O que dizem familiares de autistas sobre o trabalho desenvolvido pelos CAPSi? / What do family members of autistic people say of the work carried out by the CAPSi?

Resumo A política de saúde mental infantojuvenil, implantada no Brasil no início do século XXI, estabeleceu os Centros de Atenção Psicossocial Infantojuvenis (CAPSi) como equipamentos estratégicos para priorizar os casos de maior complexidade, com destaque para os autistas. Este estudo visa cotejar duas fontes de informação sobre a percepção de familiares de autistas acerca do trabalho desenvolvido pelos CAPSi: a primeira foi colhida em pesquisa de 2011, que utilizou grupos focais; e a segunda, a partir da literatura produzida sobre o tema nos 10 anos seguintes. As narrativas foram organizadas em quatro eixos temáticos: percepção sobre os efeitos do trabalho psicossocial; compartilhamento de informações; percepção sobre os processos de cuidado; e demandas e reivindicações. A despeito da heterogeneidade entre os estudos, os resultados indicaram que o trabalho dos CAPSi produz efeitos positivos, principalmente em relação à socialização. Contudo, essa percepção não é acompanhada de melhor entendimento do quadro clínico e dos processos de cuidado. O valor do tratamento é frequentemente atribuído à atitude pessoal dos profissionais, indicando a ausência de compartilhamento e participação dos familiares. Esses aspectos devem instigar os CAPSi a envolver os familiares como parceiros do cuidado, dando atenção especial à transmissão da lógica psicossocial, suas estratégias e direção do cuidado.

Abstract The child and adolescent mental health policy, implemented in Brazil from the beginning of the 21st century, established the Centros de Atenção Psicossocial Infantojuvenis (CAPSi - Psychosocial Care Centers for Children and Adolescent) as strategic services to prioritize more complex cases, with emphasis on autism. This study aims to compare two sources of information on the perception family members of autistic people regarding the work carried out by CAPSi: the first was collected in a 2011 survey, which used focus groups; and the second, from the literature produced on the subject in the following 10 years. The family member's narratives were organized into four thematic axes: perception of the effects of psychosocial care; information sharing; perception about care processes; and demands and claims. Despite the heterogeneity between the studies, the results indicated that the work of the CAPSi produces positive effects, especially regarding socialization. However, this perception is not accompanied by a better understanding of the clinical picture and care processes. The value of treatment is often attributed to the personal attitude of professionals, indicating the lack of sharing and participation by family members. These aspects should encourage the CAPSi to involve family members as partners in care, particularly valuing the transmission of the psychosocial reasoning, its strategies and direction of care.

Efectividad de un programa de automanejo para cuidadores familiares / Effectiveness of a self-management program for family caregivers

INTRODUCCIÓN: La carga de cuidado en los cuidadores familiares (CF), tiene un efecto en la salud física y mental, relaciones familiares, laborales y estado financiero, aumentando la necesidad de intervenciones efectivas para mejorar el automanejo de su condición y el cuidado al familiar en el hogar. OBJETIVO: evaluar la efectividad de un programa para promover el automanejo en CF. METODOLOGÍA: de diseño cuasi experimental con mediciones pre y post intervención, en una muestra no probabilística, intencionada de 19 CF de personas mayores con nivel de dependencia. El programa "Trabajando juntos en colaboración" (TJC), implementado por facilitadores entrenados y certificados, promueve el automanejo y habilidades para cuidar a su familiar en casa. Para evaluar el efecto de la intervención se aplicó pre y post-test el Instrumento de "Automanejo en Cuidadores Familiares", la prueba Shapiro-Wilks, el análisis de diferencias por la t-Student y test de Wilcoxon, se calculó el tamaño del efecto y la potencia estadística (1- ß). RESULTADOS: se encontró una diferencia estadísticamente significativa entre el pre y post intervención, observando un incremento en el resultado de la sumatoria global y en las tres dimensiones del automanejo. Estas diferencias muestran un efecto relevante a considerar (>,80) y una potencia alta (>,80). CONCLUSIÓN: El Programa TJC, muestra efectividad en mejorar el automanejo en CF, con una potencia adecuada que podría permitir generalizar resultados en poblaciones similares. Siendo este un programa genérico, podría ser aplicado en cualquier caso de CF, independiente a la enfermedad o condición de su familiar.

INTRODUCTION: The caregiving burden on family caregivers (FC) has an impact on physical and mental health, family relationships, work, and financial status, increasing the need for effective interventions to improve self-management of their condition and care for the family member at home. OBJECTIVE: to evaluate the effectiveness of a program to promote self-management in FC. METHODOLOGY: The study employed a quasi-experimental design with pre- and post-intervention measurements in a non-probabilistic, purposive sample of 19 FC of older individuals with a level of dependency. The "Trabajando Juntos en Colaboración" (TJC) program, implemented by trained and certified facilitators, promotes self-management and skills to care for their family member at home. To assess the intervention's effect, pre and post-tests were administered using the "Automanejo en Cuidadores Familiares" instrument, along with the Shapiro-Wilks test, t-Student analysis of differences, and Wilcoxon test. Effect size and statistical power (1- ß) were calculated. RESULTS: indicated statistically significant differences between the pre- and post-intervention periods, with an observed increase in the overall sum and in all three dimensions of self-management. These differences demonstrate a relevant effect (>0.80) and high statistical power (>0.80). CONCLUSION: the TJC program proves effective in enhancing self-management in CF, with sufficient power to potentially generalize results to similar populations. As a generic program, it could be applied in any FC case, regardless of the disease or condition of their family member.

