Saúde da família e cuidados paliativos infantis: ouvindo os familiares de crianças dependentes de tecnologia

Rabello, Claudia Azevedo Ferreira Guimarães; Rodrigues, Paulo Henrique de Almeida

doi:10.1590/s1413-81232010000800020

Cited by 17 publications

(24 citation statements)

References 9 publications

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“…Outros serviços, no entanto, creditam à cuidadora familiar competências e responsabilidades para as quais ela não possui a devida qualificação (11,(13)(14) .…”

Section: Discussionunclassified

Technology-dependent children: the meaning of home care – a descriptive study

2015

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RESUMOObjetivo: evidenciar fortalezas e fragilidades da família no cuidado à criança dependente de tecnologia e mudanças ocorridas após o retorno da criança ao domicílio; discutir desafios e possibilidades para a inserção familiar no processo assistencial de saúde. Método: descritivo de abordagem qualitativa, realizado com famílias de crianças doentes crônicas dependentes de tecnologia em um município do sul do Brasil.As informações obtidas foram tratadas conforme o referencial metodológico da Análise de Conteúdo, modalidade temática e o referencial teórico do Interacionismo Simbólico. Resultados: a análise dos dados convergiu em cinco categorias temáticas, as quais foram exploradas e discutidas. Conclusão: o estudo permitiu conhecer os significados atribuídos pela família à experiência de cuidar de uma criança dependente de tecnologia, identificando as fragilidades do cuidado e lacunas no apoio dos serviços de saúde.

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“…Outros serviços, no entanto, creditam à cuidadora familiar competências e responsabilidades para as quais ela não possui a devida qualificação (11,(13)(14) .…”

Section: Discussionunclassified

Technology-dependent children: the meaning of home care – a descriptive study

2015

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“…Literature, on the other hand, refers a feeling of abandonment and emotional disorders, among other aspects, caused by an interruption or reduction in the care given to the other children. 20 The participants perceive that men and women are more worried, there are more elements causing tension, a large part of their conversations is about the situation of the child/ adolescent, and about responsibilities and care. Conjugality is, therefore, affected because the "time for the husband" is reduced, and withdrawal is reinforced by frequent and often long absences of the woman, who is usually the one who accompanied the child/adolescent during hospitalizations, exams or specialist services.…”

Section: The Man X Relationship Changedmentioning

confidence: 99%

Percepção de familiares sobre estressores decorrentes das demandas de cuidado de criança e adolescente dependentes de tecnologias

Guerini¹,

Cordeiro

Osta³

et al. 2012

Texto contexto - enferm.

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This qualitative study, guided by the System Model Theory was performed with the objective to identify the perceptions that relatives taking care of technology-dependent children and adolescents have regarding the stressors that affect their relationships, as a result from the care they provide to their children. Data were collected through semi-structured interviews, and then subjected to thematic categorical analysis. Nine women of different families participated. Three categories emerged: "I live for him/her now"; "Stressful situations happen all the time"; The man x woman relationship changed. Women identified the occurrence of multidimensional, everyday changes in their family life and, particularly, in their personal life, as they practically took over the whole care alone, abandoned their job, leisure, and "being a woman". It is concluded that in order to guarantee the accomplishments made possible by technological advancement, families warrant support, particularly for the women, through policies that permit them to take care of their child and also achieve personal fulfillment in other dimensions. DESCRIPTORS:Family relations. Stress, psychological. Hospice care. PERCEPÇÃO DE FAMILIARES SOBRE ESTRESSORES DECORRENTES DAS DEMANDAS DE CUIDADO DE CRIANÇA E ADOLESCENTE DEPENDENTES DE TECNOLOGIASRESUMO: Estudo qualitativo, orientado pela Teoria do Modelo de Sistemas de Cuidado que objetivou identificar percepções de familiares sobre estressores nas suas relações, consequentes ao cuidado de crianças/adolescentes dependentes de tecnologia. Os dados foram coletados através de entrevistas semiestruturadas, e submetidos à análise categorial temática. Participaram nove mulheres de diferentes famílias. Três categorias foram evidenciadas: "Minha vida ficou em função dele(a)"; "Sempre estão acontecendo situações que estressam"; A relação homem x mulher mudou. As mulheres identificaram a instalação de mudanças multidimensionais, cotidianas, na vida de suas famílias e principalmente nas suas vidas, uma vez que assumiram quase que integralmente o cuidado, abdicaram do trabalho profissional, do lazer e de "ser mulher". Conclui-se que para garantir as conquistas possibilitadas pelo avanço tecnológico é necessário apoiar a família, especialmente a mulher, com políticas que permitam a ela cuidar da criança/adolescente e realizar-se em outras dimensões. DESCRITORES:Relações familiares. Estresse psicológico. Cuidados paliativos. LA PERCEPCIÓN DE LOS FAMILIARES SOBRE LOS FACTORES DE ESTRÉS COMO CONSECUENCIA DEL CUIDADO A NIÑOS Y ADOLESCENTES DEPENDIENTES DE TECNOLOGÍA RESUMEN:Es un estudio cualitativo, exploratorio y descriptivo, basado en la teoría del modelo de sistemas de cuidado, con el objetivo de identificar la percepción de los familiares sobre los factores de estrés en sus relaciones, como consecuencia del cuidado a niños y adolescentes dependientes de tecnología. Los datos se recolectaron a través de entrevistas semiestructuradas, sometidas al análisis de categorías temáticas. Nueve mujeres de diferentes fami...

