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1.
Rev. Esc. Enferm. USP ; 53: e03466, Jan.-Dez. 2019.
Artigo em Inglês, Espanhol | LILACS, BDENF - Enfermagem | ID: biblio-1020391

RESUMO

RESUMEN Objetivo Describir la experiencia del cuidado familiar a la mujer con cáncer de mama durante el tratamiento, desde la perspectiva de los cuidadores en el contexto mexicano. Método Estudio cualitativo fenomenológico. Fueron realizadas entrevistas en profundidad con cuidadores de mujeres sobrevivientes de cáncer de mama seleccionados mediante muestreo intencional, acumulativo y secuencial. Se llevó a cabo un análisis de contenido convencional. Resultados Participaron siete cuidadores. Los cuidadores refieren sus experiencias positivas y negativas al asumir su rol de cuidadores informales en el contexto familiar. Sobre la fortaleza de la reciprocidad del cuidado y su recompensa, prevalecen los momentos críticos, los sentimientos negativos y la falta de recursos de apoyo durante la experiencia. Ello permite entender el vínculo del cuidado informal para potenciarlo con estrategias de afrontamiento y orientación especifica por parte del personal de enfermería. Conclusión Los participantes experimentaron una transformación en su identidad como cuidadores y al ser conscientes de su experiencia, fueron capaces de describir sus cualidades lo que incrementa sus estrategias de afrontamiento tanto de la enfermedad como de los desafíos del cuidado.


RESUMO Objetivo Descrever a experiência do cuidado familiar com a mulher com câncer de mama durante o tratamento, do ponto de vista dos cuidadores no contexto mexicano. Método Estudo qualitativo fenomenológico. Foram realizadas entrevistas em profundidade com cuidadores de mulheres sobreviventes ao câncer de mama selecionados por meio de amostragem intencional, acumulativa e sequencial. Foi realizada uma análise de conteúdo convencional. Resultados Participaram sete cuidadores. Os cuidadores relatam suas experiências positivas e negativas ao assumir seu papel de cuidadores informais no contexto familiar. Sobre a força da reciprocidade do cuidado e sua recompensa, prevalecem os momentos críticos, os sentimentos negativos e a falta de recursos de apoio durante a experiência. Isso permite entender o vínculo do cuidado informal para potencializá-lo com estratégias de enfrentamento e orientação específica por parte do pessoal de enfermagem. Conclusão Os participantes experimentaram uma transformação na sua identidade como cuidadores e, ao ser conscientes da sua experiência, foram capazes de descrever suas qualidades, o que aumenta suas estratégias de enfrentamento tanto da doença quanto dos desafios do cuidado.


ABSTRACT Objective To describe the experience of family care to women with breast cancer during treatment from the perspective of caregivers in the Mexican context. Method Qualitative phenomenological study. In-depth interviews were conducted with caregivers of women who survived breast cancer. Participants were selected by intentional, cumulative and sequential sampling. A conventional content analysis was performed. Results Participation of seven caregivers, who reported their positive and negative experiences when assuming their role as informal caregivers in the family context. On the strength of the reciprocity of care and its reward, prevailed critical moments, negative feelings, and lack of support resources during the experience. This enables the understanding of the informal care bond in order to enhance it with coping strategies and specific guidance from the nursing staff. Conclusion Participants experienced a transformation in their identity as caregivers and by being aware of their experience, they could describe their qualities, which increased their coping strategies with the disease and the care challenges.


Assuntos
Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Neoplasias da Mama/terapia , Família , Cuidadores/psicologia , Enfermagem Oncológica , Entrevista , Pesquisa Qualitativa
2.
Rev Med Suisse ; 15(671): 2110-2113, 2019 Nov 13.
Artigo em Francês | MEDLINE | ID: mdl-31742943

RESUMO

In the absence of curative pharmaceutical treatment for evolving cognitive impairment, non-drug interventions are key components in patients' and caregivers' care. These interventions, when combined and adapted to the needs of the patient and the caregiver, allow for maintaining functional autonomy, decreasing caregiver burden and, possibly, slowing down cognitive decline. An on-going study in Suisse Romande (INDID-MCI-QOL) assesses the effect of the number and type of interventions conducted over a year on the evolution of physical, psychological and cognitive health in this population.


