O processo de adaptação do paciente para realização da diálise peritoneal no domicílio / El proceso de adaptación del paciente para la realización de la diálisis peritoneal en el domicilio / The process of patient adaptation to perform peritoneal dialysis at home

Objetivos: identificar as estratégias de adaptação no domicílio, utilizadas pelos pacientes para início do tratamento da diálise peritoneal; descrever as principais facilidades e dificuldades encontradas pelos pacientes na realização da diálise peritoneal no domicílio; identificar o entendimento e a aceitação do paciente sobre o método de diálise peritoneal. Método: estudo descritivo, com abordagem qualitativa. Os dados foram coletados através de entrevistas semi-estruturadas, organizadas e analisadas conforme a técnica de análise de conteúdo de Bardin. Resultados: da análise das unidades de significação emergiram três categorias temáticas, sendo elas representações da DP; vivências e sentimentos frente à doença e na escolha do método; (re) conhecendo aspectos facilitadores e dificultadores diante a diálise peritoneal em casa; identificando as estratégias para adequação do cotidiano à diálise peritoneal. Conclusão: após o reconhecimento da necessidade da utilização da diálise peritoneal para manutenção da vida, o paciente desenvolve uma série de adaptações para viabilizar o tratamento diário em domicílio.

Objetivos: identificar las estrategias de adaptación en el domicilio, utilizadas por los pacientes para iniciar el tratamiento de la diálisis peritoneal; describir las principales facilidades y dificultades encontradas por los pacientes en la realización de la diálisis peritoneal en el domicilio; identificar la comprensión y aceptación del paciente sobre el método de diálisis peritoneal. Método: estudio descriptivo, con enfoque cualitativo. Los datos fueron recogidos a través de entrevistas semi-estructuradas, organizadas y analizadas conforme a la técnica de análisis de contenido de Bardin. Resultados: del análisis de las unidades de significación emergieron tres categorías temáticas, siendo ellas representaciones de la DP; vivencias y sentimientos frente a la enfermedad y en la elección del método; (re) conociendo aspectos facilitadores y dificultadores ante la diálisis peritoneal en casa; identificando las estrategias para adecuación del cotidiano a la diálisis peritoneal. Conclusión: tras el reconocimiento de la necesidad de la utilización de la diálisis peritoneal para el mantenimiento de la vida, el paciente desarrolla una serie de adaptaciones para viabilizar el tratamiento diario en domicilio.

Objectives: to identify the strategies of adaptation at home, used by patients to begin treatment of peritoneal dialysis; to describe the main facilities and difficulties encountered by patients in performing peritoneal dialysis at home; to identify the patient's understanding and acceptance of the peritoneal dialysis method. Method: descriptive study with qualitative approach. Data were collected through semi-structured interviews, organized and analyzed according to Bardin's content analysis technique. Results: three thematic categories emerged from the analysis of the units of meaning, which were representations of PD; experiences and feelings regarding the disease and the choice of method; (re)knowing aspects that facilitate and hinder peritoneal dialysis at home; strategies for the adaptation of daily life to peritoneal dialysis. Conclusion: after recognizing the need to use peritoneal dialysis for life maintenance, the patient develops a series of adaptations to enable daily treatment at home.

Relación entre competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en niños con tratamiento oncológico en el contexto de la pandemia por COVID-19 / Relationship between competence for home care and the presence of respiratory infections in children with cancer treatment in the context of the COVID-19 pandemic / Relação entre a proficiência para dar os cuidados em casa e a presença de infecções respiratórias em crianças sob tratamento oncológico no contexto da pandemia de COVID-19