Lecciones aprendidas en Apropiación Social del Conocimiento en cuidadores familiares de personas con enfermedad crónica / Lessons learned in Social Knowledge Appropriation in family caregivers of people with chronic diseases

INTRODUCCIÓN: Los cuidadores familiares de personas con enfermedad crónica se ven enfrentados a cambios de orden individual, familiar y social, lo que afecta su calidad de vida y son expuestos a prácticas saludables y no saludables. OBJETIVO: Transferir el conocimiento generado en la línea de adopción de rol del cuidador de la persona con enfermedad crónica. METODOLOGÍA: Estrategia de Apropiación Social del Conocimiento (ASC) con enfoque de investigación participativa basada en la comunidad. Se contemplaron las siguientes fases: revisión y actualización de literatura científica, identificación de actores, diagnóstico situacional; planeación y desarrollo de la estrategia, y seguimiento. En Bogotá y Cajicá (Colombia), con cuidadores familiares de personas con condiciones crónicas. RESULTADOS: Se confirma la necesidad de dinamizar las redes a través de estrategias de ASC. Se realizaron grupos focales en donde se priorizaron 21 temáticas que fueron abordadas conjuntamente entre los cuidadores y los Jóvenes Talento. Aplicación del pre y postest del instrumento Rol en donde se evidenció un aumento en la adopción del rol. CONCLUSIONES: Se evidenció una constante retroalimentación bidireccional entre los Jóvenes Talento y los cuidadores participantes; contribuyendo a la generación de conocimiento teniendo como fundamentos la evidencia científica.

INTRODUCTION: Family caregivers of people with chronic diseases are faced with individual, family, and social changes that affect their quality of life and are exposed to healthy and unhealthy practices. OBJECTIVE. Transfer the knowledge gained in the process of adopting the role of the chronic illness patient's caregiver. METHODS: Social Knowledge Appropriation (SKA) strategy incorporating a community-based participatory research methodology. Consideration was given to the following phases: review and update of scientific literature, identification of actors, situational analysis, planning and development of the strategy, and follow-up. In Bogotá and Cajicá, with family caregivers of chronically ill patients. RESULTS confirm the need to energize networks with SKA strategies. Twenty-one topics were prioritized and discussed by caregivers and young talent in focus groups. Application of the pre- and post-test of the role instrument, which revealed an increase in role adoption. CONCLUSIONS: A constant bidirectional feedback was observed between the young talents and the participating caregivers, which contributed to the generation of scientifically based knowledge.

Place et vécu psychosocial des proches de schizophrènes suivis au service d'addictologie et d'hygiène mentale d'Abidjan (SAHM) / Psychosocial place and experience of relatives of schizophrenics followed at the addiction and mental hygiene service of Abidjan (SAHM)

La survenue de la schizophrénie chez un membre de la famille n'affecte pas que le malade, elle a une répercussion sur l'ensemble de la sphère familiale. À la vue de cette réalité, nous avons mené une étude transversale à visée descriptive ayant portée sur un échantillon sur 132 proches de patients schizophrènes à Abidjan. Les résultats de cette étude ont montré que : - Dans la majorité des cas (87,13%), les aidants familiaux des patients schizophrènes étaient des membres de la famille nucléaire. Ces aidants familiaux qui assuraient l'essentiel de la prise en charge, exerçaient pour plus de la moitié (57,58%) d'entre eux dans le secteur informel, avaient à 72.22% un revenu mensuel inférieur à 100.000 F.CFA (152,7 euro). Tous nos participants à l'enquête ont affirmé ne recevoir aucune aide extérieure ; - En termes de degré d'implication des proches il ressort que les parents géniteurs et la fratrie étaient les plus impliqués à 78,29%dans frais des médicaments, à 73,49% dans le suivi de l'observance thérapeutique et à 61,36% dans l'apport d'assistance dans les besoins quotidiens de leur proche atteint de schizophrénie ; - Parmi les difficultés rencontrées par les proches dans la prise en charge des schizophrènes, celles qui ont les fréquences les plus élevées sont celles de la stigmatisation (77,78%), l'épuisement financier (73,33%), la fragilité de la santé (62,22%), des difficultés liées à la couchette et à l'alimentation (53,33%) et du manque de temps pour soi-même (46,67%) ; - Les principales réactions psychologiques enregistrées à l'annonce du diagnostic de schizophrénie chez nos enquêtés étaient : tristesse (88,89%) ; découragement (86,67%) et stress (77,78%). Il a été cependant noté qu'au décours du suivi des patients, les principales attitudes enregistrées chez nos participants face à cette situation étaient : renforcement de l'affection (52,67%) et le soutien moral (35,11%).

