Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose : Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods : A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results : Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions : Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

Development of a conceptual model of cancer caregiver health literacy.

Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.

Family carers: ethical and legal issues

This chapter examines the ethical and legal issues related to family caregiving in palliative care. The result suggests that death per se is not an ethical issue, and false perceptions of what the law and ethics require have the capacity to obstruct good care and decision-making at the end of life. The findings also indicate that ethics in palliative care is mainly about good process rather than theory and that effective, appropriate and sensitive work with families is necessary for good palliative care to be delivered.

The role of a care-orientation in the teens in young adult psychosocial wellbeing

Abstract
The transition from adolescence to young adulthood is a watershed period in development that carries risk for poor psychosocial adjustment. It also carries potential for positive transitions into the caregiving roles and responsibilities of adult life. Research to date has predominantly focused on adolescent predictors of problematic rather than positive transitions; yet predictors of the latter hold equal (if not greater) promise for informing health promoting interventions. The purpose of this study was threefold: (1) to use Latent Profile Analysis (LPA) to define patterns of psychosocial adjustment and maladjustment in young adulthood (21-years of age); (2) to examine the unique role of adolescent prosocial behaviour (e.g., volunteering and civic engagement) in promoting adjustment and reducing maladjustment in young adulthood; and, (3) to examine whether protective developmental relationships are maintained after adjustment for other covariates including socio-economic background factors and personality characteristics. Data were drawn from the Victorian cohort of the International Youth Development Study (IYDS; N = 2407), a representative sample of students in Victoria, Australia. Students were assessed in Grade 9 (Mean age = 15-years) and followed up at age 21-years. LPA identified three psychosocial adjustment classes at age 21 defined as: (1) Adjusted (24.8 %); (2) Normative (63.9 %); and, (3) Maladjusted (11.3 %). Adolescent volunteering, belief in a moral order, family opportunities for prosocial behaviour, and commitment to school were associated with enhanced adjustment and reduced maladjustment in young adulthood. Findings highlight the potential benefit of interventions designed to enhance adolescent prosocial behaviours and care orientation in promoting healthy transitions into young adult life.

A representação social do cuidado no programa saúde da família na cidade de Natal

RODRIGUES, M. P.; LIMA, K. C.; RONCALLI, A. G. A representação social do cuidado no programa saúde da família na cidade de Natal. Ciênc. Saúde Coletiva, v. 13, n. 1, p. 71-82. 2008. ISSN 1413-8123.

A representação social do cuidado no programa saúde da família na cidade de Natal

RODRIGUES, Maisa Paulino; LIMA, Kenio Costa de; RONCALLI, Angelo Giuseppe. A representaçao social do cuidado no programa saúde da familia na cidade de Natal. Ciência & Saúde Coletiva, v. 13, n. 1, p. 71-82, 2008.Disponivel em: . Acesso em: 04 out. 2010.

Uma análise sociodemográfica dos cuidadores formais de idosos institucionalizados no município de Natal/RN, 2012

The aging population and individual have been the subject of a multitude of studies nowadays. This is probably due to the impact of this phenomenon in various sectors of society, like social security, social assistance and public health. The process of aging of the individual imply the demand for specific services, considering the limitations and vulnerabilities of the individual at that stage of life cycle. The growth of the elderly contingent in the last decades raises challenges for policymakers, the family and also for the society at large. In this scenario, long-stay institutions for the elderly (LSIEs) appear as an option to aid and support the elderly and their family, assisting in all or part in the activities of daily living and self-care. Inside these LSIEs we find the professional responsible for the direct care of the elderly, the formal caregiver. In this context, this dissertation presents two main objectives: an analysis of the phenomenon of population aging in a given brazilian municipality Natal / RN, based on the Demographic Censuses of 2000 e 2010; and a social, demographic and economic characterization of the Formal caregiver for the institutionalized elderly in the municipality, evaluating aspects of his quality of life and also analyzing the institutions where they are inserted. Furthermore, we intend to identify demographic, socioeconomic and quality of life factors that are correlated with caregivers quitting the job. The data used in the second part of this work comes from the research project named Long-Stay Institutions for Elderly: abandonment or a family need? . This survey interviewed 92 caregivers in eleven LSIEs in Natal/RN. In the data treatment logistic regressions, cluster analysis and statistical tests were used. The survey revealed that aging in Natal is more pronounced in the older, more traditional districts: Petrópolis, Lagoa Seca and Tirol. It also allowed a broad characterization of the formal caregivers in LSIEs. Most of these professionals are female. The educational level is predominantly complete high school and more. Most caregivers reported being married or in union, or have ever been in a union. Family monthly income is under three times the minimum wage. The mean age is of 37.4 years. The mean time of work as a caregiver was 5.93 years. The associations showed that being woman, not being single, having caregiving training and physical limitations (regarding quality of life) are related to wanting to quit the caregiving job. As for the characterization of the LSIEs, it was found that the philanthropic ones are older and have most (62.5%) of the institutionalized elderly. The institutions managers gave social interaction and affinity with the elderly as the main criteria with which to evaluate and hire caregivers. It is intended with this study to contribute to improving the quality of life of the elderly and their caregiver, providing information on aspects of institutionalization of elderly both in the philanthropic and particular institutions, in Natal/RN; this dissertation may also be used as a starting point for later works

