Search

This study aimed to understand the perceptions (difficulties, needs, positive and negative repercussions, strategies used and significant moments) of informal caregivers of people undergoing palliative and end-of-life care. An online questionnaire survey was administered, obtaining 70 responses. The data collected were subject to quantitative and qualitative analysis. Data revealed that the majority of respondents are Portuguese, female, with an average age equal to or greater than 54 years, with high education and educational qualifications, having become caregivers in the face of a family member's severe illness or dependence. The results show that caring has common conditions but reveals a unique process influenced by multiple variables, including perceived support. In the case of end-of-life care, they represent a greater burden on caregivers, although care is a dynamic process in which facilitating, protective and other hindering factors interact, adaptive strategies, depending on individual resources, whether of the person being cared for, or of the caregiver, as well as other determinants of health and social support, as well as the sense of purpose, selflessness and usefulness experienced by the caregiver. [ABSTRACT FROM AUTHOR]

Background: As we move towards an aging society, more people face the need of taking the task of caring for persons with dementia. These people' neuropsychiatric symptoms are challenging for caregivers and trigger an extreme burden. However, the diversity of responses among caregivers suggests that personal resources may be protective of their mental health. Objective: this study sought to ascertain whether there were differences between the coping and emotion regulation strategies used by informal caregivers of persons with dementia and non-caregivers. It also examined whether these variables mediated the relationship between neuropsychiatric symptoms (persons with dementia) and burden (caregivers). Method: 138 participants, divided into two groups (informal caregivers and dementia persons, and non-caregivers) answered the Emotional Regulation Questionnaire and the Toulosian Coping Scale (short version). The Zarit Caregiver Burden Interview (short version) and the Neuropsychiatric Inventory (short version) were answered by the caregivers. Results: There were significant differences between groups regarding the Emotional Suppression strategy, with higher values for the caregivers. No significant differences were found in the coping strategies. It was also found that an increase in neuropsychiatric symptoms corresponded to an increase in burden. However, coping strategies and emotional regulation did not mediate the relationship between neuropsychiatric symptoms and caregivers' burden. Conclusions: The act of caring can cause great burden. Providing adequate resources to caregivers can help them choose more adaptive caregiving strategies and support the burden they are subjected to. [ABSTRACT FROM AUTHOR]

Copyright of RIIS: Revista de Investigação & Inovação em Saúde is the property of RIIS: Revista de Investigacao & Inovacao em Saude and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of RIIS: Revista de Investigação & Inovação em Saúde is the property of RIIS: Revista de Investigacao & Inovacao em Saude and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Among informal caregivers - those who do not receive a salary - of people with disabilities it is common for them to give up their lives to take care of their loved one, presenting difficulties in maintaining interpersonal relationships, leisure, work and health. Therefore, a socioeducational support network is important to assist them in coping with everyday difficulties. The aim of the study was to evaluate whether there was an improvement in the quality of life of caregivers of people with disabilities participating in a continuous action extension project and the contribution that the social/educational support network formed by the group generated in their lives in a time frame between 2017 and 2021. Data were collected from the Quality of Life Assessment questionnaires (SF-36) and the Caregivers Perception Assessment regarding the formation of a support network and its role in their lives. No differences in quality of life were identified over the period of interest, including the COVID-19 pandemic years. The caregivers demonstrated that there was a positive contribution in their lives due to their participation in the extension project. Thus, university extension can be an ally in the process of improving and maintaining the quality of life of caregivers. [ABSTRACT FROM AUTHOR]

The burden of the informal caregiver role poses a significant threat to the caregiver's physical and psychological health, with repercussions on their general well-being. It becomes necessary to identify their needs, and for that, a study was developed to assess the needs and characterize the psychosocial profile of the informal caregiver "Cuidar Maior". Most caregivers reported not having access to any type of resource in the community, including not receiving training to provide care, technical help, or having access to support groups, health measures, or social support. All caregivers reported having access to a health professional but not a social worker. In view of the lack of support in care and the requirement to provide it, and the absence of timely responses in the community, the construction and development of m-health tools that facilitate the provision of care by caregivers, which do not necessarily require a move to an institution, and which allow innovative, quick, and practical responses are necessary. It is evident that social services must intervene in the community and supervise these caregivers, allowing them to guide them towards the social resources available and informing them of their rights in this vulnerable situation. [ABSTRACT FROM AUTHOR]