The occurrence of schizophrenia in a family member does not only affect the patient, it has an impact on the entire family sphere. In view of this reality, we conducted a descriptive cross-sectional study involving a sample of 132 relatives of schizophrenic patients in Abidjan. The results of this study showed that: -In the majority of cases (87.13%), family caregivers of schizophrenic patients were members of the nuclear family. These family carers who provided most of the care, worked for more than half (57.58%) of them in the informal sector, had at 72.22% a monthly income of less than 100,000 CFA francs (152,7 euro). All of our survey participants said they receive no outside help; - In terms of degree of involvement of relatives, it appears that parents and siblings were the most involved at 78.29% in drug costs, at 73.49% in monitoring therapeutic compliance and at 61, 36% in providing assistance with the daily needs of their loved one with schizophrenia. - Among the difficulties encountered by relatives in the care of schizophrenics, those with the highest frequencies are those of stigmatization (77.78%), financial exhaustion (73.33%), the fragility of health (62.22%), difficulties related to bed and food (53.33%) and lack of time for oneself (46.67%). - The main psychological reactions recorded at the announcement of the diagnosis of schizophrenia among our respondents were: sadness (88.89%); discouragement (86.67%) and stress (77.78%). It was however noted that during the follow-up of the patients, the main attitudes recorded by our participants in the face of this situation were: reinforcement of affection (52.67%) and moral support (35.11%)

Síndrome congênita do zika e impactos para as famílias: uma revisão integrativa / Congenital zika syndrome and family impacts: an integrative review

Resumo Em 2015, um espectro de anomalias congênitas, incluindo microcefalia, acometeu recém-nascidos como resultado da transmissão vertical pelo vírus zika, posteriormente denominada síndrome congênita do zika (SCZ). Desde então, cerca de 4 mil crianças foram afetadas em 27 países, sendo o Brasil o mais atingido. Cuidadores familiares também têm sido impactados. Esse estudo analisa publicações científicas que investigam as maneiras como a doença afetou as dinâmicas de vida de cuidadores familiares de crianças com SCZ. Realizou-se uma revisão integrativa de literatura consultando as bases de dados PubMed, Biblioteca Virtual em Saúde e Embase. Após as etapas de triagem, foram identificados 31 artigos. Os principais resultados foram agrupados em quatro categorias: a) impactos sociais que evidenciaram mudanças nas relações familiares, nos projetos de vida e no convívio social; b) impactos subjetivos - sentimentos de resiliência, solidão, luto, sobrecarga, medo, incerteza e relação com a espiritualidade; c) impactos econômicos e materiais - perda de renda, aumento de despesas, mudança de moradia e desemprego e d) impactos na saúde - despreparo dos serviços, renúncia do cuidado de si, modificações dos padrões nutricionais e de sono, repercussão para a saúde mental e níveis de estresse, ansiedade e depressão.

Abstract In 2015, a range of congenital anomalies resulting from mother-to-child transmission of the zika virus emerged. Later called congenital zika syndrome (CZS), the condition includes microcephaly. Since then, around 4,000 children have been affected in 27 countries, with Brazil accounting for the largest proportion of cases. Family caregivers have also been affected. This study analyzes the literature on caregivers of children with CZS and how the disease has affected their everyday lives. We conducted an integrative review using the PubMed, Virtual Health Library, and Embase databases. Thirty-one articles were identified for analysis after screening. The findings were grouped into four categories: a) social impacts - changes in family relationships, life projects, and social life; b) subjective impacts - feelings of resilience, loneliness, grief, overburdening, fear, uncertainty, and spirituality and religion; c) economic and material impacts - loss of income, increased household expenses, change of residence, and unemployment; and d) health impacts - service unpreparedness, selflessness, self-care, changes in nutritional and sleep patterns, and mental health problems, including stress, anxiety and depression.

Caracterización psicosocial del cuidador familiar del paciente con padecimientos oncológicos

Fundamento: dentro de las problemáticas que afrontan los cuidadores familiares de pacientes con padecimientos oncológicos está el hecho, que estos asumen el cuidado de sus familiares sin los conocimientos específicos, ni las habilidades requeridas para el ejercicio del cuidado, lo que genera una sobrecarga en ellos. Objetivo: identificar las principales características psicosociales del cuidador familiar del paciente con padecimientos oncológicos en la zona urbana de Niquero, durante el período de noviembre de 2019 a marzo del 2022. Métodos: se realizó un estudio descriptivo en el período comprendido de noviembre 2019 a marzo 2022 en el municipio Niquero en la provincia Granma. El universo de estudio quedó conformado por 305 cuidadores familiares de pacientes con padecimientos oncológicos, escogiéndose una muestra de 255 de ellos por medio de los criterios establecidos. Las variables analizadas fueron: edad, sexo, nivel de escolaridad, factores psicosociales presentes. Se realizó un muestreo intencional y probabilístico. Resultados: prevaleció el grupo de 50-59 años, el sexo femenino y como nivel de escolaridad, predominó el de secundaria básica, el miedo fue el estado emocional más referido por ellos. En los antecedentes sociales la situación económica desfavorable fue la que prevaleció, así como el nivel de afrontamiento familiar inadecuado ante el rol de cuidador. Conclusión: el miedo, la situación económica desfavorable y el nivel de afrontamiento inadecuado ante el rol de cuidador, fueron las principales características psicosociales que predominaron.

Background: among the problems faced by family caregivers of patients with oncological diseases is the fact that they take care of their relatives without the specific knowledge or skills required for the exercise of care, which generates an overload in them. Objective: to identify the main psychosocial characteristics of the family caregiver of the patient with oncological conditions in the urban area of ​​Niquero, during the period from November 2019 to March 2022. Methods: a descriptive study was carried out in the period from November 2019 to March 2022 in the Niquero municipality in the Granma province. The universe of study was made up of 305 family caregivers of patients with oncological conditions, choosing a sample of 255 of them by means of the established criteria. The variables analyzed were: age, sex, level of education, psychosocial factors present. An intentional and probabilistic sampling was carried out. Results: the age group prevailed in the family caregivers of cancer patients aged 50-59 years, the female sex and as level of education, the basic secondary predominated, fear was the emotional state most referred to by them. In the social background, the unfavorable economic situation was the one that prevailed, as well as the level of inadequate family coping with the role of caregiver. Conclusion: fear, the unfavorable economic situation and the inadequate level of coping with the role of caregiver, were the main psychosocial characteristics that prevailed.