Assuntos
Cuidadores/psicologia , Disfunção Cognitiva/psicologia , Disfunção Cognitiva/terapia , Qualidade de Vida , Humanos
3.
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 11(5): 1213-1218, out.-dez. 2019.
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1022326

RESUMO

Objetivo: Descrever a tipologia do cuidado realizado pelo familiar à criança com doença falciforme segundo Colliére. Método: Estudo qualitativo, descritivo, desenvolvido com familiares de crianças com doença falciforme, em um hospital geral de Vitória por meio da entrevista semiestruturada. Os dados foram interpretados à luz do Referencial Teórico de Collière e submetidos à Análise Temática. Resultados: a família se deparada com profissionais despreparados no momento da descoberta da doença. Quanto aos cuidados, houve predomínio dos cuidados de manutenção relacionados ao momento do diagnostico, brincadeiras, medicação diária, hidratação corporal, alimentação, eliminação e roupas. Já os reparadores ficaram restritos a situações emergenciais. Conclusão: é necessário capacitar os profissionais que atendem as crianças com doença falciforme para melhor satisfação das suas necessidades e de sua família


Objective: This work aims to describe the type of care provided by relatives for children with sickle cell anemia according to Collière. Methods: It is descriptive study with a qualitative approach, which was carried out with relatives of children bearing sickle cell anemia in a general hospital in Vitória city, Espírito Santo State, Brazil, by using semi-structured interviews. Data were interpreted in light of the Collière's Theoretical Reference and submitted to Thematic Analysis. Results: Families had to deal with the health care professionals' lack of skill needed to convey the diagnostic. Also, there was a predominance of the maintenance care related to the time of diagnosis, playing, daily medication, body hydration, diet, elimination, and clothing. Nonetheless, repair care was restricted to emergency situations. Conclusion: It is necessary to train the professionals who care for children with sickle cell anemia to better meet their needs and those of their families


Objetivo: Describir la tipología del cuidado realizado por el familiar al niño con enfermedad falciforme según Colliére. Método: Estudio cualitativo, descriptivo, desarrollado con familiares de niños con enfermedad falciforme, en un hospital general de Vitória por medio de la entrevista semiestructurada. Los datos fueron interpretados a la luz del Referencial Teórico de Collière y sometidos al Análisis Temático. Resultados: la familia se deparó con profesionales despreparados en el momento del descubrimiento de la enfermedad. En cuanto a los cuidados, hubo predominio de los cuidados de mantenimiento relacionados al momento del diagnóstico, bromas, medicación diaria, hidratación corporal, alimentación, eliminación y ropa. Los reparadores quedaron restringidos a situaciones de emergencia. Conclusión: es necesario capacitar a los profesionales que atienden a los niños con enfermedad falciforme para mejor satisfacción de sus necesidades y de su familia


Assuntos
Humanos , Masculino , Feminino , Criança Hospitalizada , Cuidadores/psicologia , Pessoal Técnico de Saúde/educação , Anemia Falciforme/prevenção & controle , Brasil , Família , Capacitação Profissional
4.
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 11(5): 1300-1306, out.-dez. 2019.
Artigo em Inglês, Português | LILACS, BDENF - Enfermagem | ID: biblio-1022356

RESUMO

Objective: The study's goal has been to gain further understanding about the social support networks of families with cerebral palsy bearing children. Methods: It is a descriptive-exploratory study with a qualitative approach, which was carried out in the Associação de Pais e Amigos dos Excepcionais (APAE) [Special Person's Parents and Friends Association in Brazil], from a municipality located in the South of Brazil, with mothers and fathers of cerebral palsy bearing children. Data were collected through interviews from April to May 2017, according to the ethical precepts established by the Resolution No. 466/12. Results: It was verified that the social network is composed by the family and, mainly, by health professionals and social assistance in referral institutions, such as the APAE. Conclusion: The support networks are essential for the families of children bearing cerebral palsy to adequately take care of their children. Furthermore, health professionals can provide guidance on the child's needs and support for family care