Introducción: Los cuidados domiciliarios para los niños con enfermedades neoplásicas, representan costos sociales y económicos, además de posibles riesgos de infección. Por lo que, la importancia del cuidado de los menores ante las infecciones respiratorias virales durante la infancia radica en asegurar las correctas medidas de prevención del contagio. El objetivo de este estudio fue determinar la relación existente entre la competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en los niños con tratamiento oncológico. Método: Estudio de enfoque cuantitativo, diseño correlacional, de corte transversal y descriptivo. La muestra se compone de 75 díadas. La competencia del cuidado domiciliario se midió con el instrumento CUIDAR. El análisis estadístico se realizó con el programa estadístico SPSS versión 25, utilizando estadística descriptiva y estadística inferencial no paramétrica. Resultados: La prevalencia de infecciones respiratorias fue del 4% para los menores con cuidadores con un nivel alto de competencia para el cuidado domiciliario, 12% para el nivel medio y 21.3%para el nivel bajo, mostrando dependencia entre las variables de estudio(X2=14.4, gl= 2, p=0.001). Además, se determinó una asociación (r=-.439, p<.001)entre las mismas. Discusión: La competencia con un nivel alto en los cuidados domiciliarios, supone un adecuado desempeño del rol como cuidador familiar con efecto en calidad de vida de la díada cuidador familiar-persona con cáncer. Conclusiones: A mayor competencia para el cuidado, menor la prevalencia de infecciones respiratorias; existiendo una relación entre la competencia para el cuidado domiciliario y la presencia de infecciones respiratorias en los niños con tratamiento oncológico.

Introduction: Home care for children with neoplastic diseases represents social and economic costs, as well as possible risks of infection. Therefore, the importance of caring for minors in the face of viral respiratory infections during childhood lies in ensuring the correct measures to prevent contagion. The objectiveof this study was to determine the relationship between competence for home care and the presence of respiratory infections in children undergoing cancer treatment. Method: Study of quantitative approach, correlational, cross-sectional and descriptive design. The sample consists of 75 dyads. Home care competence was measured with the CARE instrument. Statistical analysis was performed with the statistical program SPSS version 25.0, using descriptive statistics and non-parametric inferential statistics. Results: The prevalence of respiratory infections was 4% for children with caregivers with a high level of home care competence, 12% for the medium level and 21.3% for the low level, showing dependence between the study variables (X2=14.4, gl= 2, p=0.001). In addition, an association (r=-.439, p<.001) was determined between them. Discussion: The competence with a high level in home care supposes an adequate performance of the role as family caregiver with effect on quality of life of the family caregiver-person with a cancer dyad. Conclusions:The higher the caregiving competence, the lower the prevalence of respiratory infections; there is a relationship between home caregiving competence and the presence of respiratory infections in children undergoing cancer treatment.

Introdução: Os cuidados domiciliares para as crianças com doenças neoplásicas representam custos sociais e econômicos, além dos possíveis riscos de infecção. Por isso, a importância de tomar conta delas no que diz respeito às infecções respiratórias virais durante sua meninice radica em segurar as medidas adequadas para prevenir o contágio. O objetivo deste estúdio foi determinar a relação entre as infecções respiratórias nas crianças sob tratamento contra o cancro e a habilitação para lhes fornecer os cuidados em casa. Método: Estúdio da abordagem quantitativa, desenho correlacional, de corte transversal e descritivo. A amostra se compõe de 75 díades. A habilitação dos cuidados em casa foi medida com o instrumento TOMAR CONTA. A análise estatística se realizou com o programa estatístico SPSS, versão 25. Foi utilizada a estatística descritiva e a estatística inferencial não paramétrica. Resultados: A prevalência de infecções respiratórias foi de 4% para as crianças que receberam os cuidados em casa com um alto nível de efetividade; 12%, quando a efetividade dos cuidados foi intermediária; e para a baixa chegou até 21,3%. Isto demonstra a correlação entre as variáveis de estudo (X2= 14,4; gl= 2; p= 0,001). Além disso, se determinou uma associação (r= -,439; p<,001) entre elas. Discussão:A aptidão adequada para fornecer os cuidados em casa aponta que o responsável pela família desempenhou bem seu papel, o que fez com que houvesse repercussões positivas na qualidade de vida da díade "cuidador familiar-pessoa com câncer". Conclusões: Quanto maior é a proficiência para dar os cuidados, menor é o impacto das infecções respiratórias. Existe uma relação entre a habilitação para os cuidados em casa e a presença de infecções respiratórias nas crianças que recebem tratamentos oncológicos

Doing what it takes: a qualitative study of New Zealand carers' experiences of giving home-based palliative care to loved ones.