Cuidar de pessoas em paliação: o olhar do familiar cuidador / Caring for people undergoing palliation: the look of the family caregiver / Cuidar a personas en paliación: la mirada del cuidador familiar

Objetivo: Compreender a visão do familiar ao assumir o papel de cuidador de um ente em paliação. Método: Estudo exploratório e descritivo de abordagem qualitativa, realizado com 27 familiares cuidadores de pacientes com diagnóstico oncológico acompanhados num ambulatório de uma cidade de grande porte no estado de Pernambuco. Os dados foram coletados usando a entrevista semiestruturada e organizados no Software IRaMuTeQ®, considerando a Técnica de Análise de Conteúdo de Bardin, possibilitando assim a sua análise e discussão à luz da Teoria de Enfermagem Humanística. Resultados: Foi possível inferir que os familiares têm conhecimento sobre o diagnóstico de câncer; conhecem os riscos da doença e tratamento e, demonstram resiliência e altruísmo ao prestar os cuidados com amor e afeto. Reconhecem que para uma boa adesão ao tratamento, paciente e família precisam se sentirem acolhidos por toda equipe, com ênfase na equipe de enfermagem. Considerações finais: Possibilita refletir sobre a importância do familiar no processo de tratamento, e aponta para a necessidade de que a equipe esclareça sobre as mudanças que este familiar enfrentará no processo de cuidar, assim como de que seja dada visibilidade ao que são os cuidados paliativos, de modo a proporcional alívio ao sofrimento do paciente e família.

Objective: To understand the view of the family member when assuming the role of caregiver of a person undergoing palliation. Method: Exploratory and descriptive study with a qualitative approach, carried out with 27 family caregivers of patients with an oncological diagnosis followed at an outpatient clinic in a large city in the state of Pernambuco. Data were collected using semistructured interviews and organized in the IRaMuTeQ® Software, considering Bardin's Content Analysis Technique, thus enabling its analysis and discussion in the light of the Humanistic Nursing Theory. Results: It was possible to infer that family members are aware of the cancer diagnosis; they know the risks of the disease and treatment and demonstrate resilience and altruism when providing care with love and affection. They recognize that for good adherence to treatment, the patient and family need to feel welcomed by the entire team, with an emphasis on the nursing team. Final considerations: It makes it possible to reflect on the importance of the family member in the treatment process, and points to the need for the team to clarify the changes that this family member will face in the care process, as well as to give visibility to what palliative care is, in order to provide relief in the suffering of the patient and family.

Objetivo Comprender la mirada del familiar al asumir el rol de cuidador de una persona en paliación. Método: Estudio exploratorio y descriptivo con enfoque cualitativo, realizado con 27 cuidadores familiares de pacientes con diagnóstico oncológico seguidos en un ambulatorio de una gran ciudad del estado de Pernambuco. Los datos fueron recolectados mediante entrevista semiestructurada y organizados en el Software IRaMuTeQ®, considerando la Técnica de Análisis de Contenido de Bardin, posibilitando así su análisis y discusión a la luz de la Teoría Humanística de Enfermería. Resultados: Se pudo inferir que los familiares conocen el diagnóstico de cáncer; conocen los riesgos de la enfermedad y el tratamiento y demuestran resiliencia y altruismo al brindar atención con amor y afecto. Reconocen que para una buena adherencia al tratamiento, el paciente y la familia necesitan sentirse acogidos por todo el equipo, con énfasis en el equipo de enfermería. Consideraciones finales: Permite reflexionar sobre la importancia del familiar en el proceso de tratamiento, y apunta la necesidad de que el equipo aclare los cambios que este familiar enfrentará en el proceso de cuidado, así como dar visibilidad a lo que son los cuidados paliativos, con el fin de brindar alivio en el sufrimiento del paciente y su familia.

Subjective oral health measures in caregivers of patients with autism spectrum disorder and down syndrome: a preliminary study

This study aimed to address the subjective oral health measures of caregivers of individuals with autism spectrum disorder (ASD) and Down syndrome. This cross-sectional study included 15 caregivers of individuals with ASD (n = 7) and Down syndrome (n = 8). Sociodemographic data, sense of coherence (SOC) (SOC-13 scale), social support (Social Support Scale [MOS-SSS]), oral health-related quality of life (OHRQoL) (OHIP-14), and self-rated oral health assessed on a 5-point Likert scale were collected. A descriptive analysis was performed in addition to correlation analyses (Spearman correlation coefficient). Most primary caregivers were parents of the individual (86.6%). The age of the caregivers ranged between 40 and 59 years (60%). Most caregivers have had 9 to 11 years of education (53.3%). Monthly family income was less than USD 186,28 for ASD caregivers (57.2%) and between USD 327,56 and USD 931,40 for Down syndrome caregivers (50%). Of the caregivers, 33.3% reported good oral health and 33.3% reported neither good nor bad. The average SOC score, social support and OHRQoL was 48.9, 69.3 and 10.9, respectively. The higher the family income, the better the OHRQoL (rs = -0.62, p = 0.014). SOC was correlated with the score of the emotional support domain (rs = 0.54, p = 0.039). It was concluded that caregivers had a strong SOC and high perceived support. Moreover, caregivers did not report a high impact on OHRQoL A better understanding of the caregivers' protective and coping factors in caring for individuals with disabilities may better promote their quality of life.

