How palliative care professionals develop coping competence through their career: A grounded theory.

BACKGROUND: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career. AIM: To develop an explanatory model of coping for palliative care professionals throughout their professional career. DESIGN: A grounded theory study. Two researchers conducted constant comparative analysis of interviews. SETTING/PARTICIPANTS: Palliative care nurses and physicians across nine services from Spain and Portugal (n = 21). Theoretical sampling included professionals who had not continued working in palliative care. RESULTS: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one's own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one's own limitations. Fifth: grounding care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed sometimes can be reversed because the professional has come to understand how to care for themselves. CONCLUSIONS: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work.

Processo de cuidados entre cuidador informal e doente com necessidades paliativas no domicílio: Metassíntese / The care process between informal caregivers and patients with palliative care needs at home: Meta-synthesis / Proceso de atención entre el cuidador informal y el paciente con necesidades paliativas en el domicilio: metasíntesis

Resumo Introdução: O cuidador informal e o doente com necessidades paliativas são fundamentais no sucesso dos cuidados no domicílio, porém pouco se sabe sobre o cuidado que decorre entre os dois. Objetivos: Identificar os fatores que influenciam o cuidado entre o cuidador informal e o doente com necessidades paliativas no domicílio. Metodologia: Metassíntese seguindo a metodologia Joanna Briggs Institute. Incluíram-se estudos qualitativos com a perspetiva de cuidadores informais e/ou doentes com necessidades paliativas no domicílio. Pesquisa nas bases MEDLINE, CINHAL, Embase e Scopus (2009-2021). Resultados: Incluíram-se 30 estudos com 605 participantes. Surgiram oito temas centrais: fatores facilitadores/ dificultadores dos cuidados informais; estratégias utilizadas; a influência do tempo e da progressão da doença nos cuidados; as motivações para cuidar em casa; as aprendizagens contínuas e as funções do cuidador. Conclusão: O cuidado informal é um processo dinâmico onde se interligam fatores facilitadores/dificultadores, estratégias e a progressão da doença. Os resultados permitem compreender a experiência de cuidar e estruturar cuidados centrados na pessoa, flexíveis e adaptados ao contexto.

Abstract Introduction: Informal caregivers and patients with palliative care needs are essential for a successful home-based care experience. However, little is known about the care process between informal caregivers and these patients. Objective: To identify the factors that influence the care process between informal caregivers and patients with palliative care needs at home. Methodology: Meta-synthesis following the Joanna Briggs Institute methodology. We included qualitative studies with informal caregivers and/or patients with palliative care needs at home. We searched MEDLINE, CINHAL, Embase, and Scopus databases (2009-2021). Results: Thirty studies were included, with 605 participants. Eight main themes emerged: facilitating factors of informal care; complicating factors of informal care; strategies used; the influence of time in care; the influence of disease progression in care; motivations to provide home-based care; continuous learning; and caregiver's roles. Conclusion: Informal care is a dynamic process where facilitating/complicating factors, strategies, and disease progression are interconnected. The results contribute to understanding the care process and designing person-centered, flexible, and context-sensitive care plans.

Resumen Introducción: El cuidador informal y el paciente con necesidades paliativas son fundamentales para el éxito de los cuidados a domicilio, pero se sabe poco sobre la atención que se presta entre ambos. Objetivos: Identificar los factores que influyen en la atención entre el cuidador informal y el paciente con necesidades paliativas en el domicilio. Metodología: Metasíntesis siguiendo la metodología Joanna Briggs Institute. Se incluyeron estudios cualitativos con la perspectiva de cuidadores informales y/o pacientes con necesidades paliativas en el domicilio. Búsqueda en las bases MEDLINE, CINHAL, Embase y Scopus (2009-2021). Resultados: Se incluyeron 30 estudios con 605 participantes. Surgieron ocho temas centrales: factores que facilitan / dificultan los cuidados informales; estrategias utilizadas; influencia del tiempo y de la progresión de la enfermedad en los cuidados; motivaciones para cuidar en casa; aprendizaje continuo y funciones del cuidador. Conclusión: Los cuidados informales son un proceso dinámico en el que se incluyen factores que facilitan / dificultan, estrategias y progresión de la enfermedad. Los resultados permiten comprender la experiencia de cuidar y estructurar unos cuidados centrados en la persona, flexibles y adaptados al contexto.

