What is in the palliative care ‘syringe’? A systems perspective

Khayal, Inas S.; Barnato, Amber E.

doi:10.1016/j.socscimed.2022.115069

Cited by 9 publications

(3 citation statements)

References 34 publications

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“…Thus, the knowledge governance of palliative care has seen a continual increase in the production of policy-documents leading to policy narratives being more diverse, specialised and fragmented over time. The tension between defining what palliative care is, but meanwhile contending its complexity has been highlighted by Khayal et al [ 13 ], who found that the diffusion of palliative care in the UK has led to efforts to identify the ‘active ingredients’ of palliative care. Despite this, palliative care is often referred to as complex, due to its unpredictability and non-linear relations between professionals and the dying [ 13 ].…”

Section: Discussionmentioning

confidence: 99%

Policy Narratives on Palliative Care in Sweden 1974–2018

et al. 2023

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In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

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Section: Discussionmentioning

confidence: 99%

Policy Narratives on Palliative Care in Sweden 1974–2018

et al. 2023

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“…We drew upon stories of serious illnesses shared by care partners to identify needs arising from lived experiences. Design facilitators shadowed [ 43 ] outpatient palliative care visits and attended interdisciplinary palliative care team meetings to further understand the context of use; services provided by the care team; and the daily lives of people with serious illness, their care partners, and clinicians [ 47 ]. We developed empathy maps [ 43 ] to reflect and articulate what end users hear, see, say, do, think, and feel, and to identify points of pain and gain.…”

Section: Methodsmentioning

confidence: 99%

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

O’Donnell,

Van Citters,

Khayal

et al. 2024

JMIR Hum Factors

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Background Care partners of people with serious illness experience significant challenges and unmet needs during the patient’s treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. Objective This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. Methods An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. Results The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. Conclusions A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

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“…Os cuidados paliativos são o conjunto de práticas de assistência ao paciente incurável que visa oferecer dignidade e diminuição de sofrimento. (1)A definição de Cuidados Paliativos da OMS é a de "uma abordagem que melhora a qualidade de vida dos pacientes e suas famílias que enfrentam doenças com risco de vida, através da prevenção e alívio do sofrimento por meio de identificação precoce e avaliação e tratamento impecável da dor e outros problemas, físicos, psicossociais e espirituais" (1).…”

Section: Introductionunclassified

A influência da espiritualidade no tratamento de pacientes submetidos à cuidados paliativos: uma revisão de literatura

Carmona¹,

Araújo²,

Pereira³

2023

Braz. J. Develop.

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Introdução: Cuidados Paliativos compreendem práticas de assistência ao paciente em cuidados de final de vida visando oferecer dignidade e redução do sofrimento frente a condições adversas que os mesmos enfrentam. Espiritualidade diz respeito à busca de sentido transcendente para a vida, que pode ocorrer por religião, arte, música, natureza ou solidariedade. Diante disso, o trabalho analisou o impacto da espiritualidade no prognóstico da doença em pacientes submetidos ao paliativismo. Materiais e métodos: Revisão integrativa, de natureza qualitativa, descritiva, com as seguintes bases de dados: MEDLINE; WOS; LILACS; SCOPUS; Elsevier; EMBASE. Foram obtidos 231 artigos, com uso dos seguintes descritores: “palliative care" OR "hospice care”; Spirituality OR “Spiritual Therapies"; prognosis. Após análise, 25 artigos foram utilizados na construção da pesquisa. Resultados: 8 foram usados na introdução, 1 discutiu abordagem a pacientes críticos espiritualidade, 1 discutiu espiritualidade entre cuidadores e pacientes, 3 diziam da ausência de influência da religião no prognóstico do paciente. 10 mencionaram a necessidade de se ampliar a discussão sobre a temática por novas diretrizes de cuidado. Discussão: Os trabalhos abordaram o uso de escalas como a FACIT-Sp que avaliou capacidade de funcionalidade dos pacientes submetidos a cuidados paliativos no fim de vida no início do tratamento e 12 semanas após o tratamento espiritual. Autores realizaram estudos de intervenção comparando indivíduos que foram submetidos a terapia espiritual com indivíduos não submetidos a terapia e constatou-se que o grupo-intervenção obteve melhores índices de qualidade de fim de vida, bem-estar e menores índices de depressão. Conclusão: Os trabalhos abordaram a espiritualidade dentro de um pequeno espaço amostral. Mais estudos precisam ser realizados visando obter dados mais concretos.

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What is in the palliative care ‘syringe’? A systems perspective

Cited by 9 publications

References 34 publications

Policy Narratives on Palliative Care in Sweden 1974–2018

Policy Narratives on Palliative Care in Sweden 1974–2018

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

A influência da espiritualidade no tratamento de pacientes submetidos à cuidados paliativos: uma revisão de literatura

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