Benestar i acolliment d'infants en família extensa: percepcions, avaluacions i aspiracions dels principals agents implicats

La importància que els acolliments en família extensa han assolit en la darrera dècada dins dels sistemes de protecció infantil en la major part dels països occidentals, contrasta tant amb l'escassa i recent investigació científica com amb els pocs recursos destinats als infants i adolescents que hi són acollits. L'objectiu general de la tesi ha estat el d'aprofundir en el coneixement i comprensió d'aquest fenomen dins del sistema de protecció infantil a Catalunya. La present recerca s'ha realitzat recollint els punts de vista dels tres grans conjunts d'agents socials implicats: els acollidors, els infants i adolescents acollits i els professionals dels EAIAs (Equips d'Atenció a la Infància i Adolescència) que els atenen; explorant les seves percepcions, avaluacions, expectatives i satisfaccions referides a l'acolliment. Així mateix, l'estudi s'ha dut a terme amb una metodologia de disseny mixt, recollint dades quantitatives i qualitatives. Els resultats mostrats ens suggereixen un seguit d'implicacions per a la pràctica i ens obren nous reptes de recerca, per tal de promoure, en definitiva, la qualitat de vida dels nois i noies i dels seus acollidors.

Jogo e desenvolvimento da criança : sua relevância na prática

O presente estudo aborda a temática do jogo e da sua importância no desenvolvimento da criança. Com ele pretendeu-se perceber como estão organizados os Jardim de Infância e qual a importância do jogo na ação da criança, certificar que os Educadores de Infância se preocupam por realizar um trabalho diário de qualidade, utilizando as estratégias e atividades adequadas às características das crianças com quem trabalham, bem como esclarecer o que pensam sobre o jogo no desenvolvimento da criança, perceber o que pretendem os encarregados de educação do Jardim de Infância e como encaram o que os seus filhos realizam durante o dia no mesmo. Assim sendo, realizou-se um estudo em que se começou por estudar a importância do jogo no desenvolvimento infantil, para fundamentar as razões da sua importância, para, a seguir, observar e verificar a importância atribuída pelo Educador de Infância ao jogo e saber o que pensam da sua relação com o desenvolvimento da criança, observar a forma como se organizam os Jardins de Infância e a intencionalidade das atividades estipuladas pelo Educador de Infância e analisar a conceção que os encarregados de educação têm sobre as atividades realizadas no Jardim de Infância, o jogo e o desenvolvimento da criança. Com base nos resultados obtidos, concluiu-se que as instituições escolares, Educadores de Infância e encarregados de educação vão tendo alguma consciência de que o jogo pode proporcionar múltiplos desenvolvimentos na criança, sendo por isso essencial na vida da mesma. Contudo será importante referir que, embora exista consciência, a inclusão do jogo na vida da criança nem sempre é a ideal e muitas vezes esquecida é preterida em função de outras atividades mais estruturadas pelos responsáveis.

Technological Solutions Potentially Influencing the Future of Long-Term Care. ENEPRI Research Report No. 114, April 2012

This report provides a forecast of the potential direct and indirect influences of various kinds of technologies on the LTC milieu, answering the following question: from a technology-driven perspective: “Consider each technological solution. What could be its future usage in the LTC sector?” Future technological deployments will induce changes in the respective roles of the care recipient and of the formal and informal carers, with an impact on three major concerns: the transformation of the care recipient into a proactive subject, the augmented potentiality for home care and the new functions that informal carers could assume.

Emotional interactions and an ethic of care: caring relations in families affected by HIV and AIDS

In the context of global processes of economic restructuring, the HIV and AIDS epidemic and socio-cultural constructions of care, many women and young people in low-income households have been drawn into caring roles within the family. Drawing on the literature on an ethics of care, emotional geographies and embodiment, this paper examines the emotional dynamics of the caring process in families affected by HIV and AIDS. Based on the perspectives of both ‘caregivers’ and ‘care-receivers’ from research undertaken in Namibia, Tanzania and the UK, we examine the everyday practices of care that women and young people are engaged in and explore how emotions are performed and managed in caring relationships. Our research suggests caregivers play a crucial role in providing emotional support and reassurance to people with HIV, which in turn often affects caregivers' emotional and physical wellbeing. Within environments where emotional expression is restricted and HIV is heavily stigmatised, caregivers and care-receivers seek to regulate their emotions in order to protect family members from the emotional impacts of a chronic, life-limiting illness. However, whilst caregiving and receiving may lead to close emotional connections and a high level of responsiveness, the intensity of intimate caring relationships, isolation and lack of access to adequate resources can cause tensions and contradictory feelings that may be difficult to manage. These conflicts can severely constrain carers' ability to provide the ‘good care’ that integrates the key ethical phases in Tronto's (1993) ideal of the caring process.

Inclusion, social networks and resilience: strategies, practices and outcomes for disabled children and their families

This paper explores the strategies of service providers and the benefits reported by disabled children and their parents/carers in three Children's Fund programmes in England. Based on National Evaluation of the Children's Fund research, we discuss how different understandings of ‘inclusion’ informed the diverse strategies and approaches service providers adopted. While disabled children and families perceived the benefits of services predominantly in terms of building individual children's resilience and social networks, the paper highlights the need for holistic approaches which have a broad view of inclusion, support children's networks and tackle disabling barriers within all the spheres of children's lives.