Survey on health literacy and influencing factor of family caregivers of chronic disease patients in Beijing / 中华全科医师杂志

Objective:To survey the health literacy and related factors of family caregivers of patients with chronic diseases in Beijing.Methods:A survey was conducted from September to November 2018, among 1 350 family caregivers of patients with chronic diseases selected by stratified random sampling from 6 districts of Beijing. A self-filling questionnaire was used for the survey, which consisted of the basic information and health literacy of family caregivers. Health literacy included three parts: daily living habits, basic knowledge (knowledge of prevention and management of behavioral risk factors, knowledge related to chronic diseases and knowledge related to first aid) and chronic disease-related skills.Results:A total of 1 268 valid questionnaires were collected with a recovery rate of questionnaires was 93.9%. The median age of 1 268 family caregivers was 62 years (23-86) and 75.7% (960/1 268) were females. In terms of daily habits, smokers and drinkers accounted for 11.3% (143/1 268) and 21.5% (272/1 268) respectively; 82.7% (1 049/1 268) caregivers exercised regularly accounted, of whom 72.5% (761/1 049) exercised at least 4 times a week; 28.9% (366/1 268) caregivers had habit of light diet. In terms of basic knowledge of health literacy, 12.9% (163/1 268) of family caregivers mastered the basic knowledge (≥80% total score); family caregivers who were able to measure blood pressure, blood sugar, pulse, coping with hypoglycemia, cardiopulmonary resuscitation and dialing the emergency number correctly accounted for 27.4% (347/1 268), 18.1% (230/1 268), 15.1% (191/1 268), 15.7% (199/1 268), 6.0% (76/1 268) and 33.8% (429/1 268), respectively. For the six chronic disease-related skills, 23.7% (301/1 268) were able to call emergency number correctly and only 2.6% (33/1 268) were able to perform CPR. There were significant differences in the knowledge of behavioral risk factors ( χ 2=3.88, P=0.017), chronic disease related knowledge ( χ2=7.40, P=0.025), first-aid related knowledge ( χ2=12.04, P=0.002) and overall basic knowledge ( χ2=13.56, P=0.001) among family caregivers with different educational levels. There were significant differences in the knowledge of chronic diseases among family caregivers in different occupations ( χ2=8.78, P=0.012). Conclusion:The health literacy level of family caregivers of patients with chronic diseases in Beijing needs to be further improved, and there are differences in the health literacy of family caregivers with different educational qualifications and occupations.

Research progress of benefits finding for family caregivers of stroke patients / 中国实用护理杂志

The concept of benefit finding, the assessment tools and the status quo of benefit finding for family caregivers of stroke patients were elaborated, the influencing factors of benefit finding of family caregivers of stroke patients were summarized, the current problems and the development direction of future research were pointed out, aiming to provide a reference for clinical staff to conduct research on benefit finding of family caregivers of stroke patients in China.

Research progress on spiritual needs of family caregivers of cancer patients / 中国实用护理杂志

This article reviewed the concept of spirituality and spiritual needs of family caregivers of cancer patients, types of spiritual needs, assessment tools, priorities, and influencing factors, aiming to provide a reference for hospice teams to identify the spiritual needs of family caregivers of cancer patients and carry out spiritual care.

Qualitative Insights on the Caregiving of Gastrointestinal Cancer Patients with Low Quality of Life Scores

@#Introduction: Caring for gastrointestinal cancer patients can be demanding and to some, caregivers, burdensome; resulting in them having low quality of life (QOL) and thus they may become the next potential patients. Hence, true heartfelt experiences need to be captured to highlight issues and preventive measures that are not voiced out as most often caregiving is done in silence and out of responsibility. Therefore, this study aimed to explore on the caregivers’ insights on how caregiving experience has resulted in their low QOL. Methods: Seven family caregivers were purposively selected from two oncology centres in the Klang Valley, Malaysia for this qualitative case study. The selection was based on the low scores obtained from Malay Caregiver Quality of Life Cancer (MCQOL) questionnaire during an initial cross-sectional study. Following that, in-depth interviews were performed on those selected caregivers. Interview data were triangulated with the questionnaire and observations for validity. Member and expert checking were conducted to ensure credibility and trustworthiness. A thematic content analysis was later performed. Results: Thematic analysis revealed four distinct contributors to the caregivers’ QOL; namely, patients’ financial and stress management; impact towards physical, psychological, social (including relationship) wellbeing, communication; and support from families, organisation and community. Conclusion: The qualitative study discovered evidence for collaborative support needed to ensure better QOL for the caregivers.

