The impact of communication disability on quality of life of people with aphasia and their caregivers

Aphasia is a chronic acquired communication disorder that may change people with aphasia (PWA) and their caregivers’ lives for ever. Social and emotional changes are frequently reported by both, although the impact of these changes in quality of life (QOL) needs further research. This study identifies predictors and variables that influence PWA’s and their caregivers’ QOL and social relationships (SR). A cross-sectional descriptive, correlational and comparative study was undertaken with 255 individuals from Portuguese general population (mean age 43 years, range 25-84 years; 148 females, 107 males), 25 PWA (mean age 54 years, range 20-71; 12 females and 13 males), and 25 caregivers (mean age 51 years, range 26-73; 17 females and 8 males). All the participants completed the World Health Quality of Life Bref instrument, the SR domain of the World Health Organization Quality of Life – 100 scale, and the Center for Epidemiologic Studies Depression Scale. Participants with aphasia completed the Lisbon Aphasia Assessment Battery, Barthel Index, Frenchay Activities Index, Communication Disability Profile and the Modified Mini-Mental State which evaluated language disability, aphasia coefficient, activities, participation and cognition. In addition, caregivers completed the Carers’ Assessment of Managing Index to assess coping strategies. PWA and their caregivers are less satisfied with their QOL and SR than Portuguese general population; whereas PWA have the worse QOL and SR. Thus, aphasia seems to impact negatively in their QOL and SR. Emotional status has great importance for QOL and SR among the three groups. PWA’s activities and participation have great impact in both PWA’s and caregivers’ QOL and SR. Additionally, emotional status and participation are the best predictors of PWA’s QOL. Along with these two variables, activities of the PWA are the best predictors of caregivers’ QOL. Participation is the best predictor of PWA’s SR; emotional status and number of cohabitants are best predictors for caregivers’ SR. Aphasia assessment and intervention should take into account all the factors that influence PWA’s and caregivers’ QOL and SR so the central goal of enhancing it can be achieved. These results are important for identifying and planning support needs and are useful in the orientation of the activities carried out by the service providers allowing the adjustment of health programs and policies based on people’s real life needs.

Dealing with uncertainty: challenges and possibilities for the early childhood profession

In many countries, strategies to further develop services and institutions for the education and care of young children are linked to a discourse on professionalism. Ambitious policy goals, it is argued, can only be achieved by a skilled and qualified workforce whose practice is guided by a professional body of knowledge. This article argues that the prevailing conceptualisation of the early childhood professional is constructed out of a particular, hierarchical mode of producing and applying expert knowledge that is not necessarily appropriate to professional practice in the field of early childhood education. However, it is highly effective and contributes to forming a professional habitus that contradicts the relational core of early childhood practice. Drawing on the conceptual framework of hermeneutics, the article explores an alternative paradigm of a relational, systemic professionalism that embraces openness and uncertainty, and encourages co‐construction of professional knowledges and practices. Research, in this frame of thinking, is understood as a dialogic activity of asking critical questions and creating understandings across differences, rather than producing evidence to direct practice.

Developmental Antecedents of Proactive and Reactive Rebelliousness: The Role of Parenting Style, Childhood Adversity, and Attachment

Adolescence is a time of developmental transition that for one in five young people is characterised by feelings of oppositionality, rebellion, and negativism. Despite the prevalent experience of teen turbulence and despite its significance within the phenomenological framework provided by reversal theory (RT), the childhood antecedents of rebelliousness in adolescence and adulthood have not been given extensive empirical attention within RT, although such work has been carried out using other constructs and theories. We examined recalled parenting style, childhood adversity, and attachment style in adulthood as correlates of proactive and reactive rebelliousness in a sample of 80 participants, aged 18 to 50 years. Each participant responded to a questionnaire package containing the revised Adult Attachment Scale, the Parental Bonding Instrument, the Childhood Experience of Care and Abuse Questionnaire, and the Negativism Dominance Scale. We found that paternal abusive parenting, followed by paternal parenting style, paternal neglect, and paternal antipathy were independently predictive of scores on proactive rebelliousness, the sensation-seeking form. Maternal and paternal indifferent parenting styles each were found to equivalently and independently predict scores on reactive rebelliousness, the interpersonal disaffection form. The results of this study suggest these two forms of rebelliousness may have distinctly different antecedents. A longitudinal study is needed to examine the potentially causal pathways that are suggested by the results of this cross-sectional research. We consider reversal theory explanations of these results and contrast them with complementary theoretical frameworks.