Developing responsive preventative practices: key messages from children's and families' experiences of the Children's Fund

As part of the prevention and social inclusion agenda, the Children's Fund, set up in 2000, has developed preventative services for children at risk of social exclusion. Drawing on a large qualitative dataset of interviews conducted in 2004/05 with children, young people and their parents/carers who accessed Children Fund services, this article analyses key practices and approaches valued by children and parents. These included: specialist support tailored to individual support needs, family-oriented approaches, trusting relationships with service providers, multi-agency approaches and sustainability of services. Finally, the article draws out key lessons for the future development of preventative services.

Young caregivers in the context of the HIV/AIDS pandemic in sub-Saharan Africa

Against a background of rising adult mortality and morbidity in the context of the HIV/AIDS pandemic in sub-Saharan Africa, this paper provides both quantitative and qualitative evidence for the existence of a largely neglected group of young people with increased responsibility for caregiving. Using questionnaire surveys, focus groups, storyboards and in-depth interviews in three studies across Southern and Eastern Africa some young people in Lesotho, Tanzania and Zimbabwe are found to devote considerable time and energy to caring for sick members of their households. Examination of the tasks carried out by these youngsters finds them to be burdened beyond usual familial and societal expectations of children's 'normal' contributions to the reproduction of households via domestic chores and suchlike. It is concluded that these young people can be described as 'young carers'. The three studies are presented to illuminate different sociospatial aspects of caregiving by young people. First, using qualitative data from Lesotho the range of caring tasks young caregivers; perform for care recipients - usually a grandmother, parent, or sibling - is identified. Second, the impact caregiving responsibilities have on children's primary school attendance is examined using survey data from Tanzania. Third, the wider negative and positive impacts of caregiving including loss of friends and gaining of emotional maturity for young carers and their households is explored with in-depth individual interviews from Zimbabwe. Finally, suggestions are made for further research to deepen understanding of the geographies of caring within the context of the population geographies of the HIV/AIDS pandemic in sub-Saharan Africa and beyond. Copyright (c) 2006 John Wiley & Sons, Ltd.

Caring at a distance: Gift Theory, aid chains and social movements

This paper takes as its starting point recent work on caring for distant others which is one expression of renewed interest in moral geographies. It examines relationships in aid chains connecting donors/carers in the First World or North and recipients/cared for in the Third World or South. Assuming predominance of relationships between strangers and of universalism as a basis for moral motivation I draw upon Gift Theory in order to characterize two basic forms of gift relationship. The first is purely altruistic, the other fully reciprocal and obligatory within the framework of institutions, values and social forces within specific relationships of politics and power. This conception problematizes donor-recipient relationships in the context of two modernist models of aid chains-the Resource Transfer and the Beyond Aid Paradigms. In the first, donor domination means low levels of reciprocity despite rhetoric about partnership and participation. The second identifies potential for greater reciprocity on the basis of combination between social movements and non-governmental organizations at both national and trans-national levels, although at the risk of marginalizing competencies of states. Finally, I evaluate post-structural critiques which also problematize aid chain relationships. They do so both in terms of bases-such as universals and difference-upon which it might be constructed and the means-such as forms of positionality and mutuality-by which it might be achieved.

Causes of preventable drug-related hospital admissions: a qualitative study

Objective: To explore the causes of preventable drug-related admissions (PDRAs) to hospital. Design: Qualitative case studies using semi-structured interviews and medical record review; data analysed using a framework derived from Reason's model of organisational accidents and cascade analysis. Participants: 62 participants, including 18 patients, 8 informal carers, 17 general practitioners, 12 community pharmacists, 3 practice nurses and 4 other members of healthcare staff, involved in events leading up to the patients' hospital admissions. Setting: Nottingham, UK. Results: PDRAs are associated with problems at multiple stages in the medication use process, including prescribing, dispensing, administration, monitoring and help seeking. The main causes of these problems are communication failures ( between patients and healthcare professionals and different groups of healthcare professionals) and knowledge gaps ( about drugs and patients' medical and medication histories). The causes of PDRAs are similar irrespective of whether the hospital admission is associated with a prescribing, monitoring or patient adherence problem. Conclusions: The causes of PDRAs are multifaceted and complex. Technical solutions to PDRAs will need to take account of this complexity and are unlikely to be sufficient on their own. Interventions targeting the human causes of PDRAs are also necessary - for example, improving methods of communication.

Is NHS Direct meeting the needs of mental health callers?

