Rede de cuidado formal e informal do familiar que cuida do paciente em cuidados paliativos oncológicos no domicílio

In the face of advanced oncological disease in palliative care at home, caregivers are mostly family members who are part of the informal system. The lack of guidance and social support exposes them to stress and overload that can affect their health, well-being, quality of life, and contribute to failures in care. The aim is to understand the care networks around the main caregiver in the context of home palliative care and describe the implications of the availability of these networks on the health care of this caregiver. Descriptive and qualitative study, developed at a national reference institute in oncology, in Rio de Janeiro, Brazil. Eighteen informal caregivers of patients with advanced cancer hospitalized in the specialized palliative care clinical ward were interviewed. Ethical approval was obtained. Three categories emerged: Formal support network; Informal support network; and Overload of the main caregiver. The qualitative approach was fundamental for understanding that family members present their own demands in the care process. This study contributes to discussions regarding the role of nursing in promoting the transversalization of care to caregivers.

The relevance of the article is due to the process of progressive aging of the population, so it requires from society to find new ways to work with the elderly and their needs’ realization. The article characterizes the current state of the category of elderly people in Ukrainian society. It is noted that support for the elderly is provided through a variety of resources, for example, formal and informal support networks, volunteering, the state, family, community, and society in general. The formal support network is implemented through the social policy of the state, which is focused on assisting in ensuring the rights of the elderly to their social protection of constitutional rights and freedoms. The aim of the article is to reveal the peculiarities of the needs’ realization of the elderly through formal and informal support networks. Research methods applied: generalization − to study the formal network of support, which is implemented through the social policy of the state and focused on constitutional rights for the elderly and social protection; analysis − combining and representing connections of individual elements, parties, components of a complex phenomenon and so in the comprehension of the whole in its components’ unity. The directions of reforming the system of social services are aimed at an authoritative legal framework, where social protection of the elderly would be enshrined at the appropriate level. They includ: deinstitutionalisation through the creation of a wide network of services and facilities that can provide quality services in the community; involvement of non-governmental organizations in the provision of social services; approach of social services to the place of residence; decentralization of management processes, financing, location of services; empowering older people to choose services and participate in the process; increasing the effectiveness of the provision of social services through the study of needs at the individual level and within individual administrative-territorial units; introduction of quality improvement technologies, including monitoring, evaluation and control.

In this article, we explore temporary foreign workers’ (TFWs) access to and experiences with formal and informal supports in Canada. Our study utilized a participatory action research design and four overlapping phases of data collection: individual interviews with current and former TFWs, focus groups, individual interviews with settlement service agencies, and a cross-sectional survey with current and former TFWs. We used an intersectional theoretical framework to analyze these data and explore ways that TFWs interact with formal and informal sources of support for navigating their precarious immigration status and integration in Canada. Our findings show these supports have the potential to both benefit and harm TFWs, depending on their social positioning and availability of institutional resources. The benefits include information that aids settlement and integration processes in Canada, while the harms include misinformation that contributes to status loss. Future research and policy should recognize the complexity of informal and formal support networks available to TFWs. An absence of government support is apparent, as is the need for increased funding for settlement service agencies that serve these workers. In addition, Canada should better monitor employers, immigration consultants, and immigration lawyers to ensure these agents support rather than oppress TFWs.

BackgroundInformal support is essential for enabling many older people to age in place. However, there is limited research examining the information needs of older adults’ informal support networks and how these could be met through home monitoring and information and communication technologies.ObjectiveThe purpose of this study was to investigate how technologies that connect older adults to their informal and formal support networks could assist aging in place and enhance older adults’ health and well-being.MethodsSemistructured interviews were conducted with 10 older adults and a total of 31 members of their self-identified informal support networks. They were asked questions about their information needs and how technology could support the older adults to age in place. The interviews were transcribed and thematically analyzed.ResultsThe analysis identified three overarching themes: (1) the social enablers theme, which outlined how timing, informal support networks, and safety concerns assist the older adults’ uptake of technology, (2) the technology concerns theme, which outlined concerns about cost, usability, information security and privacy, and technology superseding face-to-face contact, and (3) the information desired theme, which outlined what information should be collected and transferred and who should make decisions about this.ConclusionsOlder adults and their informal support networks may be receptive to technology that monitors older adults within the home if it enables aging in place for longer. However, cost, privacy, security, and usability barriers would need to be considered and the system should be individualizable to older adults’ changing needs. The user requirements identified from this study and described in this paper have informed the development of a technology that is currently being prototyped.

