The development of an observation tool for use with parents with psychiatric disability and their preschool children

Community-based treatment and care of people with psychiatric disabilities has meant that they are now more likely to engage in the parenting role. This has led to the development of programs designed to enhance the parenting skills of people with psychiatric disabilities. Evaluation of these programs has been hampered by a paucity of evaluation tools. This study's aim was to develop and trial a tool that examined the parent-child interaction within a group setting, was functional and easy to use, required minimum training and equipment, and had acceptable levels of reliability and validity. The revised tool yielded a single scale with acceptable reliability. It had discriminative validity and concurrent validity with non-independent global ratings of parenting. Sensitivity to change was not investigated. The findings suggest that this method of evaluating parenting is likely to have both clinical and research utility and further investigation of the psychometric properties of the tool is warranted.

The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers

Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes.. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population.

'Listen to my madness':understanding the experiences of people with serious mental illness

This article explores the salience of disability theory for understanding the experiences of people with serious mental illness. Drawing on data from a focus group study, we suggest that users experience both impairment (as embodied irrationality) which can, in itself, be oppressive, and also have to manage their lives within a largely disabling society. We outline some of the strategies adopted by users to manage their situation and ensure they access and receive health services, and illustrate how these are a result of the complex relationship between disability and impairment. We suggest that using a framework of the social model of disability provides a useful way of understanding and making sense of the experience of users with serious mental illness. © Blackwell Publishing Ltd/Foundation for the Sociology of Health & Illness 2005.

Anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects

Background: Anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. Older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comorbidities. We sought to determine anticholinergic burden in ageing people with intellectual disability. Methods: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a study on the ageing of 753nationally representative people with an IDC40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale (ACB) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. Results: Overall, 70.1 % (527) reported taking medications with possible or definite anticholinergic properties (ACBC1), with a mean (±SD) ACB score of 4.5 (±3.0) (maximum 16). Of those reporting anticholinergic exposure (n=527), 41.3 % (217) reported an ACB score o fC5. Antipsychotics accounted for 36.4 % of the total cumulative ACB score followed by anticholinergics (16 %) and antidepressants (10.8 %). The most frequently reported medicine with anticholinergic activity was carbamazepine 16.8 % (127). The most frequently reported medicine with high anticholinergic activity (ACB 3) was olanzapine13.4 % (101). There was a significant association between higher anti-cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. Conclusion: Using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. The finding highlights the need for comprehensive reviews of medications.

A case of bilateral perisylvian syndrome with reading disability

Bilateral Perisylvian Syndrome (BPS) often presents with epilepsy and significant behavioral impairments that can include mental retardation, dysarthria, delayed speech development, and delayed fine motor development (Graff-Radford et al., 1986 and Kuzniecky et al., 1993). While a small subset of BPS cases have been described as having relatively isolated language delays (Leventer et al., 2010), BPS is not expected in children with dyslexia. As part of a Medical University of South Carolina, IRB approved multi-site study involving retrospective and de-identified dyslexia data, we unexpectedly identified a 14.05 year old male with evidence of BPS whose father had been diagnosed with dyslexia and dysgraphia. This child had been recruited for a neuroimaging study on dyslexia from a school specializing in educating children with dyslexia. The T1-weighted MRI scan from this child demonstrated a highly unusual perisylvian sulcal/gyral patterning that is a defining feature of BPS (Fig. 1). BPS cases exhibit bilateral dysgenesis of the Sylvian fissure and surrounding gyri, which appears to occur because of a limited or absent arcuate fasciculus (Kilinc, Ekinci, Demirkol, & Agan, 2015). This BPS case also had a relatively enlarged atrium of the lateral ventricle that is consistent with the BPS anatomical presentation and reduction of parietal white matter (Graff-Radford et al., 1986, Kilinc et al., 2015 and Toldo et al., 2011).

