A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol.

Introduction and background: Survival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care. Methods and analysis: The RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients’ needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the ‘Timing it Right’ framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process. Ethics and dissemination: The protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

Do Spanish informal caregivers come to the rescue of dependent people with formal care unmet needs?

This paper analyses the effect of unmet formal care needs on informal caregiving hours in Spain using the two wavesof the Informal Support Survey (1994, 2004). Testing for double sample selection from formal care receipt and theemergence of unmet needs provides evidence that the omission of either variable would causes underestimation of thenumber of informal caregiving hours. After controlling for these two factors the number of hours of care increaseswith both the degree of dependency and unmet needs. More importantly, in the presence of unmet needs, the numberof informal caregiving hours increases when some formal care is received. This result refutes the substitution modeland supports complementarity or task specificity between both types of care. For a given combination of formal careand unmet needs, informal caregiving hours increased between 1994 and 2004. Finally, in the model for 2004, theselection term associated with the unmet needs equation is larger than that of the formal care equation, suggestingthat using the number of formal care recipients as a quality indicator may be confounding, if we do not complete thisinformation with other quality indicators.

Life on the Edge: Patterns of Formal and Informal Help to Older Adults in the United States and Sweden

Objectives Our objective in this study was to compare assistance received by individuals in the United States and Sweden with characteristics associated with low, moderate, or high 1-year placement risk in the United States. Methods We used longitudinal nationally representative data from 4,579 participants aged 75 years and older in the 1992 and 1993 waves of the Medicare Current Beneficiary Survey (MCBS) and cross-sectional data from 1,379 individuals aged 75 years and older in the Swedish Aging at Home (AH) national survey for comparative purposes. We developed a logistic regression equation using U.S. data to identify individuals with 3 levels (low, moderate, or high) of predicted 1-year institutional placement risk. Groups with the same characteristics were identified in the Swedish sample and compared on formal and informal assistance received. Results Formal service utilization was higher in Swedish sample, whereas informal service use is lower overall. Individuals with characteristics associated with high placement risk received more formal and less informal assistance in Sweden relative to the United States. Discussion Differences suggest formal services supplement informal support in the United States and that formal and informal services are complementary in Sweden.

A transição de aluno a professor: dificuldades e desafios

Dissertação apresentada à Escola Superior de Educação de Lisboa para a obtenção do Grau de Mestre em Ciências da Educação - especialidade Supervisão em Educação

Expectativas de responsabilidade filial e orientação da responsabilidade no cuidado aos idosos

RESUMO: Muitos desenvolvimentos demográficos e estruturais ocorreram nas relações intergeracionais, os quais provocaram um impacto nas ligações familiares, tais como o aumento da longevidade e as alterações da dinâmica estrutural e social da família, tendo sido colocado em causa a vitalidade das obrigações familiares e solidariedade familiar, nomeadamente entre pais e filhos adultos. Assim, com este estudo pretendeu-se verificar a presença de solidariedade entre pais e os seus filhos adultos, assim como as expectativas de responsabilidade filial dos pais e as suas opiniões e preferências no que se refere à orientação da responsabilidade para família/ serviços públicos no cuidado aos idosos. De forma a alcançar os objectivos, foi aplicado um questionário a 97 alunos, da Universidade Sénior da Póvoa de Santa Iria, com 55 ou mais anos e que tivessem pelo menos um filho adulto. Foi possível chegar à conclusão de que existe solidariedade entre pais e filhos adultos, assim como os pais consideram que existe uma responsabilidade mista (família/Estado) no cuidado aos idosos e que preferem os apoios formais em detrimento dos informais (familiares) – contrariando a orientação familística. Contudo, apesar disso continuam a apresentar expectativas elevadas em relação à responsabilidade que os filhos devem ter para com os pais, nomeadamente a nível da dimensão de apoio emocional, sendo a dimensão de apoio instrumental a excepção. Desta forma, é possível concluir que há uma tendência por parte da população inquirida em preferir a complementaridade de apoios formais e informais, com consequente especialização de tarefas: instrumental e emocional, respectivamente-----------ABSTRACT: Intergenerational relations have been affected by demographical and structural changes that had impact on family relationships. The increase in life expectancy and the changes in the families’ structural and social dynamics have put at risk the vitality of family obligations and solidarity, namely between parents and adult children. Therefore, this research aimed at studying the existence of solidarity between parents and adult children as well as the parents’ expectations towards their children’s responsibilities and their views and preferences on family and welfare state responsibility as far as elderly people are concerned. In order to achieve this, a questionnaire was devised and subsequently applied to 97 participants attending the Universidade Sénior in Póvoa de Santa Iria, aged 55 or older, with at least one adult child. The results indicate that there is solidarity between parents and adult children and that parents consider that both the family and the state should share the responsibility towards elderly people. Moreover, the study proves that formal support is preferred to the detriment of an informal one (family), which contradicts the familistic approach. However, parents evince high expectations as far as children responsibility towards them is concerned, specially in terms of emotional support. This does not apply, however, to the instrumental support domain. In conclusion, the study indicates that the participants tend to prefer the complementariness of formal and informal support with subsequent task specialisation: instrumental and emotional, respectively.