Several studies of frail older people have focused on the relationship between formal and informal care, while others have examined the character of inter-generational relationships. Yet knowledge of the significance of the informal-support networks of older people who receive formal care is still scarce. The aim of this paper was to explore how older Swedes who receive formal elder-care experienced their informal support networks. The findings presented emanate from a qualitative case study. The structural, interaction and functional dimensions of the support networks were the main analytical tools. In the study population, the size of the formal support network varied from one to 12 people (or categories of people), and the size of the informal support network varied from one to six people (or categories of people). The main results demonstrate the importance of informal support with reciprocal relationships, and the value of confidants and emotional support, both of which contribute to feelings of belonging, security and wellbeing. A well-functioning formal and informal support network allows individuals to maintain autonomy in old age, even when they have to depend on help from others.

Domestic violence is a complex and multifaceted phenomenon that has signifi cant impacts on the physical and mental health, as well as on the full development, of women who experience it. It is essential for women in this situation to have a support network in order to overcome the violence. This study aimed to analyse the process of confronting domestic violence by the protagonist of the miniseries ‘MAID’, focusing on her relationships with formal and informal support networks. It was a documentary research conducted through content analysis. The results of this study revealed that the critical path taken by women in situations of violence is infl uenced by various factors, including the lack of resources and family support, and the eff ectiveness of the social assistance network. Furthermore, it was found that formal and informal support networks, when eff ective, constitute a fundamental resource in the process of addressing violence. However, the research identifi ed that the scarcity or absence of family support negatively impacts women’s trajectories, potentially delaying or, in the worst-case scenarios, halting their progress.

The construct of 'dignity' is frequently raised in discussions about quality end of life care for terminal cancer patients, and is invoked by parties on both sides of the euthanasia debate. Lacking in this general debate has been an empirical explication of 'dignity' from the viewpoint of cancer patients themselves. The purpose of the present study was to use factor-analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well-being. The results showed that although the majority of patients had an intact sense of dignity, there were 99 (46%) patients who reported at least some, or occasional loss of dignity, and 16 (7.5%) patients who indicated that loss of dignity was a significant problem. The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life. Subsequent regression analyses of modifiable factors produced a final two-factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance. These results provide empirical support for the dignity model, and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence.

Despite the importance of empowerment and the support network of families who receive early intervention (EI) with a family-centered approach, there is little evidence of a relationship between these two variables and family characteristics that might influence this relationship. This study analyzes the correlations between the perception of empowerment of the families, the family supports used, and the socio-demographic factors of both the child and the family. The study consisted of 44 families who received family-centered EI services. Our results show that families mainly used formal supports, followed by informal supports, and, to a lesser extent, intermediate supports. This indicates that families with children who receive EI preferably use the support network based on EI programs, schools, and professionals. Along with this formal support network, primary caregivers rely on their partners, parents, or friends—that is, the informal support network. Family empowerment was not correlated with age, diagnosis, or the reason for referral to EI; on the other hand, it was related to the supports where the families with the lowest empowerment scores were those who made greater use of formal support over informal support. Early intervention professionals must know, from the first encounter, the type and level of support of each family to enhance the development of the child and promote empowerment in families.

BackgroundIn recent years, people with mental health problems are increasingly using online social networks to receive social support. For example, in online depression communities, patients can share their experiences, exchange valuable information, and receive emotional support to help them cope with their disease. Therefore, it is critical to understand how patients with depression develop online social support networks to exchange informational and emotional support.ObjectiveOur aim in this study was to investigate which user attributes have significant effects on the formation of informational and emotional support networks in online depression communities and to further examine whether there is an association between the two social networks.MethodsWe used social network theory and constructed exponential random graph models to help understand the informational and emotional support networks in online depression communities. A total of 74,986 original posts were retrieved from 1077 members in an online depression community in China from April 2003 to September 2017 and the available data were extracted. An informational support network of 1077 participant nodes and 6557 arcs and an emotional support network of 1077 participant nodes and 6430 arcs were constructed to examine the endogenous (purely structural) effects and exogenous (actor-relation) effects on each support network separately, as well as the cross-network effects between the two networks.ResultsWe found significant effects of two important structural features, reciprocity and transitivity, on the formation of both the informational support network (r=3.6247, P<.001, and r=1.6232, P<.001, respectively) and the emotional support network (r=4.4111, P<.001, and r=0.0177, P<.001, respectively). The results also showed significant effects of some individual factors on the formation of the two networks. No significant effects of homophily were found for gender (r=0.0783, P=.20, and r=0.1122, P=.25, respectively) in the informational or emotional support networks. There was no tendency for users who had great influence (r=0.3253, P=.05) or wrote more posts (r=0.3896, P=.07) or newcomers (r=–0.0452, P=.66) to form informational support ties more easily. However, users who spent more time online (r=0.6680, P<.001) or provided more replies to other posts (r=0.5026, P<.001) were more likely to form informational support ties. Users who had a big influence (r=0.8325, P<.001), spent more time online (r=0.5839, P<.001), wrote more posts (r=2.4025, P<.001), or provided more replies to other posts (r=0.2259, P<.001) were more likely to form emotional support ties, and newcomers (r=–0.4224, P<.001) were less likely than old-timers to receive emotional support. In addition, we found that there was a significant entrainment effect (r=0.7834, P<.001) and a nonsignificant exchange effect (r=–0.2757, P=.32) between the two networks.ConclusionsThis study makes several important theoretical contributions to the research on online depression communities and has important practical implications for the managers of online depression communities and the users involved in these communities.

