Interpreting communication of people with profound and severe learning difficulties

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues.

Consensus Statement: Chromosomal Microarray Is a First-Tier Clinical Diagnostic Test for Individuals with Developmental Disabilities or Congenital Anomalies

Chromosomal microarray (CMA) is increasingly utilized for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA). Performing CMA and G-banded karyotyping on every patient substantially increases the total cost of genetic testing. The International Standard Cytogenomic Array (ISCA) Consortium held two international workshops and conducted a literature review of 33 studies, including 21,698 patients tested by CMA. We provide an evidence-based summary of clinical cytogenetic testing comparing CMA to G-banded karyotyping with respect to technical advantages and limitations, diagnostic yield for various types of chromosomal aberrations, and issues that affect test interpretation. CMA offers a much higher diagnostic yield (15%-20%) for genetic testing of individuals with unexplained DD/ID, ASD, or MCA than a G-banded karyotype (similar to 3%, excluding Down syndrome and other recognizable chromosomal syndromes), primarily because of its higher sensitivity for submicroscopic deletions and duplications. Truly balanced rearrangements and low-level mosaicism are generally not detectable by arrays, but these are relatively infrequent causes of abnormal phenotypes in this population (<1%). Available evidence strongly supports the use of CMA in place of G-banded karyotyping as the first-tier cytogenetic diagnostic test for patients with DD/ID, ASD, or MCA. G-banded karyotype analysis should be reserved for patients with obvious chromosomal syndromes (e.g., Down syndrome), a family history of chromosomal rearrangement, or a history of multiple miscarriages.

Addressing internet training issues for people with Parkinson's disease

The Internet enables access to information, services, support and participation in leisure opportunities. Some populations, including people with disabilities, lack access to these opportunities through the Internet. Barriers may include finances, physical access, lack of resources and inaccessible websites. Limited access to Internet training is an additional barrier for people with communication impairments. People with Parkinson's disease (PD) may have difficulty accessing usual Internet training due to high-level language, cognitive and physical limitations. Aphasia-friendly Internet training materials were trialed with this population to investigate if participants could learn to use the Internet and would benefit from Internet training. The tutors' experience was also investigated using qualitative measures. Seven people with PD were matched with volunteer tutors. These pairs met for six Internet training lessons using training materials available as a free download from: http://dexter.shrs.uq.edu.au/cdaru/aphasiagroups/. Pre and post-test Internet skills assessments and attitudinal questionnaires were conducted. Significant differences between pre and post-test scores were found. Participants reached varying levels of independence on Internet tasks. Favorable outcomes were reported by participants, and tutors reported a positive experience. Further investigation is recommended to determine the efficacy of this approach compared with other training avenues and with other communication-impaired populations. Practical and theoretical implications for speech pathology practice are discussed.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.

Systematic review investigating the reporting of comorbidities and medication in randomized controlled trials of people with dementia

Objectives: dementia is a debilitating condition characterised by global loss of cognitive and intellectual functioning, which reduces social and occupational performance. This population frequently presents with medical co-morbidities such as hypertension, cardiovascular disease and diabetes. The CONSORT statement outlines recommended guidance on reporting of participant characteristics in clinical trials. It is, however, unclear how much these are adhered to in trials assessing people with dementia. This paper assesses the reporting of medical co-morbidities and prescribed medications for people with dementia within randomised controlled trial (RCT) reports. Design: a systematic review of the published literature from the databases AMED, CINAHL, MEDLINE, EMBASE and the Cochrane Clinical Trial Registry from 1 January 1997 to 9 January 2014 was undertaken in order to identify RCTs detailing baseline medical co-morbidities and prescribed medications . Eligible studies were appraised using the Critical Appraisal Skills Programme (CASP) RCT appraisal tool, and descriptive statistical analyses were calculated to determine point prevalence. Results: nine trials, including 1474 people with dementia, were identified presenting medical co-morbidity data. These indicated neurological disorders ( prevalence 91%), vascular disorders (prevalence 91%), cardiac disorders ( prevalence 74%) and ischaemic cerebrovascular disease ( prevalence 53%) were most frequently seen. Conclusions: published RCTs poorly report medical co-morbidities and medications for people with dementia. Future trials should include the report of these items to allow interpretation of whether the results are generalisable to frailer older populations.

The importance of detecting and managing comorbidities in people with dementia?