Percepção de enfermeiros recém graduados sobre sua autonomia profissional e sobre o processo de tomada de decisão do paciente

O estudo foi realizado junto a enfermeiros recém-graduados que atuam em um hospital público com os objetivos de descrever a percepção destes sobre sua autonomia profissional e sobre o processo de tomada de decisão do paciente. A estratégia adotada para obtenção dos dados foi a de grupo focal e o referencial metodológico a Grounded Theory. Dos resultados emergiram dois fenômenos: 1) Percebendo a fragilidade da autonomia do enfermeiro e do paciente. 2) Movendo-se em direção ao fortalecimento da autonomia do enfermeiro e do paciente. Isto possibilitou a identificação da categoria central: movimento empreendido por enfermeiros recém formados em direção ao fortalecimento de sua autonomia profissional e da autonomia do paciente. A compreensão da experiência nos permitiu ampliar o conhecimento sobre os enfrentamentos dos enfermeiros recém formados, favorecendo nossa atuação como professores de enfermagem.

Estratégias de coping desenvolvidas por cuidadores de idosos portadores de doença crônica

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Programa de apoio a cuidadores: uma ação terapêutica e preventiva na atenção à saúde dos idosos

Dans le cadre du service de gériatrie du Centre de Santé-école de la faculté de médecine de Botucatu (Université de São Paulo), a été établi un programme d'appui à ces soignants avec les objectifs suivants: préserver leur qualité de vie et favoriser de meilleures conditions familiales aux patients. Le programme comprend de 10 à 12 réunions par semaine, de deux heures de durée, coordonnées par deux psychologues. on utilise des techniques de psychodrame centrées sur le rôle du soignant et leurs conséquences sociales et émotionnelles. Les informations théoriques sont transmises au moyen de discussions de groupe et de moyens audiovisuels. Les thèmes suivants sont abordés : signification et motivation du soin donné, signaux d'alertes de fatigue physique et mentale du soignant, les possibilités de se traiter et de demander de l'aide, une méthode d'amélioration de la communication face à une déficience visuelle, auditive et cognitive, une méthode pour favoriser l'indépendance et l'autonomie et surmonter les problèmes relatifs à l'hygiène, la mobilité, l'agression, l'irritation, les hallucinations et les idées délirantes de la personne âgée. Au cours de la première réunion de chaque groupe (qui comprend de 10 à 20 participants) on applique une échelle d'évaluation de l'impact émotionnel sur les soignants (Zarit et al., 1980) et le SRQ (Self Report Questionnaire - Mari and Williams, 1986) qui identifient des désordres psychiatriques. Ces échelles sont reproduites à la fin du programme, pour observer d'éventuelles modifications. Les données obtenues indiquent des changements favorables dans l'expression d'émotions, l'établissement de limites et de retour à des activités de loisirs.

Avaliação da assistência pré-natal e puerperal desenvolvidas em região do interior do Estado de São Paulo em 2005

Objectives: to evaluate the structure and process of the prenatal and puerperal care given by Direção Regional de Saúde (DIR) XI, at the city of Botucatu, State of São Paulo, Brazil. Methods: an evaluation of resources and activities developed during prenatal and puerperal care in twenty municipalities comprising DIR XI which had adhered the Prenatal and Birth Humanization Program until 2003. Interviews with city managers and analysis of 385 sampled patient charts taking into account recommendations by the Health Department. Results: structure analysis showed that caregiving was centered on medical work; basic equipment and instruments were available; 85.2% of patients began prenatal care with up to 120 days of pregnancy, and 75.9% had at least six prenatal consultations. The active search for absentees and strategies for early prenatal care initiation were observed in 30% and 50% of the municipalities, respectively. Process indicators showed that 3.6% of women had six prenatal consultations, one puerperal consultation, all basic exams and tetanus immunization. Recording of gestational age, arterial blood pressure and weight was of approximately 90%; 58.7% of the women underwent childbirth review and 31.5% were vaccinated. Conclusions: the performance of the set of activities is a challenge to prenatal care at DIR XI.

Social Panorama of Latin America 2012

Includes bibliography

Women's contribution to equality in Latin America and the Caribbean

Includes bibliography

Gender, pensions and social citizenship in Latin America

Includes bibliography

Atendimento de urgência/emergência pré-hospitalar a indivíduos com autonomia reduzida vitimados por atos de violência: dificuldades e dilemas éticos

Pós-graduação em Enfermagem (mestrado profissional) - FMB