Copyright of Enfermagem Brasil is the property of Atlantica Editora and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Revista Família, Ciclos de Vida e Saúde no Contexto Social (REFACS) is the property of Universidade Federal do Triangulo Mineiro, Instituto de Ciencias da Saude and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Revista Bioetica is the property of Conselho Federal de Medicina and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Enfermagem Brasil is the property of Atlantica Editora and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The research investigated whether the emotional burden of dementia caregivers is affected by the patients' social cognition deficits and neuropsychiatric symptoms. The study population comprises patients with dementia monitored by a Geriatric Service of a University Hospital at Fortaleza, Ceará, Brazil, and their caregivers. This is a cross-sectional study with a single collection of data. Data were obtained from 14 patients diagnosed with dementia and 14 caregivers. The scales used in this study were: Zarit Burden Interview Scale, Quality of Life Alzheimer Dementia, Clinical Dementia Rating Scale, and Neuropsychiatric Inventory. For the investigation of Social Cognition, the Hinting Task, ToM Stories and Reading the Mind in the Eyes Test scales were used. The mean age of the patients was 81.64; and all patients had relatives as caregivers. Caregivers had 68.5 of mean age, the majority of whom were women (92.8%). Most of them worked exclusively as a caregiver for the relative with dementia (71%). The scores of the social cognition scales were considered low when compared to previous studies. The scale with greater performance was the Hinting Task, with 61.15%, considerably higher than the percentage of correct answers from ToM Stories (32.1%) and RMET (32.4%). Patients with poorer performance in recognizing facial expressions, assessed by RMET, showed greater irritability (r = -0.829). The level of dependence and the degree of dementia were strongly correlated with caregiver burden (r = 0.931 and r = 0.635). Lower family income was related to a more disturbance in the caregiver's health due to the care of the family member (r = -0.805, p <0.001). The scales of social cognition showed that there is, in fact, a deficit among patients with dementia. Also, 57,1% of caregivers had moderate levels of emotional overload related to patient care. [ABSTRACT FROM AUTHOR]

Objective: to create and validate an educational guide as a technological resource to support caregivers and family members of the elderly with Alzheimer's. Method: methodological research guided by Pasquali's model for content validation, developed in four stages: literature review, in the search for knowledge synthesis; construction of the first version and production of the educational guide; content validation by expert judges; construction of the second version. The data obtained were statistically analyzed based on the minimum agreement index of 80%. Review of the guide for drafting the final version in the fourth stage. A study conducted nationwide, through digital means, reaching the North, Northeast and Midwest regions of Brazil. Results: 15 expert judges participated in the validation. The content of the educational guide obtained a global content validity index of 0.90 in a single round. Conclusion: the educational guide proved to be adequate and valid as a technological resource in supporting family members and caregivers of elderly people with Alzheimer's. [ABSTRACT FROM AUTHOR]

Copyright of Avances en Enfermería is the property of Editorial Universidad Nacional de Colombia and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Enfermagem Brasil is the property of Atlantica Editora and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Digital platforms are a resource in health. Objective: The study aims to describe the design, development, and validation of the content of the feeding a person, for integration into a digital platform, designed to support family caregivers. Methodology: The production of content was carried out by a focus group that, based on the literature and through the plain language methodology, designed the material to be included in the platform. The material produced was validated by 15 experts using the Delphi technique and subsequently subjected to evaluation by 8 caregivers. Results: Dentition, dietary needs, hydration, care before, during, and after feeding the person, changes in swallowing, and special situations were the contents identified according to the needs of caregivers. The information has been refined until the final structure and contents presented a simple language, logical organization, appropriate to the little differentiated population with low health literacy. Conclusion: The contents were considered facilitators of informed decision-making by caregivers of people with impaired self-feeding. [ABSTRACT FROM AUTHOR]