Adaptation and continuous learning: integrative review of coping strategies of palliative care professionals.

BACKGROUND: Coping is essential to manage palliative care professionals' challenges. The focus has been on the effects of coping mechanism; however, little is known about coping itself in palliative care. AIM: To synthesise evidence of coping strategies in palliative care professionals, and how different strategies play roles over time. DESIGN: Systematically conducted integrative review. DATA SOURCES: PubMed; CINAHL; Medline; PsycINFO and B-ON were searched (1996-2021) combining 'coping' AND 'palliative care'. A predefined data extraction sheet was developed to report data. Two researchers performed constant comparative analysis using Nvivo®. RESULTS: Thirty-one studies were included. Four main strategies with recurrent reference to time were found: (a) proactive coping, involving activities to achieve self-confidence and control situations and emotions; (b) self-care based coping, including self-protection and self-awareness activities, with behavioural disconnection; (c) self-transformation coping, involving activities to accept limits; and (d) encountering deep professional meaning, is a coping mechanism based on meaning, frequently considering the deepest meaning of work. The dynamic and influencing factors were training, team interaction, professional motivation and family. They were usually protective factors, though sometimes they represented risk factors. The emotional burden associated with healthcare and systemic stressors were always risk factors. An explanatory model describes a complex and dynamic process, in which everyday strategies and more introspective strategies are combined. CONCLUSIONS: The model showed a process of adaptation and learning to persevere in palliative care. It changes over time under factors and strategies, and evolves in a personal and professional transformation, parallel to the working life. It would be worth assessing coping in healthcare professionals who chose to leave palliative care and to investigate the reasons they did so and their coping mechanisms.

Insight and Inner Peace in Palliative Care Professionals after an Art Therapy Workshop Focused on Personal Self-Care: A Preliminary Experience.

Background: Emotional exhaustion is a problem many palliative care (PC) professionals face during their activity. Art therapy is emotionally beneficial for palliative patients who experience suffering, but its impact on professionals' experience of suffering has not been researched. Objective: To examine the immediate reactions of professionals after an art therapy workshop focused on personal self-care, also considering previously used coping strategies. Design: A four-hour art therapy workshop was designed including a generic qualitative study of participants. Participants were PC professionals and their reactions were examined using an ad hoc questionnaire with open-ended questions. Descriptive analysis of quantitative variables and thematic analysis of open-ended questions were conducted. Results: Seventeen professionals participated voluntarily. They rated the workshop positively, using words such as "calm" and "relaxation" to express the effects of the workshop, which they considered therapeutic and a source of self-awareness. For some, it allowed them to release emotions; for others, it enabled introspection and opened up a more elaborated emotional response. They thought artistic expression would be useful for their colleagues, or even for their own personal development. In the workshop, professionals opened up and explained how they face intense moments on a day-to-day basis: how they approach the situation, or how they try to control their surroundings; how they disconnect/distance themselves; and how they consider circumstances as a learning process and source of self-nurturing. Participants described art therapy as calming, healing the most intense feelings, and feeding the soul. Conclusion: Professionals reacted immediately with enthusiasm to art therapy, positively assessing its effects. Some attributed effects are in line with daily strategies of connecting with one's inner self. Others are about promoting self-awareness and inner peace, while providing healing opportunities. Art therapy may play a role in self-care for the PC professional, and should be researched further. Research Ethics Committee of the Universidad de Navarra approved the study (Number: 2019.167).

The value of the ethnographic approach to research issues in palliative care.

