Handbook of Disabled Children's Childhoods: Building Understandings: Child, Youth, Family and Disability. Palgrave Macmillan:Disabled Children in Out-of-Home Care: Issues and Challenges for Practice Kelly, B., Sandra, D. & Winter, K. 2016

This chapter provides an overview of some of the key findings from a large mixed methods study regarding disabled children in care in Northern Ireland

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.

Brain responses and looking behavior during audiovisual speech integration in infants predict auditory speech comprehension in the second year of life

The use of visual cues during the processing of audiovisual (AV) speech is known to be less efficient in children and adults with language difficulties and difficulties are known to be more prevalent in children from low-income populations. In the present study, we followed an economically diverse group of thirty-seven infants longitudinally from 6–9 months to 14–16 months of age. We used eye-tracking to examine whether individual differences in visual attention during AV processing of speech in 6–9 month old infants, particularly when processing congruent and incongruent auditory and visual speech cues, might be indicative of their later language development. Twenty-two of these 6–9 month old infants also participated in an event-related potential (ERP) AV task within the same experimental session. Language development was then followed-up at the age of 14–16 months, using two measures of language development, the Preschool Language Scale and the Oxford Communicative Development Inventory. The results show that those infants who were less efficient in auditory speech processing at the age of 6–9 months had lower receptive language scores at 14–16 months. A correlational analysis revealed that the pattern of face scanning and ERP responses to audiovisually incongruent stimuli at 6–9 months were both significantly associated with language development at 14–16 months. These findings add to the understanding of individual differences in neural signatures of AV processing and associated looking behavior in infants.

Perceived positive and negative consequences after surviving cancer and their relation to quality of life

Surviving childhood cancer has multiple implications on both physical and psychological domains of the individual. However, its study and possible effects on health-related quality of life (HRQoL) outcomes of adolescent survivors has been understudied. The objective of this study was twofold; to assess positive and negative cancer-related consequences (psychosocial and physical) in a sample of adolescent cancer survivors and to explore their relationship with HRQoL outcomes. Forty-one participants answered two questions about positive and negative consequences in the aftermath of cancer and filled in the KIDSCREEN-52 self-reported version. Data were analysed using mixed methods approach. 87.8% of the sample identified positive consequences and 63.4% negative consequences in survivorship. Four positive categories and five negative categories with regard to cancer-related consequences were found. Changed perspectives in life narratives seem to be the positive consequence more related to HRQoL (physical well-being, mood & emotions, autonomy, social support & peers), followed by useful life experience (physical well-being, autonomy, social support & peers). Psychological impact was the most referred negative consequence with a significant detrimental effect on social support and peers HRQoL dimension. Even if the majority of survivors reported benefit finding in the aftermath of cancer, concomitant positive and negative consequences have been found. However, findings only reveal a significant relationship between positive narratives and HRQoL, and negative consequences do not seem to have a significant influence on overall HRQoL in survivorship.

Effect of temperature on embryonic development, larval viability and biomarkers in the first stages of life of Octopus Vulgaris (Cuvier, 1797)

Dissertação de Mestrado, Aquacultura e Pescas, Faculdade de Ciências e Tecnologia, Universidade do Algarve, 2015

AGREED-UPON PROCEDURES REPORT ON CONTRACT FOR PURCHASE OF NURSING CARE SERVICES WITH STATE OF SOUTH CAROLINA DEPARTMENT OF HEALTH AND HUMAN SERVICES

The Medicaid Audits Section of the South Carolina Office of the State Auditor performs audits and reviews of cost reports filed by institutional providers of Medicaid services. These cost reports are used by the Health and Human Services Finance Commission to establish amounts to be paid to these providers for services provided to qualified Medicaid recipients. This report deals with A. Sam Karesh Long Term Care Nursing Facility in North Augusta, S.C.

Quality of Life Predictors and Normative Data

This study identifies predictors and normative data for quality of life (QOL) in a sample of Portuguese adults from general population. A cross-sectional correlational study was undertaken with two hundred and fifty-five (N = 255) individuals from Portuguese general population (mean age 43 years, range 25–84 years; 148 females, 107 males). Participants completed the European Portuguese version of the World Health Organization Quality of Life short-form instrument and the European Portuguese version of the Center for Epidemiologic Studies Depression Scale. Demographic information was also collected. Portuguese adults reported their QOL as good. The physical, psychological and environmental domains predicted 44 % of the variance of QOL. The strongest predictor was the physical domain and the weakest was social relationships. Age, educational level, socioeconomic status and emotional status were significantly correlated with QOL and explained 25 % of the variance of QOL. The strongest predictor of QOL was emotional status followed by education and age. QOL was significantly different according to: marital status; living place (mainland or islands); type of cohabitants; occupation; health. The sample of adults from general Portuguese population reported high levels of QOL. The life domain that better explained QOL was the physical domain. Among other variables, emotional status best predicted QOL. Further variables influenced overall QOL. These findings inform our understanding on adults from Portuguese general population QOL and can be helpful for researchers and practitioners using this assessment tool to compare their results with normative data

A Clinical Support System Based on Quality of Life Estimation

Quality of life is a concept influenced by social, economic, psychological, spiritual or medical state factors. More specifically, the perceived quality of an individual's daily life is an assessment of their well-being or lack of it. In this context, information technologies may help on the management of services for healthcare of chronic patients such as estimating the patient quality of life and helping the medical staff to take appropriate measures to increase each patient quality of life. This paper describes a Quality of Life estimation system developed using information technologies and the application of data mining algorithms to access the information of clinical data of patients with cancer from Otorhinolaryngology and Head and Neck services of an oncology institution. The system was evaluated with a sample composed of 3013 patients. The results achieved show that there are variables that may be significant predictors for the Quality of Life of the patient: years of smoking (p value 0.049) and size of the tumor (p value < 0.001). In order to assign the variables to the classification of the quality of life the best accuracy was obtained by applying the John Platt's sequential minimal optimization algorithm for training a support vector classifier. In conclusion data mining techniques allow having access to patients additional information helping the physicians to be able to know the quality of life and produce a well-informed clinical decision.