Dementia is a debilitating condition characterised by global loss of cognitive and intellectual functioning, which gradually interferes with social and occupational performance. It is a common worldwide condition with a significant impact on society. There are currently 36 million people worldwide with Alzheimer's disease (AD) and other dementias [1]. This is expected to more than double by 2030 (65 million) and reach ∼115 million in 2050, unless a major breakthrough is made. The worldwide societal costs were estimated at USD 604 billion in 2010 and rising [2]. To date research on the specific physical healthcare needs of people with dementia has been neglected. Yet, physical comorbidities are reported as common in people with dementia [3] and have been shown to lead to increased disability and reduced quality of life for the affected person and their carer [4]. Dementia is most frequently associated with older people who often present with other medical conditions, known as co-morbidities. Such co-morbidities include diabetes, chronic obstructive pulmonary disorder, musculoskeletal disorders and chronic cardiac failure and are common, 61% of people with …

Children with Learning Disabilities and Challenging Behaviour: Relationship between Parents and Professionals

This multi-perspectival Interpretive Phenomenological Analysis (IPA) study explored how people in the ‘networks of concern’ talked about how they tried to make sense of the challenging behaviours of four children with severe learning disabilities. The study also aimed to explore what affected relationships between people. The study focussed on 4 children through interviewing their mothers, their teachers and the Camhs Learning Disability team members who were working with them. Two fathers also joined part of the interviews. All interviews were conducted separately using a semi-structured approach. IPA allowed both a consideration of the participant’s lived experiences and ‘objects of concern’ and a deconstruction of the multiple contexts of people’s lives, with a particular focus on disability. The analysis rendered five themes: the importance of love and affection, the difficulties, and the differences of living with a challenging child, the importance of being able to make sense of the challenges and the value of good relationships between people. Findings were interpreted through the lens of CMM (Coordinated Management of Meaning), which facilitated a systemic deconstruction and reconstruction of the findings. The research found that making sense of the challenges was a key concern for parents. Sharing meanings were important for people’s relationships with each other, including employing diagnostic and behavioural narratives. The importance of context is also highlighted including a consideration of how societal views of disability have an influence on people in the ‘network of concern’ around the child. A range of systemic approaches, methods and techniques are suggested as one way of improving services to these children and their families. It is suggested that adopting a ‘both/and’ position is important in such work - both applying evidence based approaches and being alert to and exploring the different ways people try and make sense of the children’s challenges. Implications for practice included helping professionals be alert to their constructions and professional narratives, slowing the pace with families, staying close to the concerns of families and addressing network issues.

SOLUTIONS: Assistive Technology for People with Brain Injury, February 22, 2016

The Brain A project of the Iowa Department of Public Health and the Iowa Advisory Council on Brain Injuries, produced with assistance from the Iowa Program for Assistive Technology University of Iowa Center for Disabilities and Development and Easter Seals This booklet was supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H21MC26929 titled: Traumatic Brain Injury Implementation. This information or content and conclusions are those of the authors/s and should not be construed as the official position or policy of, nor should any endorsements be inferred by, HRSA, HHS, or the U.S. Government.

Distance Education in the Professionalization of People with Disability and Prison Inmates

This paper illustrates the impact of the Universidad Estatal a Distancia  (UNED, by its Spanish acronym) in supporting and professionalizing the vulnerable groups of the Costa Rican society, including prison inmates, persons with physical disability, individuals from remote areas, among others.  This study attempts to answer this type of questions: What kind of support has been provided to these sectors?  What are the challenges faced by distance education universities to succeed?  How does UNED have solved these challenges?  What is the impact of the Universidad Estatal a Distancia on the Costa Rican society for the professionalization of its population?  Documentation and statistics have been used in the study; in addition, two people who graduated from UNED were selected to illustrate the type of cases the University serves.(1) Translator’s note: It refers to the “Costa Rican Distance Education State University”.

The impact of pain on the quality of life of people with multiple sclerosis: A community survey

The purpose of this study was to examine the impact of pain on functioning across multiple quality of life (QOL) domains among individuals with multiple sclerosis (MS). A total of 219 people were recruited from a regional MS society membership database to serve as the community-based study sample. All participants completed a questionnaire containing items about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the preceding 2 weeks. Respondents who reported pain then completed an in-person structured pain interview assessing pain characteristics (intensity, quality, location, extent, and duration). Comparisons between participants with and without MS-related pain demonstrated that pain prevalence and intensity were strongly correlated with QOL: physical health, psychological health, level of independence, and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. These findings suggest that for people with MS, pain is an important source of distress and disability beyond that caused by neurologic impairments.