PURPOSE OF REVIEW: Qualitative research in the field of palliative care allows for a crucial study of the final stage of life from a social point of view and cultural perspective. This review evaluates the advantages and challenges of applying an ethnographic approach to palliative care research. RECENT FINDINGS: Thirteen ethnographic articles on organization or quality of care, decision-making, delirium, death, and the process of dying, were reviewed. Most studies use interviews, participant observation, and field notes as their primary data collection techniques. In ethnographic research, cultural issues, relationships and interactions of a group, the meanings and perceptions of the participants, the communication process, and the use of language in a particular and natural context were analyzed. Data collection and information analysis took an average of 14 months in the included studies. SUMMARY: The ethnographic method, applied with rigor, is valuable in the analysis of a real phenomenon if the particular context in which the study developed is well defined. With an ethnographic approach, researchers can uncover cultural nuances that evidence different realities.

Conceito de dignidade na enfermagem: análise teórica da ética do cuidado / The concept of dignity in nursing care: a theoretical analysis of the ethics of care / Concepto de dignidad en la enfermería: un análisis teórico de la ética del cuidado

Resumo Atualmente sabe-se que resultados positivos em saúde derivam de fatores como valorização e respeito, participação nas decisões, autoestima positiva e capacidade de exercer controle sobre a própria vida, indicando que a percepção do paciente sobre a própria dignidade é elemento central do cuidado. Trata-se de conceito complexo, difícil de definir por falta de clareza quanto ao que implica, mas fundamental na enfermagem. Este artigo apresenta revisão de literatura com o objetivo de discutir aspectos da dignidade no contexto da ética do cuidado.

Abstract We know today that positive health outcomes derive from the intersection of various factors such as valuation and respect; involvement in decisions, positive self-esteem, and the ability to exercise control over one's own life by pointing out that the individual's perspective on dignity is a central element in high-quality care. Dignity is a complex concept, difficult to define for lack of clarity of what the concept implies, but it is fundamental in Nursing courses. This theoretical article intends to present the narrative review about the concept of dignity in Nursing care, carried out in the context of the PhD in Nursing, at Universidade de Lisboa (University of Lisbon), aiming to discuss aspects of dignity in the context of Nursing care ethics.

Resumen Actualmente se sabe que los resultados positivos en salud derivan de factores como la valoración y el respeto; la participación en las decisiones, la autoestima positiva y la capacidad para ejercer control sobre la propia vida, señalando que la percepción del paciente sobre la propia dignidad es un elemento central del cuidado. Se trata de un concepto complejo, difícil de definir, por la falta de claridad respecto de lo que implica, pero fundamental en enfermería. Este artículo presenta una revisión de la literatura con el objetivo de discutir aspectos de la dignidad en el contexto de la ética del cuidado.

Protecção social da velhice em Portugal. O caso particular dos lares de idosos / Social protection of old age in Portugal. The particular case of nursing homes / La protección social de la vejez en Portugal. El caso particular de los hogares de personas mayores

A política de cuidados na velhice está relacionada com as alterações sociodemográficas, transformações na estrutura e dinâmica familiar, a individualização das relações sociais, centradas na autonomia e na independência. Estas alterações proporcionam uma "desproteção" aos idosos, associada a outros riscos, designadamente à maior probabilidade de doenças crónicas e incapacitantes, à necessidade de cuidados, num tempo de escassez dos cuidadores familiares disponíveis, à maior probabilidade de rendimento insuficiente, ao baixo nível de escolaridade e acesso deficitário à informação, associado a níveis escassos de participação social. Este artigo pretende apresentar uma revisão acerca da protecção social da Velhice em Portugal, realizada durante a investigação acerca da Promoção e Preservação da Dignidade em Lares de Idosos, realizada no contexto do Doutoramento em Enfermagem da Universidade de Lisboa, Portugal, concluído em novembro 2017.

The policy of care in old age is related to sociodemographic changes, transformations in family structure and dynamics, the individualization of social relations, centered on autonomy and independence. These changes provide an "unprotection" to the elderly, associated with other risks, namely the greater probability of chronic and incapacitating diseases, the need for care, in a time of shortage of available family caregivers, the greater probability of insufficient income, low level of schooling and lack of access to information, associated to scarce levels of social participation. This article intends to present the reflection about old age as a social problem, carried out during the research on the Promotion and Preservation of Dignity in the context of care in nursing homes, carried out in the context of the PhD in Nursing of the University of Lisbon.