A família cuidadora perante a dependência do seu familiar idoso

RESUMO: O envelhecimento demográfico tem vindo a acentuar-se nas últimas décadas. É expectável um aumento mais acentuado no número de pessoas com mais de 80 anos, o que importará maiores custos médicos, mais suporte familiar e comunitário, maior probabilidade de cuidados de longa duração devido à prevalência de doenças crónicas. Conduzindo a uma maior procura de apoios formais e informais. A preocupação com aqueles que atingem idades avançadas tem vindo a suscitar inquietação face à urgência de necessidades de suporte, sentidas por familiares, amigos e vizinhos. A questão central que orientou este estudo diz respeito aos familiares cuidadores ou gestores de cuidados do seu familiar idoso dependente e ao idoso dependente. Procurei identificar quais as dificuldades sentidas e as estratégias desenvolvidas pela família cuidadora ou gestora dos cuidados prestados ao idoso dependente, descrever e caracterizar a dependência destes idosos. É um estudo transversal, exploratório, descritivo, de abordagem quantitativa e qualitativa. Apliquei um questionário a 25 familiares cuidadores ou gestores dos cuidados a idosos dependentes, internados nos serviços de medicina e cirurgia de um hospital privado, Hospital CUF Descobertas, possuindo previamente alguma dependência. Dos dados obtidos ressalta que as principais dificuldades sentidas pelos familiares cuidadores ou gestores dos cuidados são essencialmente na gestão do tempo e a saúde do cuidador. Estratégias mais desenvolvidas foram o recurso a empregada doméstica e a outros familiares. Posso Concluir que há uma tendência preferencial por parte da família, na complementaridade de apoios informais e formais para prestar os cuidados ao idoso dependente no seio da família.------------ ABSTRACT: Demographic aging has risen progressively over the past decades. The number of people over the age of 80 years old is expected to increase considerably and surely result in the rise of medical costs, the growing need for additional community and family support, higher probability of long-term medical care due to the increased risk of chronic disease and the seeking of help regarding formal and informal support. The concern with persons that attain advanced age has brought about a certain degree of uneasiness regarding the urgency of the need of support systems felt by family members, friends, neighbours. The main topic that has steered this study pertains to the family caregivers or the care managers of dependant elderly relatives and dependant elderly persons. I endeavoured to identify encountered difficulties and the strategies undertaken by family caregivers or care managers in regard to the elderly dependant, to describe and characterize the nature of the dependency of these elderly persons. Furthermore, this study could be defined as being wide-reaching, exploratory and descriptive, by means of a qualitative and quantitative approach. I utilized a questionnaire that involved 25 family caregivers and care managers of dependant elderly (hospitalized in medical or surgery wards of private hospital, CUF Descobertas Hospital and suffering from some type of dependency). Conclusions: The main difficulties felt by family caregivers or care managers are primarily related to time management and the health of the caregiver. Let it be mentioned that more developed strategies were adopted such as the employment/recruitment of a housemaid and the help of other relatives. In sum, it can be concluded that there is a preferential tendency by families in seeking the complementarity of informal and formal support in order to provide the necessary care to the dependent elderly in the family environment.