Background: NHS Direct is a new service that offers 24-hour advice from trained nurses. The National Service Framework for Mental Health and the National Strategy for Carers both mention NHS Direct as an important source of support for people with mental health problems. Aims: This paper reports findings from an evaluation of the Department of Health's NHS Direct mental health initiative. This initiative was established to ensure that NHS Direct can meet the needs of callers with mental health problems by offering additional training to all staff and improving the database of mental health services. Method: The findings reported here are based on routine computer data provided by 12 out of 17 NHS Direct sites, 552 data forms completed by nurse advisers from the 17 sites, and 111 questionnaires administered over the telephone with callers to the 17 sites. Results: Mental health calls accounted for 3% of NHS Direct's workload, although these calls were often longer and more complex than other calls. The majority of callers to the service were in touch with other services for their mental health problems (59%), typically their GP. Most callers had 'moderate' mental health problems, as indicated by the Global Assessment of Functioning Scale. Generally callers were satisfied with the service they received, although satisfaction was lower in some areas than previous studies of NHS Direct. Conclusions: Improvements could be made in the mechanisms for referring callers on to other services, and training to increase nurse advisers' knowledge of mental health problems.

Health-related quality of life in Huntington's disease: a comparison of two generic instruments, SF-36 and SIP

Whereas several clinical endpoints in monitoring the response to treatment in patients with Huntington's disease (HD) have been explored, there has been a paucity of research in the quality of life in such patients. The aim of this study was to validate the use of two generic health-related quality of life instruments (the Short Form 36 health survey questionnaire [SF-36] and the Sickness Impact Profile [SIP]) and to evaluate their psychometric properties. We found that both instruments demonstrated acceptable convergent validity and reliability for patients and carers. However, there was an advantage in using the SF-36 because of its more robust construct validity and test-retest reliability; furthermore, motor symptoms appeared to influence some strictly nonmotor dimensions of the SIP. On a pragmatic level, the SF-36 is shorter and quicker to administer and, therefore, easier for patients at various stages of the disease to complete. Thus, the SF-36 would appear to be the recommended instrument of choice for patients with HD and their carers, although further work needs to be done to investigate the sensitivity of this instrument longitudinally. (C) 2004 Movement Disorder Society.

Huntington's disease patients have selective problems with insight

The objective of this study was to determine insight in patients with Huntington's disease (HD) by contrasting patients' ability to rate their own behavior with their ability to rate a person other than themselves. HD patients and carers completed the Dysexecutive Questionnaire (DEX), rating themselves and each other at two time points. The temporal stability of these ratings was initially examined using these two time points since there is no published test-retest reliability of the DEX with this Population to date. This was followed by a comparison of patients' self-ratings and carer's independent ratings of patients by performing correlations with patients' disease variables, and in exploratory factor analysis was conducted on both sets of ratings. The DEX showed good test-retest reliability, with patients consistently and persistently underestimating the degree of their dysexecutive behavior, but not that of their carers. Patients' self-ratings and caters' ratings of patients both showed that dysexecutive behavior in HD can be fractionated into three underlying components (Cognition, Self-regulation, Insight), and the relative ranking of these factors was similar for both data sets. HD patients consistently underestimated the extent of only their own dysexecutive behaviors relative to carers' ratings by 26%, but were similar in ascribing ranks to the components of dysexecutive behavior. (c) 2005 Movement Disorder Society.

Williams Syndrome: the extent of agreement between parent and self report of psychological difficulties

Background and Objectives: People with Williams syndrome (WS) have been reported by their carers to have problems with attention, anxiety and social relationships. People with WS have been shown to report their anxieties. This study extends our knowledge of how people with WS see themselves in terms of behaviour and social relationships. Methods: A survey using self and parent report forms of the Strengths and Difficulties Questionnaire. Results: Both parents and individuals with WS (N = 31) reported difficulties in emotional disorder and hyperactivity symptoms and strengths in prosocial behaviours such as altruism and empathy. They disagreed about peer problems. Conclusions: People with WS understand some but not all of their difficulties. In particular they fail to recognize their social difficulties which may lead them to be vulnerable to exploitation.

Cloud based global positioning system as a safety monitor for dementia patients

The aim of using GPS for Alzheimer's Patients is to give carers and families of those affected by Alzheimer's Disease, as well as all the other dementia related conditions, a service that can, via SMS text message, notify them should their loved one leave their home. Through a custom website, it enables the carer to remotely manage a contour boundary that is specifically assigned to the patient as well as the telephone numbers of the carers. The technique makes liberal use of such as Google Maps.

Does a structured gardening programme improve well-being In young-onset dementia? A preliminary study

Introduction: Young onset dementia (YOD) affects about 1 in 1500 people aged under 65 years in the UK. It is associated with loss of employment, independence and an increase in psychological distress. This project set out to identify the benefits of a 2 hour week) structured activity programme of gardening for people with YOD. Method: A mixed qualitative quantitative study of therapeutic gardening for people with YOD, measuring outcomes for both participants with YOD and their carers. 12 participants were recruited from a county wide older adults mental health service, based on onset of dementia being before 65 years of age(range 43-65 years). 2 dropped out and 1 died during the project. Measures included the Mini Mental State Examination, Bradford Well Being Profile, Large Allen Cognitive Level Screen and Pool Activity Level. Results: Over a one year period the carers of the people with YOD found that the project had given participants a renewed sense of purpose and increased well-being. while cognitive functioning declined. Conclusions: This study suggests that a meaningful guided activity programme can maintain or improve well-being in the presence of cognitive deterioration.