Objective: to investigate the social support networks of elderly people with disabilities and the innovative care technologies implemented for elderly people with disabilities and caregiver support. Method: exploratory-descriptive qualitative approach, carried out from April to October 2016. Twenty-six non-governmental institutions participated. A semi-structured interview was applied; Thematic Analysis for data treatment. Results: It was evidenced that strategies such as groups of coexistence, support groups, art as therapy and leisure activities can be considered care technologies. It was highlighted how families are being prepared to care for elderly people with disabilities, since a portion does not have a caregiver or presents an insufficient family support network. Conclusion: there was a need to reflect on the expansion of services aimed at the social integration of the elderly with disabilities, and the creation of day centers for this clientele, one of them. [ABSTRACT FROM AUTHOR]

Objective: to analyze how the family care with children and adolescents with Epidermolysis Bullosa is performed. Method: integrative literature review, held in September 2018 with pre-defined protocol, whose eligibility criteria contemplated eight studies in the final sample, which responded to the following question: How is the family care with children and adolescents with Epidermolysis Bullosa performed? Results: the family care along with their children with Epidermolysis Bullosa is influenced by health professionals' assistance, who are unaware of the illness and, therefore, do not provide the necessary guidance, leaving parents unprepared for the daily care with their children. Conclusion: the scientific literature little addresses the experience of care, within the family, dedicated to their children affected by Epidermolysis Bullosa. [ABSTRACT FROM AUTHOR]

The growth of privatization of healthcare, driven by the expansion of homecare programs, based on official and legal social policy guidelines, has revealed processes that hold families responsible, in particular women. The objective of this article is to analyze the process of holding families responsible for healthcare under a hospital's "Interdisciplinary Homecare Program". This study, of an exploratory and qualitative character, involved interviews with the family caregivers in this program. The results point to difficulties and lack of support from the healthcare network and other social policies in the municipalities where the families live, the lack of public polices for the service of caregivers and a reality of making women responsible for and overburdened with family care. [ABSTRACT FROM AUTHOR]

This research aimed to analyze the relationship between the environmental variables present in the waiting room of a private hospital emergency, the physical and emotional states of the consumer and their reflexes on perception and emotional response in the use of the service. Therefore, a large hospital in Recife was analyzed by conducting a survey with 300 consumers between patients and caregivers. Data were analyzed by logistic regression. The results showed that the physical conditions of the environment that most related to the consumer's environmental perception were color, aroma, layout and temperature and that the physical and emotional states negatively impact the consumer's perception and emotional response, bringing six relevant theoretical contributions. The originality of this study is based on the fact that there are no empirical studies that associate the physical and emotional states of consumers with the environmental conditions, perception and emotional response to the emergency services environment; comparative analysis between patients and caregivers in emergency service settings. [ABSTRACT FROM AUTHOR]

Copyright of ConScientiae Saúde is the property of Nove de Julho University and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Portuguese Journal of Mental Health Nursing / Revista Portuguesa de Enfermagem de Saúde Mental is the property of Portuguese Society of Mental Health Nursing and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Portuguese Journal of Mental Health Nursing / Revista Portuguesa de Enfermagem de Saúde Mental is the property of Portuguese Society of Mental Health Nursing and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Caregivers of individuals with chronic disease require interventions aimed at their own care, knowledge, and home care approach. The aim of this study was to evaluate the implementation of a nursing intervention in the wellbeing of caregivers of patients in need of home care in health institutions in Boyacá, Colombia. Materials and Methods: This was quasi-experimental study with pre-test and posttest, in a group of 72 caregivers. The intervention group had three educational sessions based on Swanson's Theory of Caring; the control group received conventional intervention. The study used the nursing results classification instrument: emotional health of the principal caregiver, stressing factors of the family caregiver, spiritual health, performance of the principal caregiver, preparation of the principal home care caregiver, possible resistance of the family caregiver, and role execution. Results: The intervention had an effect on the wellbeing of the caregiver of individuals in need of home care. Discussion: The control group evidenced difficulty for wellbeing with traditional care, while caring for the patient. Conclusions: Nursing interventions structured on theory show achievements in care for the wellbeing of individuals under special conditions; it is necessary to establish institutional strategies focused on humanized nursing care with disciplinary support. [ABSTRACT FROM AUTHOR]