AIM: The study explored the views of New Zealand home carers providing home-based palliative care, as little is known about this in the New Zealand context. METHODS: A qualitative interview study involving nine bereaved carers whose loved ones had received a combination of hospice, district health board, home-support and general practitioner care. Inductive thematic analysis was undertaken. RESULTS: Two main themes emerged, both with subthemes: (1) Home-a place of safety and self-determination. (2) Doing what it takes. CONCLUSIONS: The study shows that New Zealand carers' experiences of providing home-based palliative care are similar to those in international studies; country-context, ethnicity and health systems likely influence the differences. While carers are grateful for professionals and family/whanau/friend support, they experience challenges that could be addressed by the following recommendations: undertake a regular review with carers regarding the decision to provide care at home; support carers to take on a leadership role if this is what they want; ensure carers have information regarding which professional and which agency does what and who to contact for help; provide post-bereavement support to carers for longer than it is currently being given.

The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study.

PURPOSE: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients' discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. METHODS: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. RESULTS: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present ('being there') which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. CONCLUSIONS: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones' wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.

Development of a home-visit nursing scale for helping spousal caregivers of terminal cancer patients develop positive perspectives of their caregiving experiences: a cross-sectional study.

OBJECTIVE: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role. DESIGN: Cross-sectional questionnaire study. SETTING: The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews. PARTICIPANTS: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation. MAIN OUTCOME MEASURE: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach's α was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity. RESULTS: Exploratory and confirmatory factor analyses identified 26 items on five factors: 'helping spouses plan their futures' 'helping caregivers alleviate any regrets regarding their care', 'understanding the bond between a couple', 'providing support for anticipatory grief', and 'addressing spousal caregivers' emotions after their spouses' deaths'. The final model showed acceptable goodness-of-fit indices. The Cronbach's α for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively. CONCLUSIONS: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.

Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs.

BACKGROUND: Early diagnosis of complex congenital heart disease and advances in surgical interventions have resulted in remarkable improvements in prognoses and hospital survival. Although studies have provided insight into children's experiences with complex congenital heart disease after hospitalization, few have addressed parents' experiences providing care for infants with complex congenital heart disease who are discharged home with complex care needs after surgical palliation. OBJECTIVES: To describe the perceptions and lived experiences of mothers of infants who were discharged from the hospital after surgery for complex congenital heart disease but were then readmitted to the hospital. METHODS: Data collection and analysis for this pilot study were guided by grounded theory. From February through October 2017, interviews were conducted with 10 mothers about their experiences caring for their infants at home after surgery for complex congenital heart disease. RESULTS: Analyses led to development of 1 category, "having to be the one," which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death. CONCLUSIONS: The category of "having to be the one" highlighted mothers' experiences providing medicalized care at home to their infants after complex cardiac surgery while managing other responsibilities, such as employment, busy households, and parenting other school-age children. The role of the caregiver is vital but demanding. Mothers' caregiving at home may be enhanced by nursing interventions such as routine screening for infant distress plus assessment for alterations in family coping or relational challenges that threaten family function.

[Choosing, Challenging, Stabilizing, and Fulfilling: The Experiences of Palliative Care at Home as Perceived by Family Caregivers].

BACKGROUND: Although the Taiwan government has subsidized the provision of palliative care at home since 2000, the utilization rate of this service has been low. PURPOSE: The purpose of this research is to explore the experiences of palliative care at home as perceived by family caregivers. METHODS: This qualitative study used semi-structured interviews to collect the data. Six family caregivers who had been providing home-based palliative care services for at least 2 weeks were invited to participate. RESULTS: Four themes related to the care experiences of the participants emerged: (1) Choosing palliative care at home for the end-of-life journey: Considering the wishes of patients and the capacities of caregivers, with hospitals providing powerful support to caregivers; (2) Facing the burdens of providing palliative care in a home setting: Determining the caring skills while feeling fear and stress, and needing to resolve this stress and achieve a respite; (3) Pursuing stable home palliative care: Relying on consultations with the professional palliative care team for information, support, and insights regarding the value of home palliative care; and (4) Fulfilling the promise of a good death at home: Preparing the patient to say goodbye and to experience a peaceful death and family members to express their sadness and adapt to a new life. CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Home palliative care services help provide patients and their families convenience, intimate care, and reassurance at home. However, all caregivers must be properly trained in caring skills and the skills necessary to sustain their long-term care responsibilities. Home palliative care services have been described as the internal and external needs that patients and families require to maintain a stable quality of life and as the comfort required by the bereaved family members. The findings of this study demonstrate the value of home palliative care and of promoting home palliative care at the end of life.

