Comparison Between Home and Hospital as the Place of Death for Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness

Ushikubo, Mitsuko

doi:10.1177/1049909114525259

Cited by 11 publications

(24 citation statements)

References 33 publications

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“…O enfermeiro tem como funções: estabelecer um plano de cuidados que abranjam as necessidades do paciente e da família [21,30,20], comunicar todas as informações sobre a doença e opções relacionadas ao tratamento ao paciente [9,25,14,30,20], avaliar a capacidade de comunicação do paciente e estar familiarizado com as ferramentas que podem auxiliá-lo [14,20,18], avaliar as necessidades emocionais [14,20], monitorar a condição do paciente, rastrear o aparecimento de novo sintomas [9,21,20,29], antecipar o encaminhamento a outros profissionais [19,18], informar os recursos sociais disponíveis [9,14,21,29], educar os prestadores de cuidado, implementar as recomendações da equipe multidisciplinar, avaliar se o diagnóstico da ELA está correto e reforçar os conceitos do diagnóstico enquanto administra os cuidados [18].…”

Section: Atribuições Da Enfermagemunclassified

“…Estes profissionais devem fornecer apoio emocional ao paciente [14,21,29,20], família e cuidadores [21], manter uma comunicação efetiva para que as necessidades presentes e futuras sejam atendidas e que todos participem ativamente do tratamento, além de preparar a família para a morte em tempo hábil [21,30].…”

Section: Atribuições Da Enfermagemunclassified

“…As discussões sobre os tratamentos desejados no fim da vida beneficiam os pacientes e seus parentes [9]. O paciente e sua família devem estar cientes de todos os sintomas e suas opções de gerenciamento, para que possam tomar decisões durante todo o processo de planejamento de cuidados [30,18].…”

Section: Suporte Familiarunclassified

“…Independente do tipo de escolha sobre o futuro, se deseja morte natural ou se deseja viver com ventilação por pressão positiva por traqueostomia, o profissional de saúde precisa cuidar do paciente e de seus parentes. A comunicação entre pacientes, família e prestadores de cuidado é a saída para melhorar a apoio à tomada de decisão entre o paciente e seus parentes, para que os desejos do paciente sejam respeitados e a família se prepare para a morte [30].…”

Section: Suporte Familiarunclassified

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O cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica: uma revisão integrativa

Omena¹,

Brandão²,

Albuquerque³

et al. 2019

Enferm Bras

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Objetivo:Conhecer a produção referente ao cuidado de enfermagem ao portador Objetivo: Conhecer a produção referente ao cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica. Métodos: Trata-se de uma revisão integrativa nas bases de dados Pubmed, Medline, Lilacs, Scielo e BDEnf. Os critérios de inclusão foram: periódicos indexados com textos disponíveis na íntegra, nos idiomas: português, inglês, espanhol, publicados no período de 2006 a 2016, e que apresentaram informações relevantes a questão norteadora da pesquisa. Foram excluídos estudo de revisão integrativa, revisão de literatura, e teses ou dissertações. Resultados: Os principais conteúdos que emergiram da amostra final (n=20) foram: atribuições da enfermagem, manejo de sintomas específicos, modelos de cuidado, dificuldades no cuidado, questões éticas, necessidades existenciais e estratégias de enfrentamento e suporte familiar. Conclusão: A análise revelou que a enfermagem é primordial no tratamento desse paciente e precisa investir em pesquisas que abranjam o envolvimento dos familiares, os sentimentos do paciente e formas de comunicação.Palavras-chave: enfermagem, esclerose amiotrófica lateral, assistência.

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Section: Atribuições Da Enfermagemunclassified

Section: Suporte Familiarunclassified

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O cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica: uma revisão integrativa

Omena¹,

Brandão²,

Albuquerque³

et al. 2019

Enferm Bras

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“…Many care recipients prefer to be treated at home (Higginson, Sarmento, Calanzani, Benalia, & Gomes, 2012), and technological progress allows more serious conditions (Fex et al, 2011), such as ALS (Enck, 2013;Ushikubo, 2014), chronic heart failure (Fergenbaum, Birmingham, Krahn, Alter, & Demers, 2015;Öhlén, Forsberg, & Broberger, 2013) or kidney failure, to be treated at home (Vestman, Hasselroth, & Berglund, 2014). However, the wish to stay at home might weaken towards end of life (Asbjoern Neergard et al, 2011;Gerrard et al, 2011); yet, with the diminishing number of hospital beds (Socialstyrelsen, 2008), the possibility of being admitted to hospital if the need occurs is decreasing.…”