Copyright of Portuguese Journal of Mental Health Nursing / Revista Portuguesa de Enfermagem de Saúde Mental is the property of Portuguese Society of Mental Health Nursing and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This article discusses the impact of functionality and social participation of children with cerebral palsy on the quality of life of parents. The study analyzed the relationship between motor function, social participation, and socioeconomic level of children with cerebral palsy and the quality of life of parents. Thirteen children aged between 3 and 14 years were evaluated, and a positive correlation was found between the social participation of children and the psychological health of parents. Furthermore, the greater the caregiver's need for assistance, the lower the interaction with the social environment. The study concludes that it is important to study the impact of social participation of children with cerebral palsy on family quality of life. [Extracted from the article]

This article describes the creation of an educational booklet to encourage self-care for caregivers of people with Amyotrophic Lateral Sclerosis (ALS). ALS is a neurodegenerative disease that causes loss of autonomy in daily activities, resulting in physical and mental burden for caregivers. The booklet covers topics such as the importance of self-care, physical and psychological well-being, routine planning, healthy eating, relaxation, and benefits. It is expected that the use of this booklet will improve the caregivers' quality of life and reduce physical and emotional burden, as well as decrease anxiety and depression rates. [Extracted from the article]

This article analyzes the burden and quality of life of caregivers of patients with Amyotrophic Lateral Sclerosis (ALS). The research was conducted with informal caregivers of people with ALS, over 18 years old and without cognitive impairment. Questionnaires were applied to assess the burden and quality of life before, during, and after a self-care program. The results showed that self-care strategies are necessary for the caregivers' health and that the combination of subjective and objective assessments of quality of life can be a new alternative. [Extracted from the article]

The article entitled "EVALUATION OF THE IMPACT OF SOCIAL DISTANCING ON CAREGIVERS' HEALTH BASED ON ICF - IISD-HCC" discusses the development of a clinical assessment tool to investigate the impact of social distancing on the health and quality of life of caregivers of people with Amyotrophic Lateral Sclerosis (ALS) during the Covid-19 pandemic. The study was approved by the Ethics Committee of UFRN and the caregivers' assessment tool consists of six sections, covering personal information, general health conditions, information about Covid-19, caregiver-patient relationship, health status in the context of social distancing, and socioeconomic conditions. The tool consisted of 102 questions and was able to encompass the biopsychosocial assessment in the context of social distancing among caregivers. [Extracted from the article]

Background: In Portugal, there are no records of children as caregivers. The international literature highlights that this is an important area of intervention for health professionals. Objectives: To analyze the primary care nurses’ perspective about young caregivers in the Autonomous Region of Madeira and identify areas of intervention. Methodology: A quantitative and descriptive study was conducted based on a questionnaire applied to a sample of 157 nurses of the Autonomous Region of Madeira. Results: Among the participating nurses, 23% had already contacted with young caregivers, 29% with young caregivers caring for their grandparents, 25% with young caregivers caring for parents with mental disorders, and 21% with young caregivers caring for parents with chronic diseases. The following areas of nursing intervention were identified, education, skills training, individual support and counselling. Conclusion: The aging of the population and the high prevalence of mental disorders increase the probability of children assuming the role of caregivers. We recommend that this study be replicated in mainland Portugal. Qualitative studies should also be conducted on the role of the dependent person and the young caregiver. [ABSTRACT FROM AUTHOR]

This article reports the work of a psychological intervention group. This group is focused in dealing with families during child hospitalization time in order to provide a reflection on their behavior. Also, a better understanding how to cope with anguish and fear during child illness. The therapeutic factors related to support groups were identified. This qualitative study was exploratory nature. All the therapeutic factors were identified and analyzed from the subjects' report. These groups were composed by caregivers of admitted children and psychology interns. The meetings occurred during seven months, lasting about 70 minutes. In total, 78 people were engaged within the groups developed and coordinated by psychology interns. It was verified that the groups provided a better coping, empowering the caregiver to support and be effective as children companion. The groups also showed to be effective in solving problems related to hospitalization. Furthermore, this procedure may represent a possibility for psychologists to work at the hospital, representing an important therapeutic resource aiming at the reduction of suffering from families and the hospitalized children. [ABSTRACT FROM AUTHOR]