Contenção mecânica de idosos na atenção domiciliar: revisão de literatura / Mechanical restriction of older adults in domiciliary attention: literature review

Objetivos: Identificar na literatura publicações que abordem o uso de contenção mecânica na atenção domiciliar. Métodos: Revisão integrativa da literatura realizadas nas bases de dados MEDLINE, LILACS, CINAHL e SCOPUS, no período de 2008 a 2018. Resultados: As prevalências de contenção física variavam entre 20% a 40%, a alta variação ser refere as distintas metodologias e legislações vigentes quanto à pratica de contenção física. A grade lateral é a contenção mais comum e as razões mais citadas para conter foram segurança do paciente, para evitar quedas e pedido dos familiares. Identificou- -se que 16,7% dos profissionais afirmaram ter aconselhado aos cuidadores o uso de restrições e, que 93% destes não souberam identificar alternativas para esta prática. Conclusão: Recomenda-se orientações específicas ao cuidado domiciliar centradas nas famílias, evitando a transposição inadequada do meio hospitalar para o âmbito domiciliar, e disseminar intervenções alternativas à contenção. (AU)

Objectives: To identify in the literature publications that address the use of mechanical restriction in home care. Methods: Integrative literature review carried out in the MEDLINE, LILACS, CINAHL and SCOPUS data bases from 2008 to 2018. Results: The prevalence of physical restraint ranged from 20% to 40%, the high variability refers to the different methodologies and legislation regarding the practice of physical restraint. The lateral grid is the most common containment and the most cited reasons to contain were patients afety, to avoid falls and family members' request. It was identified that 16.7% of the professionals stated that they advised caregivers to use restrictions, and that 93% of them did not know how to identify alternatives for this practice. Conclusion: Specific guidelines for household-centered care are recommended, avoiding the inadequate transposition of the hospital environment into the home, and disseminating alternative interventions to containment. (AU)

The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care.

AIMS: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care. BACKGROUND: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative. DESIGN: A pre-experimental design with a one-group pre-test/posttests measurements. METHODS: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About 1 week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study. RESULTS: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and at (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3). CONCLUSION: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care. IMPACT: There is a lack of knowledge about the benefit of therapeutic conversation interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress, and decreased caregiving demands among caregivers in palliative home-care. TRIAL REGISTRATION NUMBER: ISRCTN 21786830.

Family Caregivers' Involvement in Caring with Cancer and their Quality of Life.

Background: Cancer is a chronic disease and a major health problem. It affects both patients and their family caregivers multidimensionally. The family caregivers may be affected by not only the disease process but also hospital policies, economic difficulties, accessibility and communication of health care service and can be in need of help. This process may affect their quality of life. However, there have not been enough studies on quality of life of family caregivers of patients with cancer in Turkish culture. Therefore, this study aimed to evaluate the quality of life of family caregivers of patients with cancer in Turkey. Objectives: The purpose of study was to evaluate the quality of life of family caregivers with cancer patients in Turkey. Methods: Participants consist of the family caregivers who volunteered to take part in this descriptive study from 11 hospitals (n =378) which has a daily chemotherapy units and located within the boundaries of Ankara, Turkey. 'Sociodemographic Characteristic Form' and 'Quality of Life Scale-Family Version were used as data collection tool. The Kruskal-Wallis and Mann-Whitney U, tests were used for data analysis. Resultes:It is found that there are statistically significant difference among the factors of gender, employment status, income level, and whether caregivers reside with their patients. Family caregivers' quality of life is negatively affected during the caregiving process (p < 0.05). Conclusion: The results indicate that family caregivers' quality of life are negatively affected to care process. The results of this research are important as they highlight the need to also consider family caregivers' quality of life when caring for patients, and study highlight possible areas in which support can be provided for family caregivers of cancer patients in Turkey.

