Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

FAMILY CHARACTERISTICS, STATE PROGRAM EFFECTIVENESS, AND REPORT OF INADEQUATE CARE AMONG FAMILIES OF YOUNG CHILDREN WITH HEARING LOSS

Approximately 1.6 per 1,000 newborns in the U.S. are born with hearing loss. Congenital hearing loss poses a risk to their speech, language, cognitive, and social-emotional development. Early detection and intervention can improve outcomes. Every state has an Early Hearing Detection and Intervention program (EHDI) to promote and track screening, audiological assessments and linkage to early intervention. However, a large percentage of children are “lost to system (LTS),” meaning that they did not receive recommended care or that it was not reported. This study used data from the 2009-2010 National Survey of Children with Special Health Care Needs and data from the 2011 EHDI Hearing Screening and Follow-Up Survey to examine how 1) family characteristics; 2) EHDI program effectiveness, as determined by LTS percentages; and 3) the family conditions of education and poverty are related to parental report of inadequate care. The sample comprised 684 children between the ages of 0 and 5 years with hearing loss. The results indicated that living in states with less effective EHDI programs was associated with an increased likelihood of not receiving early intervention services (EIS) and of reporting poor family-centered communication. Sibling classification was associated with both receipt of EIS and report of unmet need. Single mothers were less likely to report increased difficulties accessing care. Poor and less educated families, assessed separately, who lived in states with less effective EHDI programs, were more likely to report non-receipt of EIS and less likely to report unmet need as compared to similar families living in states with more effective programs. Poor families living in states with less effective programs were more likely to report less coordinated care than were poor families living in states with more effective programs. This study supports the conclusion that both family characteristics and the effectiveness of state programs affect quality of care outcomes. It appears that less effective state programs affect disadvantaged families’ service receipt report more than that of advantaged families. These findings are important because they may provide insights into the development of targeted efforts to improve the system of care for children with hearing loss.

Intervenção precoce em contextos naturais : uma revisão sistemática da literatura

A Intervenção Precoce é uma área científica que evidencia uma evolução muito significativa em poucos anos. A mudança de paradigma – do modelo centrado na criança para o modelo centrado na família – implica novos contextos e formas de prestação de serviços, sendo prática recomendada na atualidade – a intervenção em contextos naturais. Este trabalho surge assim com o objetivo de realizar uma revisão da literatura sobre esta temática: Intervenção Precoce em contextos naturais. Pretendeu-se discutir o conceito e a sua importância no panorama atual, diversos instrumentos, modelos e propostas de intervenção, bem como resultados de investigações conduzidas a nível internacional e nacional. No seio dos contextos naturais surge um conceito ainda mais específico designado como rotinas, merecendo papel de destaque pela sua relevância, num trabalho de base ecológica. Aprofundamos mais especificamente, o tema das rotinas em contexto familiar e das rotinas em contexto educativo pois o contexto educativo e domiciliário são dos contextos naturais mais referidos na literatura em crianças entre os 0 e os 6 anos de idade. A literatura científica demonstrou, de forma clara, que as rotinas que acontecem nos contextos naturais da criança são mais eficazes para apoiar e sustentar o trabalho em intervenção precoce. Concluímos ainda que é uma área que carece de investigação, tanto em termos internacionais como nacionais, estando, o nosso país mais focado no desenvolvimento e investigação de intervenções baseadas nas rotinas em contexto domiciliário do que em contexto educativo.

[pediatric Patient Classification System: Improvement Of An Instrument].

Improve the content validity of the instrument for classification of pediatric patients and evaluate its construct validity. A descriptive exploratory study in the measurement of the content validity index, and correlational design for construct validation through exploratory factor analysis. The content validity index for indicators was 0.99 and it was 0.97 for graded situations. Three domains were extracted in the construct validation, namely: patient, family and therapeutic procedures, with 74.97% of explained variance. The instrument showed evidences of content and construct validity. The validation of the instrument occurred under the approach of family-centered care, and allowed incorporating some essential needs of childhood such as playing, interaction and affection in the content of the instrument.

A avaliação da comunicação da criança com perturbação do espetro do autismo: perspetiva de pais e de profissionais

Dissertação de mestrado em Educação Especial (área de especialização Intervenção Precoce)

Resiliência familiar e risco psicossocial: estudo das percepções das famílias e dos profissionais que as acompanham

Dissertação de mestrado em Estudos da Criança (área de especialização em Intervenção Psicossocial com Crianças, Jovens e Famílias)

A intervenção precoce: uma aliada dos cuidados de saúde prestados nas Unidades de Cuidados Intensivos Neonatais?

Dissertação de mestrado em Educação Especial (área de especialização em Intervenção Precoce)

Improving influenza vaccination rates in the elderly.

BACKGROUND: Vaccination coverage for influenza in the elderly remains low when the physician is the only person responsible for immunization. Integration of other health care workers may improve the coverage rate of at-risk groups. OBJECTIVES: To estimate vaccination coverage rate by using a strategy based on the systematic intervention of a health care professional proposing vaccination before the doctor's consultation, to evaluate the changes in coverage rates before and after introduction of this strategy, and to assess the feasibility of this intervention and the achieved coverage rate in family physician offices. STUDY DESIGN: Prospective study in a medical outpatient clinic and 5 family physician practices in Switzerland. POPULATION: Participants consisted of all patients 65 years or older attending a medical outpatient clinic during the vaccination period in 1999 (n = 401), patients 65 years or older regularly followed at a medical outpatient clinic in 1998 and 1999 (n = 195), and patients 65 years or older presenting to 5 family physician offices in 1999 (n = 598). OUTCOME MEASURED: Rates of vaccination coverage. RESULTS: Among all participants, vaccination coverage rates in 1999 were 85% at the medical outpatient clinic and 83% in family physician offices. Among participants regularly followed at the medical outpatient clinic, vaccination coverage increased from 48% in 1998 to 76% in 1999. Rates of refusal were 9% at the medical outpatient clinic and 14% in the family physician offices. CONCLUSIONS: The systematic intervention of a health care professional to suggest vaccination before the doctor's visit is an effective measure to achieve high coverage rate. Such a strategy also improves outpatient clinic or private practice efficiency by reducing pressures on physicians.