O significado do consumo de psicofármacos pelos familiares de pessoas com transtorno bipolar / The meaning of psychotropic drugs use by family members of people with bipolar disorder / Significado del consumo de psicotrópicos por familiares de personas com trastorno bipolar

Familiares são importantes cuidadores de pessoas com transtorno bipolar (TB), podendo estar vulneráveis ao assumir esse cuidado e buscarem algum tipo de apoio, como o consumo de psicofármacos. O objetivo deste estudo foi compreender o significado que os familiares cuidadores atribuem para o próprio consumo do psicofármaco. Trata-se de estudo qualitativo com 32 participantes que utilizou o Interacionismo Simbólico (referencial teórico) e a Teoria Fundamentada nos Dados (referencial metodológico). Os dados foram analisados em três etapas: codificação aberta, axial e seletiva. O familiar é impactado por ter que assumir o cuidado e precisa buscar alternativas para se adaptar às dificuldades e efeitos disso. Assim, ele busca o consumo de psicofármacos, mas tal consumo é visto e compreendido de maneiras diferentes ao longo do processo de utilização. Os resultados desta pesquisa oferecem maior compreensão do fenômeno estudado e subsídios para a melhoria da assistência para essa clientela

Family members are essential caregivers of people with bipolar disorder (BD) and may be vulnerable upon assuming this care, seeking some support such as the use of psychotropic drugs. The objective of this study was to understand the meaning that family caregivers attribute to their psychotropics use. This is a qualitative study with 32 participants that used Symbolic Interactionism (theorical reference) and the Grounded Theory (methodological reference). Data were analyzed in three steps: open, axial and selective coding. The family member is impacted by having to assume the care and needs to look for alternatives to adapt to the difficulties and effects of this care. Hence, they seek the use of psychotropics, but this consumption is seen and understood differently throughout the utilization process. This study offers a better understanding of the studied phenomenon and subsidies to improve the assistance to this clientele.

La familia es importante cuidadora de personas con trastorno bipolar (TB) y por asumir ese cuidado se quedan vulnerables a la búsqueda de apoyo por medio del consumo de psicofármaco. Por ese motivo, el objetivo de este estudio fue el de comprender el significado que los familiares cuidadores atribuyen al proprio consumo de psicofármaco. El estudio ocurrió por análisis cualitativo de 32 participantes y utilizó el Interaccionismo Simbólico (referencial teórico) y la Teoría Fundamentada en Datos (referencial metodológico). El análisis de datos ocurrió en tres etapas: la codificación abierta, axial y selectiva. El familiar es impactado por asumir el cuidado y necesita buscar alternativas para adaptarse a las dificultades y efectos de eso. Por lo tanto, se busca el consumo de psicofármacos, pero dicho consumo es visto y comprendido de diferentes maneras a lo largo del proceso de utilización. Los resultados de esta pesquisa ofrecen una comprensión más grande del fenómeno estudiado y ofrecen también subsidio para perfeccionamiento de la asistencia a eses clientes.

Percepções de cuidado ao idoso dependente: estudo qualitativo / Perceptions of care for dependent older adults: a qualitative study / Percepciones de cuidado a ancianos dependientes: estudio cualitativo

Objetivo: compreender as percepções de cuidadores familiares sobre os cuidados aos idosos dependentes. Método: estudo qualitativo na perspectiva do Interacionismo Simbólico, conduzido pelo movimento interpretativo das experiências de cuidado de idosos acamados, após aprovação dos Comitês de Ética em Pesquisa das instituições envolvidas. Participaram oito cuidadores residentes em Palmas, TO, em janeiro a julho de 2020. Os dados foram coletados por meio da observação não participante e entrevista semiestruturada e utilizou-se a análise de conteúdo. Resultados: a partir das falas dos cuidadores, identificaram-se três categorias: "Retribuindo os cuidados de outrora", "Bem-estar, gratidão e afeto" e "Dificuldades no cuidado". O ato de cuidar foi expresso como oportunidade para retribuição, envolvido por sentimentos de satisfação, alegrias e gratidão, mas também, tristeza, mágoa, frustração, impotência e medo da finitude do idoso. Considerações finais: o ato de cuidar de idosos dependentes é marcado por experiências afetivas que provocam vivências de momentos de alegrias e de dificuldades.

Objective: to understand family caregivers' perceptions of care for dependent older adults. Method: this qualitative study was conducted, after research ethics committee approval, from the perspective of Symbolic Interactionism, by the interpretative movement of experiences of caring for very dependent older adults. Eight caregivers residing in Palmas, Tocantins, participated between January and July 2020. Data were collected through non-participant observation and semi-structured interview, and underwent content analysis. Results: the categories identified from the caregivers' statements were: "Repaying care from the past", "Wellbeing, gratefulness, and affection" and "Difficulties in care". The act of caring was expressed as an opportunity for retribution, enveloped in feelings of satisfaction, joy, and gratitude, but also sadness, grief, frustration, impotence, and fear of the older person's finitude. Final considerations: the act of caring for dependent older people is marked by affective experiences that lead to moments of joy and difficulties.

Objetivo: comprender las percepciones de los cuidadores familiares sobre el cuidado de ancianos dependientes. Método: estudio cualitativo en la perspectiva del Interaccionismo Simbólico, realizado por el movimiento interpretativo de las experiencias de cuidado a ancianos encamados, tras la aprobación de los Comités de Ética en Investigación de las instituciones involucradas. Participaron ocho cuidadores residentes en Palmas, TO, de enero a julio de 2020. Los datos fueron recolectados a través de observación no participante y se utilizó análisis de contenido. Resultados: a partir de las declaraciones de los cuidadores, fueron identificadas tres categorías: "Retribuyendo el cuidado del pasado", "Bienestar, gratitud y afecto" y "Dificultades en el cuidado". El acto de cuidar se expresó como una oportunidad de retribución, acompañado de sentimientos de satisfacción, alegría y gratitud, pero también de tristeza, pena, frustración, impotencia y miedo a la finitud del anciano. Consideraciones finales: el acto de cuidar a ancianos dependientes está marcado por experiencias afectivas que conducen a vivencias de momentos de alegría y dificultades.