Impact of Syncope on Quality of Life: Validation of a Measure in Patients Undergoing Tilt Testing

INTRODUCTION AND OBJECTIVES: Recurrent syncope has a significant impact on quality of life. The development of measurement scales to assess this impact that are easy to use in clinical settings is crucial. The objective of the present study is a preliminary validation of the Impact of Syncope on Quality of Life questionnaire for the Portuguese population. METHODS: The instrument underwent a process of translation, validation, analysis of cultural appropriateness and cognitive debriefing. A population of 39 patients with a history of recurrent syncope (>1 year) who underwent tilt testing, aged 52.1 ± 16.4 years (21-83), 43.5% male, most in active employment (n=18) or retired (n=13), constituted a convenience sample. The resulting Portuguese version is similar to the original, with 12 items in a single aggregate score, and underwent statistical validation, with assessment of reliability, validity and stability over time. RESULTS: With regard to reliability, the internal consistency of the scale is 0.9. Assessment of convergent and discriminant validity showed statistically significant results (p<0.01). Regarding stability over time, a test-retest of this instrument at six months after tilt testing with 22 patients of the sample who had not undergone any clinical intervention found no statistically significant changes in quality of life. CONCLUSIONS: The results indicate that this instrument is of value for assessing quality of life in patients with recurrent syncope in Portugal.

Contributo para a validação da versão portuguesa do instrumento de avaliação VOICE (service users perceptions of impatient care, Views on Inpatient Care)

RESUMO: Nos últimos anos assistiu-se a um reposicionamento das pessoas portadoras de doença mental na sociedade, no sentido de viverem em pleno os seus direitos, sem restrições. Esta tendência acompanhou as transformações que se têm vivido na forma como os utentes dos serviços de saúde interagem com os mesmos e com os profissionais de saúde, de forma a permitir uma maior autonomização e responsabilização no que concerne ao tratamento da sua doença, a relação que estabelecem com o seu médico, e a participação na avaliação e monitorização da qualidade dos serviços. Mais recentemente, também no mundo científico, esta afirmação se fez sentir, com o surgimento de investigação liderada por utentes, no sentido de estudar de forma adequada questões que partem do seu ponto de vista, e que possibilitem a produção de conhecimento significativa no contexto das suas experiências. Com o presente trabalho pretende-se contribuir para a validação da versão portuguesa do VOICE (Service Users’ Perceptions of Inpatient Care, Views on Inpatient Care) (Evans et al., 2012), instrumento para a avaliação dos serviços de internamento de agudos em psiquiatria, construído a partir de um investigação liderado por utentes e partindo das suas perspectiva. O VOICE é constituído por 19 questões, agrupadas em sete domínios: admissão; cuidados e tratamento; medicação; equipa de técnicos do internamento; terapia e atividades; ambiente e diferenças. O presente estudo envolveu uma amostra de 85 utentes de um serviço de internamento de agudos de uma instituição psiquiátrica do Norte de Portugal. A versão portuguesa do VOICE apresentou boa aceitação por parte dos utentes e boas características psicométricas - a consistência interna foi alta (α = 0,87) e todos, exceto um item (item 6), apresentam elevadas correlações item-total (variando de 0,18 - item 6 a 0,71 - item 11; M = 0,54, DP = 0,15), sugerindo ser um instrumento útil na avaliação dos serviços de internamento de agudos. No futuro torna-se necessário alargar o estudo a outros contextos de internamento e envolvendo amostras mais alargadas.-------------- ABSTRACT: In recent years there has been a gradual process to help people with the experience of mental illness regaining their full rights. Following the advances in the understanding of mental health problems, and the use of medication to help patients overcome symptoms, service-users have become more autonomous and responsible in the way they deal with health professionals, and are now called to participate in assessing and monitoring mental health services and policies. In the context of these transformations we have assisted to the emergence of research led by service-users (in this case of psychiatric and mental health services) in order to emphasize their point of view, and to enable the production of significant knowledge resulting from their experiences, and perceptions. The present study aims to contribute to the dissemination of service-user led research, based on the adaptation and validation of the Portuguese version of the VOICE - Service Users' Perceptions Questionnaire, Views on Inpatient Care. (Evans et al., 2012). The VOICE is composed of 19 questions, grouped in seven domains: admissions, care and treatment, medication, team of technicians during hospitalization, therapy and activities, environment and diversity. The present study involved a sample of 85 inpatient of a psychiatric institution in Northern Portugal. The Portuguese version of the VOICE showed good psychometric properties and was well accepted by patients [high internal consistency (α = 0,87); and high correlation of each item, except item 6, with the total score (ranging from 0.18 on item 6 to 0.71 on item 11; average=0,54; SD=0,15), suggesting it to be a useful tool for assessing inpatient services. In the future there is a need to extend the study to other contexts and include larger samples.