Objetivo: Conhecer as redes de apoio social das famílias de crianças com paralisia cerebral. Métodos: Estudo qualitativo, exploratório e descritivo, realizado na Associação de Pais e Amigos dos Excepcionais, de um município situado no sul do Brasil, com mães e pais de crianças com paralisia cerebral. A coleta das informações ocorreu entre abril e maio/2017, por meio de entrevistas. Foram respeitados todos os preceitos éticos estabelecidos pela resolução nº. 466/12. Resultados: Constatou-se que a rede social é composta pela família e, principalmente, pelos profissionais de saúde e de assistência social em instituições de referência como a Associação de Pais e Amigos dos Excepcionais. Conclusão: As redes de apoio são imprescindíveis para que as famílias de crianças com paralisia cerebral possam cuidar adequadamente de seus filhos. Os profissionais de saúde podem prestar orientações sobre as necessidades da criança e suporte para o cuidado familiar


Objetivo: Conocer las redes de apoyo social de las familias de niños con parálisis cerebral. Métodos: Estudio cualitativo, exploratorio y descriptivo, realizado en la Asociación de Padres y Amigos de los Excepcionales, de municipio situado en el sur de Brasil, con madres y padres de niños con parálisis cerebral. La recolección de informaciones ocurrió entre abril y mayo/ 2017, por medio de entrevistas. Se respetaron todos preceptos éticos establecidos por la resolución nº. 466/12. Resultados: Se constató que la red social está compuesta por la familia y, principalmente, por los profesionales de salud y de asistencia social en instituciones de referencia como la Asociación de Padres y Amigos de los Excepcionales. Conclusión: Las redes de apoyo son imprescindibles para las familias de niños con parálisis cerebral puedan cuidar adecuadamente de sus hijos. Los profesionales de salud pueden proporcionar orientación sobre las necesidades del niño y el apoyo al cuidado familiar


Assuntos
Humanos , Masculino , Feminino , Criança , Adulto , Família , Paralisia Cerebral/psicologia , Cuidadores/psicologia , Sistemas de Apoio Psicossocial
5.
Rev Infirm ; 68(254): 29-30, 2019 Oct.
Artigo em Francês | MEDLINE | ID: mdl-31587848

RESUMO

What is the common thread to ensure that the caregiver-patient relationship plays an integral role in healthcare facilities? The origins date to 1973, with the evolution of the nursing programme. The patient moves from the object stage to the subject stage. To date, he is considered a full "person" in all aspects, psychic, physical, cultural and social.


Assuntos
Cuidadores/psicologia , Instalações de Saúde , Relações Interpessoais , Humanos , Enfermagem/organização & administração
6.
Sante Publique ; Vol. 31(3): 405-415, 2019.
Artigo em Francês | MEDLINE | ID: mdl-31640328

RESUMO

INTRODUCTION: Poor oral health in persons with schizophrenia is a major public health issue affecting 600,000 people in France. The aim of this article was to present the different stages in the development of a specific oral health educational program for persons with schizophrenia. It takes into account experimental knowledge of these persons and presents the results of the feasibility study. PATIENTS AND METHOD: The focus group method was applied to a group of health professionals and users to highlight an exploratory corpus in order to develop an oral health educational program. An expert group including persons with schizophrenia among others validated the fields and tools of this program. A feasibility study was then conducted in a control group of 7 persons with schizophrenia. RESULTS: Altogether, 26 persons participated in this feasibility study. The main fields investigated by the expert group aimed to promote personal responsibility for one's health, to improve access to the healthcare system and to promote the global management of health. The feasibility study showed the ability of this program to change persons with schizophrenia representations and knowledge of this health problem. Most educational tools were considered relevant. CONCLUSION: An oral health educational program was built as part of a caregiver-persons with schizophrenia partnership and showed its feasibility. A multicentric randomized trial is currently ongoing to assess the efficacy of this program with a high level of proof.