Hermeneutic phenomenology of lived experience of family caregivers of critically-ill patients sustained by healthcare technologies in Benin City, Nigeria

Background: Critical illness causes a severe financial impact on households not only because of illness-related inability to work but also because of the cost of medical care. Although the patients have the potential for recovery, they are usually presented with a life-threatening situation. Our study aimed to explore the lived experience of family caregivers caring for critically-ill patients. Materials and Methods: A qualitative study using a hermeneutic phenomenological design, to explore the lived experience of ten family caregivers caring for critically-ill patients admitted to the University of Benin Teaching Hospital, Benin-city in 2022. This study followed a hermeneutic phenomenological design using an in-depth interview of ten family caregivers who met the inclusion criteria: a family member who participated actively in the care was included. Data were collected, transcribed, and analyzed using Nvivo software and Paul Ricoeur’s theory for interpretation. Results: Based on Paul Ricoeur’s theory of interpretation, five themes were identified as the experience of family caregivers: caring neglect, psychological support, and words of encouragement, lack of confidence in nursing intervention, hopeless situation, and financial burden. Conclusion: This study shows that understanding the experience of family caregivers provides better and quality care. It also found that the hospital management needs to be aware of the identified caring neglect among family caregivers and provide a comprehensive health policy to accommodate their physiological needs while in the hospital

The current status of learned helplessness among family caregivers of advanced digestive tract tumor patients and its influence factors / 中国实用护理杂志

Objective:To investigate the current status of family caregivers learned helplessness in patients with advanced digestive tract tumor and analyze its influencing factors, so as to provide reference for the physical and mental management of cancer families.Methods:Totally 181 family caregivers of advanced digestive tract tumor patients from July 2018 to November 2019 in 4 gradeⅢclass A hospitals in Fuzhou were selected by convenient sampling method for investigation with the general information questionnaire and Learned Helplessness Scale. Multiple linear regression analysis was used to analyze the influencing factors of learned helplessness of family caregivers of patients with advanced digestive tract tumor.Results:The total score and the average items score of learned helplessness was (38.61 ± 15.40), (2.15 ± 0.88) points, which was at a lower level. Multiple linear regression analysis showed that the gender of caregiver, physical condition of caregivers, average monthly household income were significant influencing factors of family caregivers learned helplessness in patients with advanced digestive tract tumor ( P<0.05). Conclusions:The learned helplessness of family caregivers of patients with advanced digestive tract tumor is at a mild level. Nurses should focus on the physical and mental conditions of low-income groups and female caregivers with advanced digestive tract tumor, and regularly assess their nursing needs and health status to improve their quality of life.

The mediating effect of meaning in life between family care and subjective well-being of family caregivers of community disabled elderly / 中华行为医学与脑科学杂志

Objective:To explore the mediating effect of meaning in life between family care and subjective well-being of family caregivers of community disabled elderly, and provide reference for improving caregivers' mental health.Methods:From August 2019 to August 2020, A total of 526 family caregivers of disabled elderly from several communities in Guangzhou were household surveyed by general information questionnaire, family APGRA index, Chinese meaning in life questionnaire and general well-being schedule.SPSS 22.0 software was used for descriptive analysis, correlation analysis and mediating effect analysis.AMOS 22.0 software was used for structural equation model construction, and Bootstrap method was used for mediation effect test.Results:The score of subjective well-being, family care, meaning in life of family caregivers of disabled elderly were (69.41±19.17), (6.42±2.56), (42.96±7.61), respectively.The family care was positively correlated with meaning in life and subjective well-being ( r=0.275, 0.289, both P<0.01) and a positive correlation was found between meaning in life and subjective well-being ( r=0.345, P<0.01). Meaning in life had a partial mediating effect between family care and subjective well-being.The mediating effect value was 4.304, accounting for 30.6% of the total effect value. Conclusion:The family care can directly or indirectly affect caregivers' subjective well-being through meaning in life.

Research progress on stigma in family caregivers of patients with schizophrenia / 四川精神卫生

The purpose of this article is to reviews the research done on stigma in family caregivers of patients with schizophrenia， with a view to reducing stigma in the population and providing references for mental health workers to formulate relevant intervention measures. This paper conducted a review on the domestic and foreign literature on stigma in family caregivers of patients with schizophrenia， in which the relevant research progress was elaborated from four aspects： related concepts， assessment tools， influencing factors and intervention measures， and the existing limitations and directions for future research were summarized.

Promoção do cuidado seguro em áreas críticas pediátricas: participação e atribuição dos acompanhantes / Promotion of safe care in critical pediatric areas: participation and attribution of the companions / Promoción de la atención segura en áreas pediátricas críticas: participación y atribución de los acompañantes

Objetivo: analisar a participação e a atribuição dos acompanhantes de criança hospitalizada na promoção do cuidado seguro em áreas críticas. Método: estudo qualitativo exploratório-descritivo realizado em áreas críticas de três hospitais de Porto Alegre, RS, no período de novembro a dezembro de 2017. A seleção da amostra foi intencional e com participação de 34 acompanhantes de crianças hospitalizadas há pelo menos sete dias. Entrevistas semiestruturadas foram gravadas em áudio e transcritas para análise de conteúdo do tipo temática. Resultados: o processo de análise das entrevistas gerou duas grandes categorias: Participação do acompanhante para o cuidado seguro, auxiliando em situações de risco e Atribuição dos acompanhantes na promoção da segurança do paciente pediátrico, colaborando com um ambiente seguro. Conclusão: os acompanhantes percebem que sua presença e colaboração no cuidado de crianças hospitalizadas em áreas críticas, bem como a confiança e interação deles com a equipe de saúde são fatores coadjuvantes na promoção do cuidado seguro.