Representações sociais de familiares de pacientes pediátricos fora de possibilidades terapêuticas atuais / Social representations of pediatric patients' relatives without current therapeutic treatment / Representaciones sociales de familiares de pacientes pediátricos fuera de posibilidades terapéuticas actuales

Objective: The study's goal has been to describe the understanding of caregivers with regards to pediatric clients without current therapeutic treatment to cancer and its repercussion for home care. Methods: It is a descriptive research with a qualitative approach that used the Social Representation Theory. Results: The data of this research were obtained through data collection: the free association of ideas, where the following units appeared: Palliative care ­ the caregiver facing the care; The essence of caring when dealing with limit situations; The oncological child - the need for careful attention; and, Caring for the child at home: a caring family. Conclusion: It was observed that the relatives of a child need a follow-up from the healthcare professionals. At the household care, the nurse can offer the necessary information about the main health care at this stage of life; furthermore, they can offer emotional support and also help minimizing doubts about the treatment established

Objetivo: Descrever a compreensão de cuidadores de clientes pediátricos FPTA sobre o câncer e sua repercussão para o cuidado em domicílio. Método: pesquisa foi descritiva, com o emprego de uma abordagem qualitativa empregando a teoria das representações sociais. Resultados: Os dados desta pesquisa foram obtidos por meio da utilização de uma técnica de coleta: a livre associação de ideias, emergindo as unidades: cuidados paliativos: cuidador diante do cuidar. a essência do cuidar nas situações limites, A criança oncológica - a necessidade de um cuidar atencioso e o cuidar em casa ­ um cuidar familiar. Conclusão: Observou-se que os familiares de uma criança necessitam de um acompanhamento da equipe de saúde. a nível domiciliar, mais precisamente do enfermeiro para oferecer as informações necessárias sobre os principais cuidados de saúde nessa fase da vida, para oferecer o suporte emocional e minimizar as dúvidas sobre o tratamento instituído

Objetivo: Describir la comprensión de los cuidadores de los clientes pediátricos de FPTA sobre el cáncer y su repercusión para el cuidado a domicilio. Método: investigación fue descriptiva, con el empleo de un abordaje cualitativo empleando la teoría de las representaciones sociales. Resultados: Los datos de esta investigación fueron obtenidos por medio de la utilización de una técnica de recolección: la libre asociación de ideas, emergiendo las unidades: cuidado paliativo: cuidador ante el cuidar. La esencia del cuidar en las situaciones límites, El niño oncológico - la necesidad de un cuidado atento y el cuidar en casa - un cuidado familiar. Conclusión: Se observó que los familiares de un niño necesitan un seguimiento del equipo de salud. A nivel domiciliar, más precisamente del enfermero para ofrecer las informaciones necesarias sobre los principales cuidados de salud en esta fase de la vida, para ofrecer el soporte emocional y minimizar las dudas sobre el tratamiento instituido

Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers. METHODS: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers. RESULTS: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE. CONCLUSION: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents. IMPLICATIONS FOR PRACTICE: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.

Identifying and assessing the needs of carers of patients with palliative care needs: an exploratory study.

BACKGROUND:: Carers of patients with palliative care needs require careful assessment and support to undertake their role effectively. The carer component of palliative care is embedded in complex situations that necessarily focus on the patient. AIMS:: To explore experiences of specialist palliative care nurses in identifying, assessing and planning care to support those looking after patients with palliative care needs. RESULTS:: Findings identified gaps in identifying carers and their role, and in assessing carers' needs. CONCLUSIONS:: This study confirmed the complexity in assessing carers' needs within the palliative care context, that practice gaps exist and positive outcomes result when routine processes were adopted. Future research should explore how to systematically make improvements in supporting carers in all palliative care contexts, including specialist and non-specialist settings.

Factors Influencing Cancer Patients' Choice of End-of-Life Care Place.

BACKGROUND: It is important for cancer patients to receive end-of-life care at the desired place. OBJECTIVE: To identify issues in selection of place for end-of-life care of cancer patients to realize their optimal survivorship. DESIGN AND SETTING: Between September 2015 and January 2016, a questionnaire consisting of 33 items, including end-of-life care place preferences, was administered to cancer patients who attended three university hospitals in Japan. RESULTS: A total of 971 questionnaires were collected (response rate, 88.4%). Fifty-eight percent of patients preferred to stay at home to receive end-of-life care. In contrast, more than 80% of patients did not know the details of healthcare services. The factors significantly associated with patients' choice for place of end-of-life care at home were "male gender" (odds ratio [OR] = 1.43, p = 0.030), "living in a one-person household" (OR = 0.21, p < 0.001), "feeling close to friends" (OR = 0.94, p = 0.049), "thinking that the family is burdened" (OR = 0.55, p < 0.001), "thinking that pain is controllable at home" (OR = 1.39, p < 0.001), and "thinking that society should establish a system of home palliative care" (OR = 1.93, p < 0.001). CONCLUSIONS: This study identified six factors influencing the selection of a place for end-of-life care. Most patients have a desire for a social system that allows end-of-life care at home where they can live with their family, but have anxiety about treatment to deal with symptom change, with concern about burden on their family. These issues should be addressed in the future.