Comprometimento Organizacional, Autocriticismo e Autocompaixão em Profissionais/Cuidadores Formais que Trabalham com Pessoas com Deficiência/Doença Mental

Introdução: Alguns estudos internacionais e nacionais têm-se dedicado a estudar as caraterísticas psicológicas de profissionais/cuidadores que trabalham na área da prestação de cuidados a pessoas com doença e deficiência mental. Porém, segundo temos conhecimento são escassos ou mesmo inexistentes os estudos que abordem os níveis de autocriticismo, autocompaixão e comprometimento organizacional destes profissionais/cuidadores. Foram nossos objetivos: caraterizar uma amostra de cuidadores formais/profissionais que trabalham com pessoas com doença e deficiência mental em diferentes variáveis sociodemográficas e profissionais; analisar os níveis de autocriticismo, autocompaixão e comprometimento organizacional destes cuidadores formais/profissionais, bem como explorar as associações entre todas estas variáveis (entre si e com as variáveis sociodemográficas e profissionais). Metodologia: 55 cuidadores formais de pessoas com doença/deficiência mental (sexo feminino/n = 49, 84,5%; idade média de 45,21; DP = 10,92; variação = 22-65) preencheram um questionário sociodemográfico, o Questionário de Comprometimento Organizacional, a Escala das Formas do Autocriticismo e Autotranquilização e a Escala de Autocompaixão. Resultados: O Eu inadequado apresentou um valor médio bastante maior que o Eu detestado. O valor médio do Eu tranquilizador foi superior a qualquer dimensão de autocriticismo. O Calor-Compreensão (autocompaixão) apresentou o valor médio mais elevado e a Autocrítica o valor médio mais baixo. O Eu inadequado e detestado associaram-se positivamente às dimensões negativas de autocompaixão e o Eu tranquilizador às dimensões positivas de autocompaixão. O Comprometimento Afetivo associou-se positivamente ao Autocriticismo total. O Comprometimento Calculativo associou-se positivamente ao Eu detestado, que foi seu preditor. O Comprometimento Normativo associou-se de forma positiva ao Eu detestado, Autocriticismo total e idade negativamente ao Mindfulness. A idade foi o seu preditor. O Comprometimento Afetivo associou-se positivamente aos meses de trabalho na instituição, que foram seus preditores. Os cuidadores com um familiar com deficiência mental tiveram um valor mais baixo de Eu inadequado. Discussão: No geral, esta amostra de cuidadores formais apresentou caraterísticas psicológicas que nos tranquilizam quanto ao papel que desempenham junto de pessoas com doença/deficiência mental, mas as instituições devem sempre encontrar formas de estimular os níveis de comprometimento e autocompaixão dos seus profissionais. / Introduction: Some international and national studies have focused on studying the psychological characteristics of professionals/caregivers working with people with mental disease and intelectual disability. However, to our knowledge, the studies exploring levels of selfcriticism, self-compassion and organizational commitment in these professionals are scarce or even nonexistent. Our goals were to: characterize a sample of formal caregivers/professionals who work with people with mental illness and intellectual in different sociodemographic and professional variables; analyze the levels of selfcriticism, self-compassion and organizational commitment of these formal caregivers/professionals, as well as explore the associations between all these variables (with each other and with the sociodemographic and professional variables and professionals). Methodology: 55 caregivers of people with mental disease/intelectual disability (female/n = 49, 84.5%; mean age of 45,21; DP = 10,92; variation = 22-65) completed a sociodemographic questionnaire, the Organizational Commitment questionnaire, the Forms of Self Criticism Rating Scale and the Self- Compassion Scale. Results: Inadequate Self had na higher mean value than the Hated Self. The mean value of the Reassuring Self was higher than any dimension of selfcriticism. Self-Kindness was the one with a higher mean value (of self-compassion) and Self-Judjment the one with the lowest mean value. The Inadequate Self and the Hated Self were positively associated with the negative dimensions of selfcompassion and the Reassuring Self with the positive dimensions of selfcompassion. The Affective Commitment was positively associated to total selfcriticism. The Continuance Commitment was associated with the Hated Self (positively), being its predictor. The Normative Commitment was positively associated to the Hated Self, the total selfcriticism and age and negatively to Mindfulness. Age was its predictor. The Affective Commitment was positively associated to months of work at the institution. This variable was its predictor. Professionals with a family member with intellectual disability had a lower value of Inadequate Self. Discussion: In general, this sample of formal caregivers presented psychological characteristics that reassure us about the role that they have while working with people with mental disease/intellectual disability, but the institutions must always find ways of stimulating the commitment and selfcompassion levels of their professionals.