Assuntos
Cuidadores/psicologia , Saúde Bucal/educação , Educação de Pacientes como Assunto/organização & administração , Esquizofrenia/terapia , Estudos de Viabilidade , Grupos Focais , França , Humanos
7.
Rev Lat Am Enfermagem ; 27: e3200, 2019 Oct 14.
Artigo em Português, Inglês, Espanhol | MEDLINE | ID: mdl-31618393

RESUMO

OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty. METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations. RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050). CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos/psicologia , Incerteza , Adaptação Psicológica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/estatística & dados numéricos , Estudos Transversais , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Percepção , Fatores Socioeconômicos , Espiritualidade , Inquéritos e Questionários , Adulto Jovem
8.
Soins Psychiatr ; 40(324): 25-28, 2019.
Artigo em Francês | MEDLINE | ID: mdl-31623803

RESUMO

Pregnancy and motherhood are additional ordeals for young unaccompanied girls, a particularly vulnerable section of the population. They are marked by the revival of the traumatic valence, the need to reconstruct themselves through the pregnancy and the importance of establishing a relationship of trust with the professionals supporting them. A qualitative study was carried out through the prism of the perspective of these professionals.


Assuntos
Cuidadores/psicologia , Criança Abandonada , Menores de Idade , Refugiados , Adolescente , Criança , Feminino , Humanos , Gravidez , Pesquisa Qualitativa
9.
J Frailty Aging ; 8(4): 210-214, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31637408

RESUMO

BACKGROUND: Home-based primary care (HBPC) provides team-based clinical care for homebound patients who have difficulty accessing typical outpatient care. Interdisciplinary team members also provide social and emotional support and serve as a resource for family caregivers, who often experience significant emotional stress. OBJECTIVES: This qualitative study explores the impact of HBPC on family caregivers to identify aspects of the program that caregivers find most helpful and meaningful as well as areas for improvement. DESIGN: Semi structured recorded interviews were conducted with family caregivers of frail, elderly homebound patients. Interviews included the following topics: overall program satisfaction and suggestions for improvement. SETTING: A HBPC program serving patients in Queens, Nassau and Suffolk counties in New York. PARTICIPANTS: Nineteen family caregivers: 13 women, 6 men; 10 were adult children; 6 were spouses, and 3 were other family members of patients in a HBPC program. MEASUREMENTS: Thematic coding of all recorded transcribed interviews was prepared by 3 qualitative coders. Interrater reliability was conducted to ensure reliability across coders before themes were disseminated and discussed until consensus was achieved with the larger group of investigators. RESULTS: Three main themes were identified: the importance of staff emotional support; the burden of caring for homebound patients; and the need for a broader range of home-based services. Multiple family members noted that the program not only had saved their loved one's life, but had also metaphorically saved their own. CONCLUSIONS: Family caregivers value the communication and accessibility of HBPC and report that the program has a positive impact on their stress and mental health. Results can inform key aspects that need to be retained or enhanced with the expansion in HBPC programs.


Assuntos
Cuidadores/psicologia , Serviços de Assistência Domiciliar , Atenção Primária à Saúde , Adulto , Idoso , Cuidadores/estatística & dados numéricos , Feminino , Idoso Fragilizado , Pacientes Domiciliares , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa
10.
Pflege ; 32(6): 334-342, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31640473

RESUMO

Technology commitment in outpatient care Abstract. Background: New technologies are becoming increasingly important in outpatient care. The willingness of professional carers to use new technologies is often considered to be low, especially where older and female carers are concerned who play a large role in outpatient care. However, reliable data on technology commitment in outpatient care are not yet available for German-speaking countries. AIM: This paper aims to provide insights into the state of technology commitment in outpatient care. METHODS: For data collection, the standardised assessment of technology commitment was used, which determines technology readiness via the facets "technology acceptance", "technology competence conviction" and "technology control conviction" (26-2Neyer et al., 2012). A first data collection (2013) concentrated on nursing services in the federal state of Lower Saxony (n = 263), a second data collection (2017) was carried out with a nationwide care service provider (n = 593). RESULTS: For the first time, the results of the present investigations provide differentiated insights into questions of technology commitment in outpatient care in Germany. In particular, there are indications of differences in the willingness to use technology in outpatient care depending on the age group of the interviewees. CONCLUSION: The introduction of new technologies into the everyday life of caregivers requires demographically sensitive concepts for preparing and supporting the users.