Evaluation of quality of life in caregivers who are providing home care to cancer patients.

PURPOSE: The author aimed to evaluate the quality of life and the factors affecting the caregivers of cancer patients receiving home care. METHODS: This cross-sectional descriptive study was performed in 48 cancer patients who were served from home care unit and 48 caregivers between 01 and 28 February 2014. Patients' functional status was evaluated with Katz Index for Activities of Daily Living and the Lawton Scale for Instrumental Activities of Daily Living. The levels of quality of life of caregivers of patients with cancer were determined with Caregiver Quality of Life Index-Cancer (CQOLC). RESULTS: The mean age of forty-eight patients was 69.79 ± 16.09 years; 62.5% of them were female. The mean duration of home care was 5.99 ± 5.26 years; 25% of patients were fully dependent on the bed. 83.3% of caregivers were female, mean age of caregivers was 50.75 ± 14.89 years, and 77.1% of them were family members. The mean CQOLC score was 74.43 ± 24.45. The highest score was detected in the financial distress and the lowest score was detected in the positive adaptation. The quality of life is increasing as the length of care is reduced and income status increased. CONCLUSION: The quality of life of caregivers is very low. Each characteristic of the caregiver will affect the care he/she gives. From this point of view, it is important to consider the characteristics of caregivers in improving the care given to cancer patients. In this respect, there is a need to support caregivers both materially and spiritually.

Caring for patients with brain tumors compared to patients with non-brain tumors: Experiences and needs of informal caregivers in home care settings.

BACKGROUND/OBJECTIVE: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients. METHODS: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively. Data was analyzed using principles of thematic analysis method. RESULTS: The results support existing evidence that the themes assessment of the situation, dealing with the situation, effects of the situation, and support by others are of importance to all informal caregivers. Caregivers in the brain tumor group put more emphasis on information and perception of the situation by others than caregivers in the non-brain tumor group. CONCLUSION: The emerging need for information of caregivers and the effects for caregivers of changes in the perception of the situation by others should be addressed to better support informal caregivers of brain tumor patients.

On being a caregiver: The experiences of South African family caregivers caring for cancer patients.

The purpose of our study was to describe the experiences of family caregivers of cancer patients using the public healthcare system in South Africa. We used a qualitative descriptive design and conducted in-depth interviews with 20 purposively selected family caregivers. Data saturation determined the sample size, and qualitative content analysis was used to analyse the data. Three themes arose from the data: emotional responses and feelings towards the cancer diagnosis, fulfilling the role of the caregiver and living and coping with a changed life and a changed person. Caring for a person with cancer was not easy. Participants were overwhelmed with the care responsibilities, which were aggravated by poverty. Some felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. The lives the participants knew changed and they had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person. For some, the sick person they cared for changed and became a person they did not know. Most participants used religious practices to cope with their situation; however, some used other coping mechanisms, such as recreation and even smoking.

Cuidadores de idosos e tensão excessiva associada ao cuidado: evidências do Estudo SABE / Caregivers of elderly and excessive tension associated to care: evidence of the Sabe Study

RESUMO: Introdução: A presença de múltiplas doenças e agravos crônicos pode ocasionar a incapacidade funcional do idoso, o qual poderá requerer a necessidade de ajuda de outra pessoa. A prestação de cuidados diários e ininterruptos pode gerar no cuidador situações estressoras, levando-o a sobrecarga. Objetivo: Descrever o perfil sociodemográfico e assistencial dos cuidadores de idosos e analisar os fatores associados à tensão excessiva associada ao cuidado. Métodos: Trata-se de um estudo transversal, parte do Estudo Saúde, Bem-Estar e Envelhecimento (SABE), realizado no município de São Paulo, no ano de 2010, com 362 cuidadores. A tensão excessiva associada ao cuidado foi avaliada pela escala de Zarit, e considerou-se ausência de sobrecarga pontuação inferior a 24 pontos e presença de sobrecarga os escores ≥ 24 pontos. Utilizou-se regressão de logística hierárquica para analisar os fatores associados à tensão dos cuidadores familiares. Resultados: A maioria dos cuidadores era familiar (91,5%), do sexo feminino (75,4%), com média de idade de 53,9 anos (desvio padrão - DP ± 15,5), casado (65,3%), residente no mesmo domicílio do idoso (68,2%). Um terço deles apresentou sobrecarga de cuidado, que foi associado à idade (odds ratio - OR = 1,04; p = 0,001), ao relato de disfunção familiar (OR = 5,60; p = 0,000) e à prestação de cuidado contínuo (OR = 2,78; p = 0,030). Conclusão: Os dados revelam a necessidade de políticas públicas que incluam as necessidades e o suporte aos cuidadores, em especial, os familiares, a fim de melhorar sua qualidade de vida e a sua prestação de cuidados às pessoas idosas.