Promoting oral health in adults with learning disability

Introduction: It is complex to define learning disabilities, there is no single universal definition used; there are different interpretations and definitions used for learning disabilities in different countries and communities. Primarily, the term “learning disability” sometimes used as “learning difficulties” is a term widely used in UK. There are various types and degree of severity of learning disabilities depending upon the extent of disorder. Though different definitions used all over the world, its types and classification coupled with their health and oral health needs are discussed in this review. Objectives:  To review the background literature on definitions of learning disabilities and health needs of this population.  To review literature on individual clinical preventive intervention to determine the effectiveness in promoting oral health amongst adults in learning disabilities.  To review literature in relation to community based preventive dental measures.  To determine the interventions in this areas are appropriate to support policy and practice and if these interventions establish good evidence to suggest that the oral health needs of adults with learning disabilities are met or not.  To make recommendations in implementing future preventive oral health interventions for adults with learning disabilities. Methodology: It was develop a comprehensive narrative synthesis of previously published literature from different sources and summarizes the whole research in a particular area identifying gap of knowledge. It provides a broad perspective of a subject and supports continuing education. It also is directed to inform policy and further research. It is a qualitative type of research with a broad question and critical analysis of literature published in books, article and journals. The research question evaluated on PICOS criteria is: Effectiveness of preventive dental interventions in adults with learning disabilities. The research question clearly defines the PICOS i.e. participants, interventions, comparison, outcome and study design. The Cochrane database of systematic reviews (CDSR), Database of Abstracts of Reviews of effects (DARE) through York University and National institute of Health and Clinical Excellence (NICE) was searched to identify need of this review. There was no literature review found on the preventive dental interventions found hence, justifying this review. The guidance used in this review is from York University and methods opted for search of literature is based on the following: Type of participants, interventions, outcome measure, studies and search. The review of literature; author search; systematic and narrative reviews, through the following electronic databases via UFP library services: Pub-Med, Medline, EMBASE, CINHAL, Google scholar; Science Direct; Social and Medicine. A comprehensive search of all available literature from 1990-2015, including systematic reviews, policy documents and some guideline documents was done. Internet resource used to access; Department of Health, World Health Organization, Disability World, Disability Rights Commission, the Stationery office, MENCAP, Australian Learning Disability Association. The literature search was carried out with single word, combined words and phrases, authors' names and the title of literature search. Results: It is primarily looking at the oral health interventions available for adults with learning disabilities in clinical settings and the community measures observed over a period of 25 years 1990-2015. There were 7of the clinical intervention studies and one community based intervention study was added in this review. Conclusion: There is a gap of knowledge identified in not having ample research in the area of preventive dental interventions in adults with learning or intellectual disabilities and there is a need of more research, studies need to be of a better quality and a special consideration is required in the community settings where maintenance of oral hygiene for this vulnerable group of society is hugely dependent on their caregivers. Though, the policy and guideline directs on the preventive dental interventions of adults with LD there still a gap evident in understanding and implication of the guidance in practice by the dental and care support team. Understanding learning disabilities and to identify their behavior, compliance and oral health needs is paramount for all professionals working with or for them at each level.

Intervenção psicomotora em saúde mental : Casa de Saúde de São João de Deus, Funchal

No âmbito do 2º Ciclo de Reabilitação Psicomotora realizou-se o aprofundamento de competências profissionais, na área da saúde mental. O estágio teve lugar na Casa de Saúde de São João de Deus – no Funchal, instituição particular de solidariedade social. A Reabilitação Psicomotora é transdisciplinar com aplicações em diversas áreas, incidindo a aplicação prática em indivíduos com Dificuldades Intelectuais e Desenvolvimentais, e em indivíduos com Alcoolismo, respetivamente, numa Unidade de Evolução Prolongada, e no Centro de Reabilitação Alcoólica. A intervenção realizada será ilustrada mediante a descrição de estudos de caso (N=4). O objetivo da intervenção centrou-se na promoção de um funcionamento independente, sendo as atividades centradas na promoção de regras e normas, manutenção de atividades de vida diária, promoção de relações interpessoais e manutenção de capacidades sensoriomotoras e a promoção da qualidade de vida junto de um grupo de indivíduos com Dificuldades Intelectuais e Desenvolvimentais. Por sua vez, no Centro de Reabilitação Alcoólica (N=10), os objetivos da intervenção foram a tomada de consciência do problema, responsabilização e promoção de hábitos associados a um estilo de vida saudável. A avaliação inclui instrumentos de medida do funcionamento adaptativo (ECAP) e da qualidade de vida (EPR) e a bateria psicomotora (BPM), na unidade de evolução prolongada, e SF-36, e URICA no centro de recuperação de alcoologia, aplicados em dois momentos (inicial e final). Mediante os resultados obtidos a intervenção, que envolveu um conjunto de atividades de mediação corporal, teve um impacto positivo observando-se algumas melhorias no funcionamento adaptativo, qualidade de vida e competências psicomotoras.