Pediatric patient classification system: improvement of an instrument

Objective Improve the content validity of the instrument for classification of pediatric patients and evaluate its construct validity. Method A descriptive exploratory study in the measurement of the content validity index, and correlational design for construct validation through exploratory factor analysis. Results The content validity index for indicators was 0.99 and it was 0.97 for graded situations. Three domains were extracted in the construct validation, namely: patient, family and therapeutic procedures, with 74.97% of explained variance. The instrument showed evidences of content and construct validity. Conclusion The validation of the instrument occurred under the approach of family-centered care, and allowed incorporating some essential needs of childhood such as playing, interaction and affection in the content of the instrument.


Nurses’ attitudes regarding the importance of families in pediatric nursing care

Affective, cognitive and behavioral components affect nurses´ attitudes to include families in the care processes. The purpose of this study was to investigate the attitudes of nurses about the importance of including families in nursing care. Data collection was performed in pediatric and maternal-child unit of a Brazilian university hospital. A sample of 50 nurses completed the Portuguese version of the instrument Families’Importance in Nursing Care-Nurses’ Attitudes (FINC-NA). The results indicated that nurses have supportive attitudes regarding families participation in nursing care. Attitudes of lower support for involving families in nursing care were found among nurses with older age, more time in the profession and who had no previous contact with contents related to Family Nursing. The application of the instrument in other contexts of assistance may help to illuminate important aspects of the challenges to implementing a family-centered approach in clinical practice.





The Child Welfare Decategorization Program, August 2010

This Handbook is designed to outline the purposes, goals, structure, and operational procedures for Iowa’s Child Welfare Decategorization Program. The Handbook incorporates experiences gained since the inception of Decategorization in 1987. As with any initiative that began on a pilot basis, Decategorization has been an evolving program in which parameters and procedures have undergone modifications to achieve the desired results. The Handbook serves as a guidebook for implementation and operation of Decategorization and a means of communicating information on program parameters and procedures. Purposes of Decategorization of child welfare and juvenile justice funding is an initiative intended to establish systems of delivering human services based upon client needs to replace systems based upon a multitude of categorical funding programs and funding sources, each with different service definitions and eligibility requirements. Decategorization is designed to redirect child welfare and juvenile justice funding to services which are more preventive, family centered, and community-based in order to reduce use of restrictive approaches that rely on institutional, out-of home, and out-of-community care.

Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención

The aim of this paper is to present cDVF-E scales for families with children of 0-18 years, on one hand, and over 18 years, on the other, that researchers from five spanish universities have recently validated and standardized to the spanish population. To this end, first, the importance of the construct of quality of family life and its implications for research and practice should be emphasized. Afterwards, we introduce the first international initiatives measuring the quality of family life developed in the first decade of this century. Then the features, dimensions and psychometric properties of the scales are synthetically presented. Finally, the authors encourage practitioners and organizations to use these tools in the context of family-centered model and provides, as a conclusions, some considerations

Les stratégies de compréhension lors de lectures à voix haute : accompagnement parental auprès d’enfants de cinq ans

Le rôle du parent est important dans le développement de la compétence en lecture de jeunes enfants et lire à son enfant est une pratique de littératie familiale fortement encouragée par la société. Cette étude a pour objectif de décrire cet accompagnement parental notamment en lien avec les stratégies de compréhension utilisées entre un parent et son enfant lors de la lecture à voix haute. Nous avons observé 10 parents lire un abécédaire, un texte narratif avec intrigue, un texte narratif sans intrigue et un texte informatif à leur enfant de cinq ans. Il s’avère que les stratégies utilisées par les parents et leurs enfants diffèrent selon le genre de texte. Les élèves ayant de faibles résultats (reconnaissance des lettres et de leurs sons, rappel du texte, compréhension du vocabulaire réceptif et de la morphosyntaxe) utilisent également moins de stratégies de compréhension lors de la lecture à voix haute que les enfants présentant de meilleurs résultats. Nous avons également vérifié l’étayage offert par les parents d’enfants présentant de bonnes et de faibles compétences en lecture. Ces deux groupes de parents se distinguent par la qualité et la fréquence de l’utilisation des stratégies de compréhension. En effet, nous remarquons que les parents qui guident leurs enfants dans l’utilisation des stratégies de compréhension sont davantage associés aux enfants démontrant une bonne compétence en lecture. Finalement, nous avons aussi vérifié les pratiques de littératie familiale (temps d’exposition et accessibilité à la lecture, modélisation par les membres de la famille, attitude des parents envers la lecture et mise en place d’activité favorisant la conscience phonologique de l’enfant). Seule la mise sur pied d’activités favorisant la conscience phonologique a pu être liée au rendement des enfants.

Intervention familiale visant à faciliter le processus entourant la décision de non-réanimation de leur enfant atteint d'une condition médicale complexe

Travail dirigé présenté à la Faculté des sciences infirmières en vue de l’obtention du grade de Maîtrise ès sciences (M. Sc.) en sciences infirmières, option expertise-conseil

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.