key areas of: the legal framework for supported and substitute decision-making; the criteria for intervention; the assessment process; the safeguards; and issues in practice. Thus Ontario has developed a relatively comprehensive, progressive and influential legal framework over the past thirty years but there remain concerns about the standardisation of decision-making ability assessments and how the laws work together. In Australia, the Victorian Law Reform Commission (2012) has recommended that the six different types of substitute decision-making under the three laws in that jurisdiction, need to be simplified, and integrated into a spectrum that includes supported decision-making. In England and Wales the Mental Capacity Act 2005 has a complex interface with mental health law. In Northern Ireland it is proposed to introduce a new Mental Capacity (Health, Welfare and Finance) Bill that will provide a unified structure for all substitute decision-making. The discussion will consider the key strengths and limitations of the approaches in each jurisdiction and identify possible ways that further progress can be made in law, policy and practice.

Providing psychological services for people with diabetes

Previous research and service development guidelines have highlighted the importance of psychological issues in diabetes care, and both people with diabetes and diabetes professionals recognise the need for specialist psychological input. This article outlines the development of a service delivery model for psychological services in diabetes care, based on a patient needs assessment and the advice of diabetes professionals. This involved an assessment of the psychological needs of people with diabetes within an urban Health Trust in Northern Ireland, and the collation of the views of local diabetes professionals. Questionnaires to assess for depression, anxiety, binge eating behaviour and diabetes-specific worries were completed by 300 people with diabetes. The participants were accessed through both primary and secondary care diabetes teams. As expected, a high level of psychological distress relative to population norms was illustrated by the patient needs assessment. Particularly high levels of binge eating behaviour were reported, and levels of distress were higher for community-managed patients than for hospital-managed patients. The diabetes professionals unanimously agreed that there is a need for specialist psychological input and contributed to the service delivery model which is outlined in this article.

Stigma and multiple social comparisons in people with schizophrenia

This paper investigates social comparisons in people with schizophrenia. Stigma theories often suggest that people with stigmatized conditions face a chronic threat to self-esteem and that they respond to this in a variety of ways, one of which is by using ingroup downward comparisons. We analysed the spontaneous social comparisons used by, participants in semi-structured interviews. A wide range of comparison dimensions, target others, and groupings were used, most of which did not represent a category of people with schizophrenia in more negative terms than those without the illness. Participants presented themselves positively, referring to downward and lateral comparisons more often than upward comparisons. In addition, although downward comparisons did refer to people with schizophrenia, they were more likely to refer to others who did not have schizophrenia, and to dimensions which were not related to mental illness. It is suggested that investigations of the relations between stigma and self need to take account of the multiple identities and dimensions of comparisons available to people for construing themselves and the social context. Copyright (C) 2001 John Wiley & Sons, Ltd.

Supported Housing for People with Severe Mental Disorders

Background There has been a significant reduction in the number of people with severe mental illness who spend extended periods in long-stay hospitals. District health authorities, local authorities, housing associations and voluntary organisations are jointly expected to provide support for people with severe mental disorder/s. This 'support' may well involve some kind of special housing. Objectives To determine the effects of supported housing schemes compared with outreach support schemes or 'standard care' for people with severe mental disorder/s living in the community. Search methods For the 2006 update we searched the Cochrane Schizophrenia Group Trials Register (April 2006) and the Cochrane Central Register of Controlled Trials (CENTRAL, 2006 Issue 2). Selection criteria We included all relevant randomised, or quasi-randomised, trials dealing with people with 'severe mental disorder/s' allocated to supported housing, compared with outreach support schemes or standard care. We focused on outcomes of service utilisation, mental state, satisfaction with care, social functioning, quality of life and economic data. Data collection and analysis We reliably selected studies, quality rated them and undertook data extraction. For dichotomous data, we would have estimated relative risks (RR), with the 95% confidence intervals (CI). Where possible, we would have calculated the number needed to treat statistic (NNT). We would have carried out analysis by intention-to-treat and would have summated normal continuous data using the weighted mean difference (WMD). We would have presented scale data for only those tools that had attained pre-specified levels of quality and undertaken tests for heterogeneity and publication bias. Main results Although 139 citations were acquired from the searches, no study met the inclusion criteria. Authors' conclusions Dedicated schemes whereby people with severe mental illness are located within one site or building with assistance from professional workers have potential for great benefit as they provide a 'safe haven' for people in need of stability and support. This, however, may be at the risk of increasing dependence on professionals and prolonging exclusion from the community. Whether or not the benefits outweigh the risks can only be a matter of opinion in the absence of reliable evidence. There is an urgent need to investigate the effects of supported housing on people with severe mental illness within a randomised trial.

Would people with Parkinson's disease benefit from palliative care?

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.