PC-FACS

"Knock me down a little bit more": Support networks of parents impacted by the child welfare system, a mixed methods study.

The urban-rural dichotomy underpins the common approach in studying environmental conditions influencing older adults’ lives characterized by post-Second World War urban migration in both Italy and the United States (US). However, the traditional opposition urban-rural dichotomy is inadequate to study how the environmental characteristics of a geographical area can account for the heterogeneous profile of its populations and its age distribution. This study aims to overcome the traditional mobility theories as an explanatory dichotomy for understanding the distribution of the age structure of a given population. The extent of a supportive network, and the connection between the place of residence to the proximity of other residential centres can be seen as potential resources for understanding the attractiveness of certain areas for older adults. A large harmonized set of demographic and socio-economic data were collected from the Italian National Institute of Statistics (ISTAT) and the American Community Survey (ACS). An analysis at the Italian municipality- and US county-level finds the population over 75 years old are overrepresented in rural areas of both countries as would be expected by available employment opportunities, but considerable heterogeneity among both urban and rural areas exist. In particular, rural more than urban settings are based on an informal support network that is argued to rely on human proximity to produce successful aging in the community. The variation in population of older adults in rural areas, therefore, might have implications on how to achieve age-friendly communities, aside from population’s traditional mobility theories and formal support network.

Este estudo tem como objetivo realizar uma revisão integrativa de artigos nacionais e internacionais sobre o tema da transição para a paternidade publicados entre 2006 e 2014. Foram consultadas as bases de dados EBSCO, PsycINFO, SciELO Regional e PEPSIC, resultando em 25 artigos indexados, que foram analisados em relação ao ano de publicação, país, metodologia, temática e resultados. Os resultados foram agrupados em quatro grandes grupos, intitulados: “o pai consigo mesmo”, “o pai, a mãe e o bebê”, “o pai e a rede de apoio formal” e “o pai, o trabalho e a sociedade”. No grupo, “o pai consigo mesmo”, destaca-se a vivência da paternidade como uma revolução interna, acompanhada de intensa sobrecarga emocional, ambivalência, solidão e idealização da relação pai-bebê. No grupo, “o pai, a mãe e o bebê”, percebe-se uma intensa transformação na vida conjugal, no qual o pai tende a ser mais ativo na relação com o bebê, porém modulado pela presença materna. No grupo “o pai, o trabalho e a sociedade”, percebemos a falta de preparo dos profissionais para lidar com as demandas paternas, bem como a inexistência de políticas sociais e de saúde voltadas à relação pai-bebê. No grupo “o pai, o trabalho e a sociedade”, destacamos o uso de redes informais de apoio e o surgimento de modelos horizontais de identificação paterna. Foram discutidos tendências e hiatos nas pesquisas atuais no campo da transição para a paternidade, no sentido da constituição de um novo pai.

From the outset, providing support for parents has been a key feature of New Labour's policy agenda, but 'good' parenting, and child health and well-being are often undermined by the stresses associated with poverty. Moreover, there may be a gap between policy aims, and the perceptions and motivations of those intended to benefit. Drawing on a systematic review of qualitative studies of low-income parents, the present paper explores their experiences of informal and formal support networks, considering their strengths and weaknesses in the context of poverty. Traditional systematic review methods were used to locate and critically appraise 12 UK qualitative studies, which took as their focus parents' subjective experiences of caring for children in impoverished circumstances. Meta-ethnographic methods were then used to produce a qualitative meta-synthesis of findings. Exploring the similarities and differences in parents' accounts across studies identified positive and negative aspects of social support as a resource for poor parents. The review suggests that naturally occurring support systems do provide both material and emotional help to parents, but that such support has certain inherent drawbacks. It is not universally available and, in some circumstances, carries negative associations for poor families. Low-income lone mothers in particular enjoy smaller support networks, and are more reliant on mutual support than those in two-parent families. Paradoxically, it is the most socially isolated women who are least willing to seek professional help. Overall, low-income parents' experiences of formal health and social welfare agencies are mixed, and not invariably positive. In conclusion, this paper suggests that formal support services have the potential to fill gaps in informal support systems for poor families, but only if these are provided in ways which are sensitive to their needs. Therefore, parents' perspectives are essential to informing service design, development and evaluation in health and social care.

Public Awareness and Perceptions of Palliative and Comfort Care