Intervenção precoce na perturbação do espetro do autismo: preocupações e apoios das famílias

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

Intervenção precoce: as preocupações e os apoios sociais das mães do Vale do Sousa

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

The demands of family caregivers of elderly individuals with dementia

The purpose of this cross-sectional observational study was to identify characteristics of caregivers of elderly people with dementia, types of care demands and to relate demands to the stage of dementia. The study was carried out in 2004 with 104 older adults and 90 caregivers in Ribeirão Preto, state of São Paulo. The OARS instrument was utilized and a questionnaire answered by caregivers. Among older adults, 66.3% were female, aged 75.5 years in average and 86.5% had caregivers. Eighty percent of the caregivers were women family members, aged 52.3 years in average. They spent 15.10 hours/day with care, without help. An important relationship was observed between caregiver's burden, physical and emotional effort and stage of dementia. Emotional overburden was higher at dementia early and late stages, this difference was statistically non-significant. Results reveal the urgent need to plan formal and informal support strategies to caregivers of Brazilian elderly people with dementia.

Pares de nadons prematurs: afrontament de la situació i influència dels suports formals i informals

Lʼobjectiu general de la investigació és conèixer com viuen els pares lʼingrés hospitalari dʼun fill prematur en néixer, com afronten aquest fet així com la influència de les xarxes de suport formal i informal dʼaquesta població

Bullying, cyberbullying & sexuality: “Everyone needs a good friend”

Bullying is a pervasive social issue that occurs in numerous contexts and is particularly recognized in populations that are easily targeted. Individuals who identify as Lesbian, Gay, Bisexual, and Questioning (LGBQ) are at an increased risk of victimization. Using mixed methodology involving 40 participants (N= 20) LGBQ and (N = 20) non-LGBQ and 10 subsequent in-depth interviews, this study examined prevalence rates of (cyber)bullying on the basis of sexual orientation. Results indicate a high frequency of direct and indirect bullying of LGBQ as compared to non-LGBQ youth. Ten interviews revealed themes that precipitate victimization such as the lack of understanding of LGBQ issues, educational shortfalls, societal and stereotypical beliefs. Results highlight the importance and need of formal and informal support (i.e. peer and online support).

Les Réseaux de la Pénombre:Typologie de l'aide reçue par les Personnes Âgées

Nous nous sommes intéressés à l’analyse et à la mise à jour d’une typologie de l’aide reçue par les personnes âgées de 65 ans et plus vivant à domicile. Cette étude secondaire s’est basée sur les données recueuillies dans deux milieux francophones, Hochelaga-Maisonneuve (HM) et Moncton (MCT). La collecte de données avait été faite par l’entremise d’un questionnaire administré par entrevue face à face. Les deux objectifs, de cette thèse sont : 1) Établir une typologie des réseaux d’aide, résultant de la combinaison des sources d’aide et des tâches accomplies ; 2) Identifier les principaux déterminants d’appartenance aux réseaux. La typologie obtenue met en relation les ressources, formelles ou informelles, utilisées par les personnes âgées et l’aide instrumentale reçue. La capacité ou l’incapacité à effectuer neuf activités de la vie quotidienne et huit de la vie domestique ont servi à évaluer l’aide reçue. Six ressources formelles et dix informelles ont été examinées selon qu’elles étaient les 1ères, 2ièmes ou 3ièmes sources d’aide utilisées par les personnes âgées. L’approche privilégiée s’est inspirée de celle des réseaux sociaux et du modèle de Pescosolido. C’est l’influence des caractéristiques sociodémographiques des personnes âgées, de leurs états de santé, de leurs habitudes de vie sur leurs réseaux qui nous ont intéressés. Les résultats sont présentés à chaque fois pour nos deux milieux séparément. Nous commençons par un descriptif des sources d’aide utilisées et des aides reçues. Puis les profils des sources d’aide utilisées et des activités accomplies sont exposés pour l’ensemble des personnes âgées. Ces profils servent de base pour obtenir notre typologie. Elle comprend cinq catégories. Ces catégories sont toutes composées de personnes âgées faisant appel à de l’aide formelle, informelle ou mixte pour accomplir des tâches uniques ou multiples. La première catégorie « Transitoire », comprend 39% (HM) et 46% (MCT) des personnes âgées qui débute un processus d’incapacité. Elles font appel à des ressources informelles pour accomplir une tâche unique. La deuxième catégorie « Personnes âgées seules » en rassemble 14% (HM et MCT), majoritairement des femmes, avec peu d’incapacités. Ces dernières utilisent de l’aide formelle pour une tâche unique. La troisième catégorie « Familiale » regroupe 12% (HM et MCT) des personnes âgées bien entourées qui ont plusieurs incapacités. Ces gens font appel à des sources d’aide informelles pour réaliser des tâches multiples. La quatrième catégorie « Très fragile » rassemble 30% (HM) et 25% (MCT) des personnes âgées peu entourées ayant beaucoup d’incapacités. Elles utilisent des ressources d’aide mixtes pour effectuer des tâches multiples. La cinquième catégorie « Pré institutionnel » comprend 4% (HM et MCT) des personnes âgées qui ont le plus d’incapacités et qui sont seules. Ces gens font appel à de l’aide formelle pour des tâches multiples. Les déterminants d’appartenance à ces catégories proviennent des blocs sociodémographiques, état de santé et réseaux sociaux de notre modèle théorique. Une des contributions importantes de cette thèse a été de pouvoir identifier cinq catégories bien distinctes composant une typologie de l’aide reçue, indépendamment du milieu, par des personnes âgées vivant à domicile. MOTS CLÉS : Typologie, réseaux sociaux, personnes âgées, services de soins, formels, informels, aides reçues, sources d’aide, incapacités, déterminants d’appartenance, fragilité