School belongingness and mental health functioning across the primary-secondary transition in a mainstream sample: Multi-group cross-lagged analyses

The relationship between school belongingness and mental health functioning before and after the primary-secondary school transition has not been previously investigated in students with and without disabilities. This study used a prospective longitudinal design to test the bi-directional relationships between these constructs, by surveying 266 students with and without disabilities and their parents, 6-months before and after the transition to secondary school. Cross-lagged multi-group analyses found student perception of belongingness in the final year of primary school to contribute to change in their mental health functioning a year later. The beneficial longitudinal effects of school belongingness on subsequent mental health functioning were evident in all student subgroups; even after accounting for prior mental health scores and the cross-time stability in mental health functioning and school belongingness scores. Findings of the current study substantiate the role of school contextual influences on early adolescent mental health functioning. They highlight the importance for primary and secondary schools to assess students' school belongingness and mental health functioning and transfer these records as part of the transition process, so that appropriate scaffolds are in place to support those in need. Longer term longitudinal studies are needed to increase the understanding of the temporal sequencing between school belongingness and mental health functioning of all mainstream students.

The impact of personal background and school contextual factors on academic competence and mental health functioning across the primary-secondary school transition

Students negotiate the transition to secondary school in different ways. While some thrive on the opportunity, others are challenged. A prospective longitudinal design was used to determine the contribution of personal background and school contextual factors on academic competence (AC) and mental health functioning (MHF) of 266 students, 6-months before and after the transition to secondary school. Data from 197 typically developing students and 69 students with a disability were analysed using hierarchical linear regression modelling. Both in primary and secondary school, students with a disability and from socially disadvantaged backgrounds gained poorer scores for AC and MHF than their typically developing and more affluent counterparts. Students who attended independent and mid-range sized primary schools had the highest concurrent AC. Those from independent primary schools had the lowest MHF. The primary school organisational model significantly influenced post-transition AC scores; with students from Kindergarten--Year 7 schools reporting the lowest scores, while those from the Kindergarten--Year 12 structure without middle school having the highest scores. Attending a school which used the Kindergarten--Year 12 with middle school structure was associated with a reduction in AC scores across the transition. Personal background factors accounted for the majority of the variability in post-transition AC and MHF. The contribution of school contextual factors was relatively minor. There is a potential opportunity for schools to provide support to disadvantaged students before the transition to secondary school, as they continue to be at a disadvantage after the transition.

Structured professional judgement approach to risk assessment: generalisability across patient groups for the prediction of adverse outcomes in secure mental health care

This is a redacted version of the the final thesis. Copyright material has been removed to comply with UK Copyright Law.

Feminist Disability Theory: Domestic Violence Against Women with a Disability

Women with a disability continue to experience social oppression and domestic violence as a consequence of gender and disability dimensions. Current explanations of domestic violence and disability inadequately explain several features that lead women who have a disability to experience violent situations. This article incorporates both disability and material feminist theory as an alternative explanation to the dominant approaches (psychological and sociological traditions) of conceptualising domestic violence. This paper is informed by a study which was concerned with examining the nature and perceptions of violence against women with a physical impairment. The emerging analytical framework integrating material feminist interpretations and disability theory provided a basis for exploring gender and disability dimensions. Insight was also provided by the women who identified as having a disability in the study and who explained domestic violence in terms of a gendered and disabling experience. The article argues that material feminist interpretations and disability theory, with their emphasis on gender relations, disablism and poverty, should be used as an alternative tool for exploring the nature and consequences of violence against women with a disability.