La política de cuidados en la vejez está relacionada con las alteraciones sociodemográficas, transformaciones en la estructura y dinámica familiar, la individualización de las relaciones sociales, centradas en la autonomía y la independencia. Estas enmiendas proporcionan una "desprotección" a las personas mayores, asociada a otros riesgos, en particular a la mayor probabilidad de enfermedades crónicas e incapacitantes, a la necesidad de cuidados, en un tiempo de escasez de los cuidadores familiares disponibles, a la mayor probabilidad de rendimiento insuficiente, al bajo nivel de ingresos, escolaridad y acceso deficitario a la información, asociado a niveles escasos de participación social. Este artículo tiene como objetivo presentar una revisión de la protección social de la ancianidad en Portugal, que tuvo lugar durante la investigación de la preservación de la promoción y la dignidad en residencias de ancianos, que tuvo lugar en el marco del Doctorado en Enfermería de la Universidad de Lisboa, Portugal, terminado en noviembre de 2017.

Construção Social do Envelhecimento Individual / Social Construction of Individual Aging / Construcción Social del Envejecimiento Individual

Segundo a WHO (2002), as sociedades estão a envelhecer, sendo possível observar uma transformação demográfica sem precedentes na história da humanidade. O sucesso das transformações sociais, ao acolherem o envelhecimento saudável, é proporcional à precariedade dos mecanismos que dispomos para lidar com a velhice frágil e dependente. É um facto que se acrescentou mais anos de vida à população em geral; contudo, a inexorabilidade da velhice só poderá ser evitada se houver uma morte prematura. Para muitos idosos, os últimos anos de vida são devastados pela doença crónica, deficiência ou demência, e dependência maior. Do ponto de vista histórico da humanidade, somos uma sucessão de gerações, cada vez mais velhas, amparadas pela ilusão da renovação. O passado foi mais jovem que o presente, e o futuro terá ainda mais idade. Este artigo pretende apresentar a reflexão acerca do envelhecimento individual, realizada durante a investigação acerca da Promoção e Preservação da Dignidade no contexto de cuidados em lares de idosos, realizada no contexto do Doutoramento em Enfermagem da Universidade de Lisboa, Portugal.

According to WHO (2002), societies are aging, and it is possible to observe an unprecedented demographic transformation in the history of humanity. The success of social transformations in welcoming healthy aging is proportional to the precariousness of the mechanisms we have to deal with fragile and dependent old age. It is a fact that we added years of life to the general population, however, the inexorability of old age can only be avoided if there is a premature death. For many the last years of life are devastated by chronic illness, disability or dementia, and increased dependence. From the historical point of view of humanity, we are a succession of generations, increasingly old, supported by the illusion of renewal. The past was younger than the present and the future will be even older. This article intends to present a reflection about the social construction of individual aging, carried out during the research on the Promotion and Preservation of Dignity in the context of care in nursing homes, in the context of the PhD in Nursing of the University of Lisbon, Portugal.

Según la OMS (2002), las sociedades están envejeciendo, siendo posible observar una transformación demográfica sin precedentes en la historia de la humanidad. El éxito de las transformaciones sociales, al acoger el envejecimiento sano, es proporcional a la precariedad de los mecanismos que disponemos para lidiar con la vejez frágil y dependiente. Es un hecho que se han añadido más años de vida a la población en general; Sin embargo, la inexorabilidad de la vejez sólo puede evitarse si hay una muerte prematura. Para muchos ancianos, los últimos años de vida son devastados por la enfermedad crónica, la discapacidad o la demencia, y la dependencia mayor. Desde el punto de vista histórico de la humanidad, somos una sucesión de generaciones, cada vez más viejas, amparadas por la ilusión de la renovación. El pasado fue más joven que el presente, y el futuro tendrá aún más edad. Este artículo pretende presentar la reflexión sobre el envejecimiento individual, realizada durante la investigación acerca de la Promoción y Preservación de la Dignidad en el contexto de cuidados en hogares de ancianos, realizada en el contexto del Doctorado en Enfermería de la Universidad de Lisboa, Portugal.

[Xerostomia in palliative care]. / Xerostomia em cuidados paliativos.

Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life.