Objective: to analyze the participation and role of caregivers of hospitalized children in promoting safe care in critical areas. Method: qualitative exploratory-descriptive study conducted in critical areas of three hospitals in Porto Alegre, RS, from November to December of 2017. The sample selection was intentional and with the participation of 34 companions of children hospitalized for at least seven days. Semi-structured interviews were audio-recorded and transcribed for thematic content analysis. Results: the process of analyzing the interviews generated two major categories: Participation of the companion for safe care, assisting in risky situations, and Attribution of companions in promoting the safety of pediatric patients, collaborating with a safe environment. Conclusion: the caregivers perceive that their presence and collaboration in the care of children hospitalized in critical areas, as well as their trust and interaction with the health team, are supporting factors in promoting safe care.

Objetivo: analizar la participación y la atribución de los cuidadores de niños hospitalizados en promover un cuidado seguro en áreas críticas. Método: estudio cualitativo exploratorio-descriptivo, realizado en áreas críticas de tres hospitales de Porto Alegre, Rio Grande do Sul, de noviembre a diciembre de 2017. La selección de la muestra fue intencional, participaron 34 acompañantes de niños hospitalizados durante al menos siete días. Las entrevistas semiestructuradas se grabaron en audio y se transcribieron para el análisis de contenido temático. Resultados: el proceso de análisis de las entrevistas obtuvo dos grandes categorías: Participación del acompañante en el cuidado seguro, auxiliando en situaciones de riesgo, y Atribución de los acompañantes en la promoción de la seguridad de los pacientes pediátricos, colaborando con un ambiente seguro. Conclusión: los acompañantes advierten que su presencia y colaboración en el cuidado de los niños hospitalizados en áreas críticas, así como su confianza y seguridad respecto al equipo de salud, son factores coadyuvantes en la promoción de una atención segura.

O cuidado na perspectiva de familiares de pessoas com deficiência: revisão integrativa / Caring from the perspective of family members of people with disabilities: an integrative review / El cuidado desde la perspectiva de los familiares de personas com discapacidad: uma revisón integrativa

Esta revisão integrativa tem como objetivo compreender como os familiares cuidadores pensam o cuidado de pessoas com deficiência. A busca pelos estudos foi realizada nas bases de dados Scopus, Web of Science, PsycInfo, INDEXPSI, LILACS, SciELO. Foi estipulado o período de tempo que compreende os últimos dez anos de pesquisa (2010-2020). Após a aplicação dos critérios de inclusão e exclusão foram selecionados 19 artigos. A análise dos dados foi categorizada em cinco grandes temas: (a) O cuidado e suas implicações emocionais, psicológicas, físicas, comportamentais e sociais; (b) O cuidado como solidão; (c) O cuidado e suas demandas práticas; (d) O cuidado e as estratégias de enfrentamento; (e) O cuidado e a representação de deficiência. Os resultados mostraram que o cuidado é compreendido conforme a cultura e crenças a respeito da deficiência, além de ocasionar implicações de diferentes ordens aos cuidadores familiares como, discriminações, ansiedade, depressão, solidão e dificuldades financeiras.

This integrative review aims to understand how family caregivers think about caring for a disabled person. The quest for the studies was performed in the databases Scopus, Web of Science, PsycInfo, INDEXPSI; LILACS and, SciELO. The period that comprises the last ten years of research has been stipulated (2010-2020). After applying the inclusion and exclusion criteria, 19 articles were selected. Data analysis was categorized into five major subjects: (a) Caring and its emotional, psychological, physical, behavioral, and social implications; (b) Caring as solitude; (c) Caring and its practical demands; (d) Caring and coping strategies; (e) Disability caring and representation. The results showed that caring is understood according to the culture and beliefs about the disability, in addition it causes different types of implications for family caregivers, such as discrimination, anxiety, depression, loneliness and, financial difficulties.

Esta revisión integrativa tiene como objetivo comprender qué piensan los familiares cuidadores sobre el cuidado de las personas con discapacidades. La búsqueda de los estudios se realizó en las bases de datos Scopus, Web of Science, PsycInfo, INDEXPSI, LILACS, y SciELO. Se ha estipulado el período de tiempo que comprende los últimos diez años de investigación (2010-2020). Después de aplicar los criterios de inclusión y exclusión, se seleccionaron 19 artículos. El análisis de datos se clasificó en cinco temas principales: (a) El cuidado y sus implicaciones emocionales, psicológicas, físicas, conductuales y sociales; (b) El cuidado como soledad; (c) El cuidado y sus exigencias prácticas; (d) El cuidado y las estrategias de afrontamiento; (e) El cuidado y la representación de personas discapacitadas. Los resultados mostraron que el cuidado se entiende de acuerdo con la cultura y creencias sobre la discapacidad, además de generar implicaciones de diferentes órdenes para los familiares cuidadores, tales como discriminación, ansiedad, depresión, soledad y dificultades económicas.