The Illness Experience: Palliative Care Given the impossibility of Healing

Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

doi:10.1590/s0080-623420160000300007

Cited by 9 publications

(13 citation statements)

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“…Other studies have explored how unnecessary therapeutic efforts to prolong life can often be detrimental to the dignity and well-being of patients. 36 37 …”

Section: Discussionmentioning

confidence: 99%

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Nair¹,

Kumar

Mahajan³

et al. 2020

BMJ Open

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ObjectivesThis study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.DesignThis was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.SettingAll interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.ParticipantsWe purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.ResultsCritically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.ConclusionsDespite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences.

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“…Other studies have explored how unnecessary therapeutic efforts to prolong life can often be detrimental to the dignity and well-being of patients. 36 37 …”

Section: Discussionmentioning

confidence: 99%

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Nair¹,

Kumar

Mahajan³

et al. 2020

BMJ Open

View full text Add to dashboard Cite

show abstract

“…Durante o adoecimento grave, quando a cura já não é mais possível, a pessoa adoecida pode desenvolver uma aversão ao poder familiar e ao tratamento terapêutico (2) . Isso não aconteceu com Estrela, pois para ela a dor e o sofrimento provocados pelo adoecimento possibilitaram sua reaproximação da mãe e dos demais familiares, o que resultou em relacionamento mais prazeroso e saudável.…”

Section: Constelação Do Cuidado Familiar: Experiência De Uma Vida Envunclassified

“…Cienc Cuid Saude 2018 Abr-Jun 17 (2) No caso de Estrela, houve-se necessidade de muitos rearranjos para que o cuidado familiar fosse posto em prática. Isso envolveu diversas dimensões, tais como: os constantes deslocamentos de uma cidade pra outra (Fig.…”

Section: Constelação Do Cuidado Familiar: Experiência De Uma Vida Envunclassified

“…En este recorrido, el cuidado fue ofrecido, generalmente de forma creciente, por los amigos y por las instituciones religiosas. Pero, los profesionales y las instituciones de salud, cuando la cura dejó de ser posible, se Cienc Cuid Saude 2018 Abr-Jun 17 (2) alejaron progresivamente de la familia. Propusimos reflexiones acerca del valor del cuidado familiar y de cómo él es modelado, permitiendo comprensión y aproximación por parte de la enfermería para una práctica de cuidado que pone atención a las necesidades de la persona enferma, incluyendo y reforzando los potenciales de la familia.…”

Section: Experiencia De La Enfermedad Por Cáncer De Una Joven Y La Counclassified

“…Adentrar o universo das pessoas que adoecem gravemente e por longo período de tempo é compreender de forma alargada suas próprias perspectivas, o que fornece elementos para entender que o curso do adoecimento não é linear e estanque, mas ancora-se em um fluxo constante de mudanças, significações, adaptações e ressignificados (1) . A priori, consideramos o adoecimento como algo singular e personalíssimo, que não se descola da vida e das relações 'das e entre' as pessoas, mas se amalgama ao próprio viver, no ritmo mesmo das necessidades do cotidiano (2) .…”

Section: Introductionunclassified

See 2 more Smart Citations

<b>Experiência do adoecimento por câncer de uma jovem e a constelação do cuidado familiar/ Experience of a young woman’s cancer and the family care constellation<b>

Bezerra¹,

Souza²,

Souza³

et al. 2018

Cienc. Cuid. Saúde

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Objetivamos compreender o movimento do cuidado tecido pela família frente ao adoecimento por câncer de uma jovem e como esse cuidado ocorreu segundo o envolvimento familiar, profissional e institucional. Optamos pela abordagem compreensiva, pelo estudo de situação e pela história de vida que foi operacionalizada pela entrevista em profundidade e observação. Realizamos a análise por meio de leituras e reflexões/discussões no âmbito do grupo de pesquisa com elaboração de desenhos sintetizadores. Nesse processo, as narrativas se aglutinaram em torno do tema “cuidado familiar” originando a imagem da “Constelação do Cuidado”. O estudo mostrou que a família se articulou, em movimento sinergético, para modelar o cuidado e, mesmo estando imersa em vulnerabilidade, consegui encontrar forças ao utilizar o potencial de cada ente familiar no cuidado. Nesse percurso, o cuidado foi ofertado, geralmente de forma crescente, pelos amigos e pelas instituições religiosas. Todavia, os profissionais e as instituições de saúde, quando a cura deixou de ser possível, se distanciaram progressivamente da família. Propomos reflexões acerca do valor do cuidado familiar e de como ele é modelado, permitindo compreensão e aproximação por parte da enfermagem para uma prática de cuidado que atenda às necessidades da pessoa adoecida, incluindo e reforçando os potenciais da família.

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“All of a sudden, a lot less still makes it worthwhile to be alive:” Palliative care patients’ views on life

et al. 2018

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Data were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients. Result Eighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41-80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD. Significance of results Results support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

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The Illness Experience: Palliative Care Given the impossibility of Healing

Cited by 9 publications

References 1 publication

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

<b>Experiência do adoecimento por câncer de uma jovem e a constelação do cuidado familiar/ Experience of a young woman’s cancer and the family care constellation<b>

“All of a sudden, a lot less still makes it worthwhile to be alive:” Palliative care patients’ views on life

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