Assuntos
Assistência Ambulatorial , Atitude do Pessoal de Saúde , Tecnologia Biomédica , Cuidadores/psicologia , Alemanha , Humanos
11.
Z Gerontol Geriatr ; 52(Suppl 4): 282-290, 2019 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-31612279

RESUMO

BACKGROUND: Since 2015, the Hospice and Palliative Care Act has defined the entitlement of nursing home residents to preventive planning in the final phase of their lives. Nevertheless, the advance care planning (ACP) concept has not yet been sufficiently researched in Germany. The deficient evidence on this topic appears to be even more considerable in connection with dementia. The necessity of such a discussion increases exponentially when dementia is diagnosed, not only for the person affected but also for their relatives and other caregivers and companions. OBJECTIVE: With respect to people with dementia, documents by a prominent German ACP provider were assessed as being insufficient by the authors. The aim of the pilot study presented here was to modify a questionnaire (value anamnesis) frequently used in the national context in order to apply it to this vulnerable group. MATERIAL AND METHODS: The value anamnesis was modified in 11 steps and pre-tested on people with dementia in an early stage. The focus of the document is on attitudes towards life, death and life-prolonging measures. The modification process was carried out in an iterative process based on the grounded theory according to Strauss and Corbin. RESULTS AND CONCLUSION: The stepwise adaptation of the document has created a practicable and low-threshold approach that also enables the vulnerable group of people with dementia to comprehensively deal with existential issues and to exchange views on them. This catalogue of questions is used as a basis document for the subsequent main study: here the life attachment of people with dementia is explored and thus a new perspective is placed on ACP.


Assuntos
Planejamento Antecipado de Cuidados , Cuidadores/psicologia , Demência/terapia , Inquéritos e Questionários , Demência/psicologia , Alemanha , Humanos , Projetos Piloto
12.
Codas ; 31(4): e20180218, 2019 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-31483043

RESUMO

PURPOSE: To develop a short educational program about aphasia (SEPA) for family caregivers of people with aphasia and verify its effect in their burden and quality of life. METHODS: This is a quantitative experimental study. The participants included in the study were family caregivers of people with aphasia. They completed the Zarit interview scale and WHOQOL-Bref instruments pre- and post-intervention. The intervention was a short educational program about aphasia, administered in a group setting and conducted in two didactic sessions. RESULTS: Four participants were included in the study. In the group analysis, there was no significant difference in any measure. However, looking into the individual performances, all participants presented a trend for improvement in most of the scores. CONCLUSION: Possibly, family caregivers of people with aphasia might benefit from the SEPA. It would be relevant for future studies to include larger samples and consider new strategies to improve inclusion of participants.


Assuntos
Afasia/psicologia , Cuidadores/psicologia , Educação em Saúde/métodos , Qualidade de Vida , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Avaliação de Programas e Projetos de Saúde , Fatores Socioeconômicos
13.
Hu Li Za Zhi ; 66(5): 44-53, 2019 Oct.
Artigo em Chinês | MEDLINE | ID: mdl-31549380

RESUMO

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.


Assuntos
Cuidadores/psicologia , Assistência Domiciliar/psicologia , Cuidados Paliativos/psicologia , Comportamento de Escolha , Humanos , Pesquisa Qualitativa , Taiwan
14.
Soins ; 64(838): 25-27, 2019 Sep.
Artigo em Francês | MEDLINE | ID: mdl-31542114

RESUMO

While the benefits of support groups are proven, caregivers are still a little wary of them. There are multiple reasons for this reticence. However, wherever they take place, talking becomes freer, relationships become more fluid and cooperation is facilitated.