ABSTRACT: Introduction: Multiple illness and injury classes can cause a functional disability of the elderly, or the right to seek help from another person. Caregiving can be generated without the caregiver functions, leading to burden. Objective: to describe the sociodemographic and care profile of caregivers of the elderly and to analyze the factors associated with excessive stress regarding care. Method: This is a cross-sectional study, part of the SABE (Health, well-being and aging) Study, carried out in the city of São Paulo in 2010, with 362 caregivers. The excessive stress associated with care was evaluated by the Zarit Scale, and the load was found to be less than 24 points and the presence of burden was considered, with scores ≥ 24 points. Hierarchical Logistic Regression was used to analyze the factors associated with the stress of family caregivers. Results: Most of the caregivers were family members (91.5%), being female (75.4%), mean age 53.9 years (SD ± 15.5), married (65.3%), lived in the same household with the elderly (68.2%). One-third of them presented burden, which was associated with age (OR = 1.04, p = 0.001), family dysfunction (OR = 5.60, p = 0.000), continuous care (OR = 78, p = 0.030). Conclusions: The data reveal the need to maintain their needs and support to caregivers, especially their relatives and their sources of life and their debts.

O cuidado do idoso dependente no contexto familiar / Cuidado de ancianos dependiente del contexto familia / The care of dependent elderly on the family context

Objetivo: compreender como ocorre a organização de famílias cuidadoras de idosos dependentes no contexto familiar. Método: Qualitativo, com cinco participantes e coleta de dados em duas etapas. A primeira com o propósito de identificar idade, sexo, grau de instrução, estado marital e renda; a segunda com foco na organização familiar. O método de análise utilizado foi o discurso do sujeito coletivo (DSC), CAAE: 33714314.4.0000.5564. Resultados: Os discursos revelaram necessidade de as famílias adaptarem-se às rotinas impostas pela presença do idoso e cuidador principal como membro da família que mais altera seus hábitos, e sofre privação da liberdade. Conclusão: Famílias e cuidadores necessitam da vigilância, atenção à saúde e suporte contínuo das equipes que atuam nos programas da Estratégia de Saúde da Família (ESF).

Objective: to understand how does the organization of caregiving families of elderly dependent occur in the family context. Method: Qualitative, with 5 participants and data collection in two stages. The first was in order to identify age, gender, education level, marital status and income; the second was focusing on family organization. The analysis method used was the Collective Subject Discourse, CAAE: 33714314.4.0000.5564. Results: The discourses revealed the need for families to adapt to the routines imposed by the elderly presence and primary caregiver as a family member that changes their habits, and suffer deprivation of liberty. Conclusion: Families and caregivers need surveillance, health care and ongoing support teams that work in the family health strategy programs.

Objetivo: para entender cómo funciona la organización de las famílias de cuidado Depend-dientes de edad avanzada en el contexto familiar. Método: Cualitativa, com 5 participantes y la recogida de datos en dos etapas. El primer fin de identificar la edad, sexo, nivel de educación, estado civil y los ingresos, y la segunda se centra en la organización familiar. El método de análisis utilizado fue el Discurso del Sujeto Colectivo, CAAE: 33714314.4.0000.5564. Resultados: Los discursos necesidad de lãs familias reveladas a adaptarse a las rutinas impuestas por la antigua presencia y cuidador principal como um miembro de la familia que más cambie sus hábitos, y sufren privación de libertad. Conclusión: Las famílias y los cuidadores necesitan vigilancia, atención médica y equipos de apoyo en curso que trabajan en los programas de la estrategia de salud de la familia.