‘Disability and HIV in Africa: Breaking the barriers to sexual health care’

Three decades in to the HIV pandemic, the issues affecting people with disabilities remains less known. Increasing attention has been given to this overlooked population when it comes to HIV prevention, treatment and care. This is related to the significant unmet sexual and reproductive health care needs facing people with disabilities worldwide. This article discusses the barriers to sexual health for people with disabilities in Africa, and presents an argument about how mainstream HIV prevention work and research does not adequately attend to the sorts of systemic barriers that exclude people with disabilities, which a more targeted, and critical approach could.

Efficiency in the Enrollment Process for the South Carolina Intellectual Disability and Related Disabilities Waiver Program

The Intellectual Disability and Related Disabilities waiver has had many changes over the years and has evolved into a robust service package that can be a significant help to individuals who wish to remain in the community or at home but would otherwise require institutional level care. Due to the limited amount of funds, it was necessary to create a waiting list for individuals who wish to participate in the ID/RD Waiver program. This project was undertaken to assess if there were practical steps that could be taken to assist in reducing the time and cost involved in the ID/RD Waiver enrollment process.

Contribuição da ecografia cerebral transfontanelar para a avaliação do crescimento cerebral do recém-nascido pré-termo

Tese de doutoramento, Medicina (Pediatria), Universidade de Lisboa, Faculdade de Medicina, 2013

Aspectos psicológicos da fibromialgia : personalidade e história de vida

Tese de doutoramento, Psicologia (Psicologia Clínica), Universidade de Lisboa, Faculdade de Psicologia, 2013

From the Government to the Streets: Why the U.S. is a Policy Innovator in Disability Rights

Thesis (Ph.D.)--University of Washington, 2012

Using Workload Measurement Tools in Diverse Care Contexts: the Experience of Staff in Mental Health and Learning Disability Inpatient Settings

Introduction The critical challenge of determining the correct level and skill-mix of nursing staff required to deliver safe and effective healthcare has become an international concern. It is recommended that evidence-based staffing decisions are central to the development of future workforce plans. Workforce planning in mental health and learning disability nursing is largely under-researched with few tools available to aid the development of evidence-based staffing levels in these environments. Aim It was the aim of this study to explore the experience of staff using the Safer Nursing Care Tool (SNCT) and the Mental Health and Learning Disability Workload Tool (MHLDWT) in mental health and learning disability environments. Method Following a 4-week trial period of both tools a survey was distributed via Qualtrics on-line survey software to staff members who used the tools during this time. Results The results of the survey revealed that the tools were considered a useful resource to aid staffing decisions; however specific criticisms were highlighted regarding their suitability to psychiatric intensive care units (PICU) and learning disability wards. Discussion This study highlights that further development of workload measurement tools is required to support the implementation of effective workforce planning strategies within mental health and learning disability services. Implications for Practice With increasing fiscal pressures the need to provide cost-effective care is paramount within NHS services. Evidence-based workforce planning is therefore necessary to ensure that appropriate levels of staff are determined. This is of particular importance within mental health and learning disability services due to the reduction in the number of available beds and an increasing focus on purposeful admission and discharge.