Assuntos
Cuidadores/psicologia , Grupos de Autoajuda , Humanos
16.
Psychiatr Danub ; 31(Suppl 3): 227-230, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31488731

RESUMO

Today, the concepts of health and illness require a global vision of man; the suffering of the person places the entire environment in great difficulty: health professionals, family, society. It is important not to simplify the response to a purely health-focused view of the disorder, because fragile people possess a deep need to feel welcomed, listened to, understood and accepted. Service provision that is respectful of the dignity of the person is an important challenge both for those who are responsible for providing services to individuals and their families as well as for the entire community. Therefore in providing care the human qualities of the health professional and not only his technical skills come into play: blending together science and humanitarian ethos. The provision of care therefore "forces" us to broaden our horizons and requires us to face the challenge of responsibility towards the Other, the human condition of being-for. However, ethical capacity cannot be born solely out of sharing standards or adhering to regulations and respecting prohibitions: it stems from high and unconditional moral values and meanings. The ME-YOU relationship represents the primary ethical factor of the human being: my responsibility towards the Other is unconditional. In the book of Genesis when the Lord asks Cain: "... where is Abel, your brother?" He responds with another question: "Am I my brother's keeper?" In this biblical passage Cain kills Abel: the rejection of brotherhood and the care of the other only leads to the death of the Other. "Where is your brother?" This question is crucial in today's day and age and must be taken seriously: it is the decisive question that forces us to decide how to place ourselves in relationship with the other and with the world: do we choose proximity or distance, connection or indifference?


Assuntos
Cuidadores/ética , Cuidadores/psicologia , Transtornos Mentais/psicologia , Princípios Morais , Comportamento Social , Saúde , Humanos , Masculino , Irmãos/psicologia , Mudança Social
17.
Psychiatr Danub ; 31(Suppl 3): 345-353, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31488751

RESUMO

BACKGROUND: Elder abuse and neglect can be defined as refusing or failing to fulfil a caregiver's obligation to meet the needs of elderly individuals in order to punish or hurt them. We aimed to explore perceptions of elder mistreatment of both caregivers and residents during long-term care, and highlight significant differences in the overall mistreatment perception regarding socio-demographic variables, as well as the type of care facility. SUBJECTS AND METHODS: The study involved 171 caregivers and 245 elderly individuals in stationary facilities. Two structured questionnaires were used - one for caregivers and the other for institutionalized elderly residents, whose initial validation concerning question and factor selection has been based upon exploratory factor analysis and discriminant validity. Parametric and nonparametric tests were employed in the statistical analysis, and statistical significance was set at p<0.05 (two-sided). RESULTS: We found significant differences in the perception of elder abuse and neglect between caregivers and elderly residents. More specifically, caregivers tend to recognize unnecessary or inappropriate medical/care procedures as indicators of elder mistreatment, while the elderly residents emphasize the removal of their personal belongings and inappropriate physical contact. According to the care facility, residents reported abuse/neglect more frequently in extended care units (21.4%), compared to the county-owned nursing home (11.4%) and private nursing home (12.1%) (p=0.001). Similarly, caregivers reported abuse/neglect more frequently in extended care units (75.4%), in comparison to county-owned nursing home (24.6%) and private nursing home (0%) (p=0.039). Shift work was also a significant predictor, as the morning nursing staff perceived abuse/neglect more frequently (p=0.011). CONCLUSIONS: This study has shown that residents and caregivers have contrasting vantage points in relation to elder abuse/neglect perception, which underlines the need for evidence-based standardization of procedures to prevent any type of elder mistreatment.


Assuntos
Cuidadores/psicologia , Maus-Tratos ao Idoso/psicologia , Assistência de Longa Duração/normas , Idoso , Maus-Tratos ao Idoso/prevenção & controle , Humanos , Assistência de Longa Duração/estatística & dados numéricos , Casas de Saúde/normas , Casas de Saúde/estatística & dados numéricos , Inquéritos e Questionários
18.
Psychiatr Danub ; 31(Suppl 3): 438-442, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31488768

RESUMO

People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.


Assuntos
Esgotamento Psicológico , Cuidadores/psicologia , Fadiga por Compaixão/psicologia , Emoções , Família/psicologia , Transtornos Mentais , Psicoterapia/métodos , Esgotamento Psicológico/prevenção & controle , Esgotamento Psicológico/terapia , Fadiga por Compaixão/prevenção & controle , Fadiga por Compaixão/terapia , Conflito (Psicologia) , Empatia , Humanos
19.
BMC Public Health ; 19(1): 1107, 2019 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-31412824