How Many Elders Receive Assistance?: A Cross-National Comparison

To examine models of informal support received by elders in the United States and Sweden and to test whether differences in informal support appear to stem from demographic differences between the nations alone or whether cultural and historical differences must also be considered.

Exploring Assistance in Sweden and the United States

Few international comparisons of health services are performed using microlevel data. Using such data, this paper compares the need for and receipt of assistance with activities of daily living (ADLs) in comparable samples in the United States and Sweden, a country with a universal system of community-based services.Design and Methods: Data from national surveys of community residents completed at approximately the same time in each nation are used to create comparable measures of need and assistance. Descriptive and logistic regression analyses compare need and assistance patterns across the nations and identify individual factors that explain receipt of assistance and unmet needs.Results:Our results indicate that a simple story of greater use of paid formal services in Sweden and more unpaid informal use in the United States masks a more complex relationship. Assistance with ADLs seems to be more targeted in Sweden; narrow differences in assistance widen considerably when the analysis is limited to those reporting need. Implications:Although these two different health systems result in similar levels of overall ADL assistance, a detailed microlevel comparison reveals key distinctions. Further microlevel comparisons of access, cost, and quality in cross-national data can further aid our understanding of the consequences of health policy.

Seniors in Society. Strategies to Retain Individual Autonomy

The research project on "Seniors in Society. Strategies to Retain Individual Autonomy" (2002 - 2004) is supported by the Grant Agency of the Czech Republic. It's importance is empha-sized by the relevance of social and economic aspects of demographic ageing of the popula-tion and that of fundamental changes associated with the transformation of Czech society. The objectives of the research are (1) to find out seniors' material and social resources sup-porting their relative autonomy in everyday life, (2) to record their personal expectations from state, community, or formal and informal support and aid institutions, respectively, and (3) to uncover their engagement in social interaction and individual experiencing of the integration into social groups. The data acquired become the base for (4) identifying the typologies corre-sponding to the levels of seniors' social integration (i.e. groups of relatives, friends, neighbours, special-interest and professional groups). By applying qualitative methods, we explore (5) strategies of everyday life and coping with life cycle events and crisis within par-ticular types. Special attention is paid to the family background of the seniors, including rela-tives in the vertical line. Specifically, we focus on (6) conditions under which family is capa-ble and willing to help or actually is helping it's oldest members, as well as on their interpre-tation within (7) identified types of the relatives supportive systems.