Section: Patients and Families In Home Health Carementioning

confidence: 99%

Documentation of Nursing Care in Advanced Home Care

Öhlén

Forsberg

Broberger

2013

Home Health Care Management & Practice

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The overall aim of this thesis was to explore nursing care within Advanced home care (AHC) through nursing documentation and nurses' perceptions of nursing care, in order to delineate the required nursing competencies Background Home health care has increased significantly, in Europe, North America and other parts of the world. Many care recipients prefer to be treated at home and technical developments makes it possible to treat even severe sickness in the home environment. However, this also affects nursing care, and setting high demands on nurses. Methods In study 1 nurses from four different AHC units were interviewed. In study 2 nursing records were collected from two different AHC units and nursing interventions were detected and described. Content analysis was used in both studies. A synthesis of both studies was conducted for this thesis. Findings Study 1 comprises 2 domains; planned care and acute care. In study 2 three teams emerged; no ordinary day, daily joys and challenges and providing safe and secure care Synthesis of the 2 studies were sorted into four themes; contents of nursing care within AHC, nurse's perception of nursing care, nursing documentation within AHC and nursing competencies needed within AHC. Nursing care Within AHC was either planned or acute. Contents of nursing care was e.g. interventions, including intravenous infusions, blood transfusions and high technology utilization Other common nursing interventions were sampling, dressing and bandaging, administration of nutritional products and administration of pharmaceuticals. Contents of nursing care also included information and education. Nurses' perceived nursing care within AHC was that this was joyful, free, rewarding and challenging; they respected patients' autonomy and appreciated patients' families. Nurses found team work essential. However, work was performed mostly alone and they encountered situations where they felt insecure. Nurses' documentation was perceived as essential for patient safety. However, documentation was often fragmented, frequently lacked evaluation and information was hard to find. Most of the nurses interviewed lacked a specialist education but had long experience from nursing. Apart from personal qualities and maturity, nurses expressed competencies needed as high technology, pathophysiology, acute care, documentation and retrieving evidence based practice. Conclusion There are no ordinary days within AHC and nurses perceive nursing care within AHC as joyful but challenging. To provide safe and secure care nurses need advanced knowledge and skills in advanced nursing comprising pathophysiology, high technology, medical techniques, pain and pain relief, psychology and communication. Furthermore, nurses need to appreciate PCC and FPCC. Documentation of nursing care In AHC was often fragmented and information hard to find. This could be a threat to patient safety and accurate nursing records have to be a priority. Least but not last nurses need to develop their knowledge in information techniques in order...

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What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

et al. 2023

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Introduction/AimsHealth communication is central to effective, supportive amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited, focuses on diagnosis disclosure, and frequently relies on expert consensus and/or reviews. Patient‐based evidence is needed to guide ALS health communication. We investigated how the experiences of ALS patients and family caregivers can inform effective communication practices from diagnosis to end‐of‐life.MethodsData were drawn from the ALS Talk Project, an asynchronous, online focus group study. Seven focus groups and five interviews (105 participants) were conducted. Data were qualitatively analyzed using directed content analysis and the constant‐comparative approach.ResultsWe found four primary themes: communication content, communication circumstances, information sufficiency, and communication manner. Data indicate participants relied on clinicians for medical information but also wanted practical information; health communication should attend to the circumstances within which conversations occur; information must be sufficient for individual needs, without overwhelming; and an empathetic, direct, and honest manner facilitated trust. Participants identified communication challenges and strategies to improve communication across major themes, including stepwise approaches and conversations tailored to individuals and their heterogeneous disease experiences.DiscussionHealthcare professionals should discuss patient/caregiver communication preferences early in the therapeutic relationship, co‐develop a communication agreement, and update the agreement in response to changing needs and disease progression. This will foster regular discussion of information needs and promote timely discussions of challenging topics, including advance care, while giving patients and families a sense of control. Findings may have implications for other neuromuscular disease and/or seriously ill populations.

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Comparison Between Home and Hospital as the Place of Death for Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness

Abstract: Providing family education and ensuring the availability of local family physicians are vital to meeting a patient's desire to die at home. Home care nursing should be introduced in the early stage after diagnosis to provide support to patients for timely decision-making.

Cited by 11 publications

References 33 publications

O cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica: uma revisão integrativa

O cuidado de enfermagem ao portador de Esclerose Lateral Amiotrófica: uma revisão integrativa

Documentation of Nursing Care in Advanced Home Care

What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

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