Affective Instability, Childhood Trauma and Major Affective Disorders

BACKGROUND: Affective instability (AI), childhood trauma, and mental illness are linked, but evidence in affective disorders is limited, despite both AI and childhood trauma being associated with poorer outcomes. Aims were to compare AI levels in bipolar disorder I (BPI) and II (BPII), and major depressive disorder recurrent (MDDR), and to examine the association of AI and childhood trauma within each diagnostic group. METHODS: AI, measured using the Affective Lability Scale (ALS), was compared between people with DSM-IV BPI (n=923), BPII (n=363) and MDDR (n=207) accounting for confounders and current mood. Regression modelling was used to examine the association between AI and childhood traumas in each diagnostic group. RESULTS: ALS scores in descending order were BPII, BPI, MDDR, and differences between groups were significant (p<0.05). Within the BPI group any childhood abuse (p=0.021), childhood physical abuse (p=0.003) and the death of a close friend in childhood (p=0.002) were significantly associated with higher ALS score but no association was found between childhood trauma and AI in BPII and MDDR. LIMITATIONS: The ALS is a self-report scale and is subject to retrospective recall bias. CONCLUSIONS: AI is an important dimension in bipolar disorder independent of current mood state. There is a strong link between childhood traumatic events and AI levels in BPI and this may be one way in which exposure and disorder are linked. Clinical interventions targeting AI in people who have suffered significant childhood trauma could potentially change the clinical course of bipolar disorder.

High Performance Disability Sport Coaching

As the profile of disability sport has risen, so has the emphasis grown beyond participation to include the development of a high performance environment. This book is the first to take an in-depth look at the role of coaches and coaching in facilitating the professionalisation of disability sport, in raising performance standards, and as an important vector for the implementation of significant political, socio-cultural and technological change. Using in-depth case studies of elite disability sport coaches from around the world, the book offers a framework for critical reflection on coaching practice as well as the reader’s own experiences of disability sport. The book also evaluates the vital role of the coach in raising the bar of performance in a variety of elite level disability sports, including athletics, basketball, boccia, equestrian sport, rowing, soccer, skiing, swimming and volleyball. Providing a valuable evidence-based learning resource to support coaches and students in developing their own practice, High Performance Disability Sport Coaching is essential reading for all those interested in disability sport, coaching practice, elite sport development and the Paralympic Games.

Beyond High Performance Disability Sports Coaching?

As the profile of disability sport has risen, so has the emphasis grown beyond participation to include the development of a high performance environment. This book is the first to take an in-depth look at the role of coaches and coaching in facilitating the professionalisation of disability sport, in raising performance standards, and as an important vector for the implementation of significant political, socio-cultural and technological change. Using in-depth case studies of elite disability sport coaches from around the world, the book offers a framework for critical reflection on coaching practice as well as the reader’s own experiences of disability sport. The book also evaluates the vital role of the coach in raising the bar of performance in a variety of elite level disability sports, including athletics, basketball, boccia, equestrian sport, rowing, soccer, skiing, swimming and volleyball. Providing a valuable evidence-based learning resource to support coaches and students in developing their own practice, High Performance Disability Sport Coaching is essential reading for all those interested in disability sport, coaching practice, elite sport development and the Paralympic Games.

High Performance Disability Sport Coaching: Introduction

As the profile of disability sport has risen, so has the emphasis grown beyond participation to include the development of a high performance environment. This book is the first to take an in-depth look at the role of coaches and coaching in facilitating the professionalisation of disability sport, in raising performance standards, and as an important vector for the implementation of significant political, socio-cultural and technological change. Using in-depth case studies of elite disability sport coaches from around the world, the book offers a framework for critical reflection on coaching practice as well as the reader’s own experiences of disability sport. The book also evaluates the vital role of the coach in raising the bar of performance in a variety of elite level disability sports, including athletics, basketball, boccia, equestrian sport, rowing, soccer, skiing, swimming and volleyball. Providing a valuable evidence-based learning resource to support coaches and students in developing their own practice, High Performance Disability Sport Coaching is essential reading for all those interested in disability sport, coaching practice, elite sport development and the Paralympic Games.

Differential Benefit: Preschool Children, Quality of Early Childhood Education Environment and Developmental Gains Important for School Readiness

Thesis (Ph.D.)--University of Washington, 2014