RESUMO

BACKGROUND: As the incidence and prevalence rates of end stage renal disease (ESRD) rise globally, a disproportionate increase has been observed in the elderly population. Singapore has the fifth highest incidence of treated ESRD worldwide, with the upward trend of ESRD being most apparent among those aged 70 years and older. Although it is well-documented that ESRD patients suffer an impaired quality of life compared to the general population, there is limited research focusing on the unique experiences and needs of elderly ESRD patients in Asian populations. To address the knowledge gap, this study seeks to explore the impact of ESRD and dialysis on the quality of life of elderly (≥70 years old) ESRD patients in Singapore and examine the coping strategies utilised by these patients. METHODS: This qualitative study involved semi-structured, in-depth interviews with 7 peritoneal dialysis patients, 5 haemodialysis patients, 4 patients on non-dialysis supportive care and 7 caregivers in Singapore. Interviews were conducted in English, Chinese, and Malay and fully transcribed. QSR NVivo 11 software was used for analysis. RESULTS: Participants reported that ESRD and dialysis had an impact on three highly interconnected areas of their quality of life: (a) biological/physical (general symptoms, neuromuscular problems, skin problems and poor sleep quality); (b) psychological (depressive symptoms, anxiety and fears, stress and negative self-perceptions); and (c) social (increased dependence on family and loss of social life). There were four key strategies that participants used to cope with these biopsychosocial challenges: (a) family support (financial, practical and emotional support); (b) religious/spiritual support (experiencing gratitude/contentment, the power of prayer and belonging to a faith community); (c) avoidance (cognitive avoidance and distraction techniques); and (d) acceptance (positive thinking and problem solving). CONCLUSIONS: This study has provided insights into the biopsychosocial impact of ESRD and dialysis, as well as cultural and religious factors that shape the experiences and coping mechanisms of elderly ESRD patients and caregivers in Singapore, which can be used to further the development and implementation of more holistic and person-centred services to help each patient achieve a better quality of life.


Assuntos
Adaptação Psicológica , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Diálise Renal/psicologia , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Feminino , Saúde Holística , Humanos , Masculino , Assistência Centrada no Paciente , Pesquisa Qualitativa , Qualidade de Vida , Singapura
20.
Health Qual Life Outcomes ; 17(1): 135, 2019 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-31375110

RESUMO

BACKGROUND: Quality of life (QoL) and health-related quality of life (HRQoL) measurement in low and middle-income countries of people with cerebral palsy (CP), the major cause of childhood physical disability, is essential to assess the impact of interventions and inform policies that best improve people's lives. The purpose of this study was to cross-culturally translate and psychometrically validate the Cerebral Palsy Quality of Life-Teens (CPQoL-Teens) self- and proxy-report questionnaires for application with adolescents with CP in Bangladesh. METHOD: The CPQoL-Teens questionnaires were translated to Bengali using forward and backwards cross-cultural translation protocols. The questionnaires were interviewer administered to adolescents and their primary caregivers, identified through the Bangladesh Cerebral Palsy Register. Feasibility, sensitivity, internal consistency, content, concurrent and construct validity were assessed. RESULTS: One hundred fifty four adolescents with CP (10 to 18y; mean 15y 1mo SD 1y 8mo; 31.2% female) participated. Feasibility, sensitivity and internal consistency of both self- and proxy-report questionnaires was excellent; nil missing scores except 'school wellbeing' which was associated with non-school attendance (48.4 to 74.7%); floor and ceiling effect ≤13.6%; Cronbach's alpha 0.77 to 0.94. Instrument validity was good; confirmatory factor analysis reflected five of the seven original instrument dimensions. CPQoL-Teens correlated to Kidscreen-27 on most dimensions (r = 0.176 to 0.693, p < 0.05); minimal difference in known groups was observed by mental health status (p < 0.05) although could be accounted for by homogeneity of mental health problems in the sample. CONCLUSION: The CPQoL-Teens self- and proxy report questionnaires successfully translated to Bengali and showed excellent feasibility and strong psychometric properties confirming suitability to assess indicators of HRQoL among adolescents with CP in Bangladesh.


Assuntos
Paralisia Cerebral/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Bangladesh , Cuidadores/psicologia , Criança , Pessoas com Deficiência/psicologia , Análise Fatorial , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Traduções
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