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“…Thus, technologies for interventions in chronic-degenerative disease processes can transform the final phase of life into a long and painful process of dying (1) a moment in which patients and their families need a healthcare approach which focuses on the quality of life and of death.…”

Section: Palliative Care: Challenges For the Health Systems Regina Apmentioning

confidence: 99%

Palliative Care: challenges for the health systems

Lima

2011

Rev. Latino-Am. Enfermagem

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Reflections on the development of technologies in the health area have been accompanied by issues related to the finiteness and quality of life, because if technology can provide a cure for an illness, it can also prolong life, often without considering its quality. Thus, technologies for interventions in chronic-degenerative disease processes can transform the final phase of life into a long and painful process of dying(1) a moment in which patients and their families need a healthcare approach which focuses on the quality of life and of death.Palliative care is constituted in a modality of healthcare that meets this reality to minimize the suffering caused by the diseases and by the technological interventions. According to the World Health Organization, palliative care consists of measures that improve the quality of life of patients facing a terminal illness and their families by preventing and relieving suffering through early identification, correct evaluation and treatment of the pain and other physical, psychosocial and spiritual problems (2) .A World Health Organization document entitled Better palliative care for older people, reaffirms and justifies the need to include palliative care as part of the integral healthcare, in all chronic diseases and especially in the elderly care programs. In this document, the education of the teams and of the general population is emphasized regarding the principles and benefits of palliative care.Studies on global estimates of palliative care treatment have identified that 115 countries maintain one or more palliative care services and that 60% of the 56 million people who die each year have benefited from some form of palliative care. Although there is a worldwide expansion of this care modality, we are still faced with more than 20 million people dying without access to care that seeks to alleviate the suffering and the disease symptoms, to preserve the autonomy of the patient and their right of participation, and to provide a better quality of life (4) .The finding that a large number of people still do not receive adequate care in their death process makes us think about the need to expand the coverage of these services. This is not the only challenge for the health systems, since the production of this care has as its basis human and scientific competence. In this sense, the production and dissemination of knowledge on this thematic is vital for the elaboration of the best practices in palliative care. References

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Saúde da família e cuidados paliativos infantis: ouvindo os familiares de crianças dependentes de tecnologia

Abstract: Saúde da Família e cuidados paliativos infantis: ouvindo os familiares de crianças dependentes de tecnologia

Cited by 17 publications

References 9 publications

Technology-dependent children: the meaning of home care – a descriptive study

Technology-dependent children: the meaning of home care – a descriptive study

Percepção de familiares sobre estressores decorrentes das demandas de cuidado de criança e adolescente dependentes de tecnologias

Palliative Care: challenges for the health systems

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