Indicadores de capacidade de cuidar, em famílias de doentes oncológicos paliativos

O objectivo do presente trabalho foi avaliar os factores que influenciam a capacidade da família para cuidar de um doente oncológico, em Cuidados Paliativos. Tratou-se de um estudo transversal, qualitativo, observacional, assente na Grouded Theory, recorrendo à técnica de Focus Group (FG), realizado entre 01/2009 a 08/2009. Recrutaram-se para os 2 FG, familiares de pessoas que possuíam doença oncológica, incurável, progressiva, que eram acompanhados pelo Serviço de Cuidados Paliativos do Instituto Português de Oncologia do Porto (IPO Porto). Todos os elementos familiares estavam directa ou indirectamente, implicados nos cuidados ao doente oncológico paliativo. Da análise dos encontros (FG), foram identificadas 4 eixos que comportam factores (categorias) condicionantes à capacidade para cuidar: Eixo da Pratica (Internamento, ajudas técnicas, recursos sociais/saúde, cuidados paliativos, apoio psicológico, deslocação, despesas no domicilio); Eixo Relacional (vínculos, perda, privacidade, intimidade, apoio ao cuidador, partilha); Eixo da Experiência Interna (sentimentos, estratégias de coping, afecto, sofrimento, morte, apoio psicológico); Eixo do Estado de Saúde (recuperação, sintomas, Informação sobre a doença, vulnerabilidade do cuidador). A lista/grelha de indicadores identificados pode ser útil na avaliação holística da família permitindo detectar precocemente características que ponham em risco a sua capacidade de cuidar, condicionando a continuidade dos cuidados e/ou uma possível alta.The goal of this report is to assess the factors that can influence the capacity of a family to take care of an oncologic patient in Palliative Care. It is a broad, qualitative and observational study, backed by the Grounded Theory and using the Focus Group (FG) techniques and it took place between January and August 2009. For this investigation we brought together relatives of patients of the Portuguese Institute of Oncology of Oporto (IPO Porto) that were affected by an incurable and progressive oncologic illness. All elements were directly or indirectly connected to the caring of the palliative oncologic patient. By analyzing the FG meetings we can identify four axis that carry factors (categories) that may condition the capacity to take care: The Practical Axis (Internment, technical aid, social/health resources, palliative care, psychological support, relocation, house expenses) The Relational Axis (bonds, loss, privacy, intimacy, support to the caregiver, sharing) The Internal Experience Axis (feelings, coping strategies, affection, suffering, death, psychological support) The Health Condition Axis (recovering, symptoms, information about the illness, vulnerability of the caregiver). A list of the identified indicators is of help in the holistic evaluation of the family by enabling an early detection of traits that may be a risk to their caring capacity, conditioning the continuity of the palliative care and/or a possible discharge

Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability

Symptom prevalence of patients with fibrotic interstitial lung disease: A systematic literature review

© 2018 The Author(s). Background: Those affected by advanced fibrotic interstitial lung diseases have limited treatment options and in the terminal stages, the focus of care is on symptom management. However, quantitatively, little is known about symptom prevalence. We aimed to determine the prevalence of symptoms in Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD). Methods: Searches on eight electronic databases including MEDLINE for clinical studies between 1966 and 2015 where the target population was adults with PIF-ILD and for whom the prevalence of symptoms had been calculated. Results: A total of 4086 titles were screened for eligibility criteria; 23 studies were included for analysis. The highest prevalence was that for breathlessness (54-98%) and cough (59-100%) followed by heartburn (25-65%) and depression (10-49%). The heterogeneity of studies limited their comparability, but many of the symptoms present in patients with other end-stage disease were also seen in PIF-ILD. Conclusions: This is the first quantitative review of symptoms in people with Progressive Idiopathic Fibrotic Interstitial Lung Diseases. Symptoms are common, often multiple and have a comparable prevalence to those experienced in other advanced diseases. Quantification of these data provides valuable information to inform the allocation of resources

Palliative care professionals’ message to others: an ethnographic approach

Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both implicit and explicit, that palliative care professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of palliative care professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behavior and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that palliative care professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate the myths, misunderstandings, and lack of a positive reputation for palliative car

Development of an instrument to assess the capacity for families to provide home care: content validation process

RESUMO - Em cuidados paliativos (CP) é essencial apostar no bem-estar. O objetivo deste estudo é apresentar o processo de construção e validação de conteúdo da escala de capacidade para cuidar em paliativos (ECCP). Criou-se uma lista de 58 itens que foi avaliada por profissionais e por um grupo de cuidadores em CP, com recurso à técnica de índice de validade de conteúdo e à técnica pensar alto, respetivamente. O pré-teste obteve concordância de variáveis em 47 itens, sendo que nenhum obteve valor < 3. Os resultados mostram que o instrumento é dotado de validade de conteúdo, consistente e suscetível de ser aplicado à população alvo.ABSTRACT - In palliative care it is important to promote the wellbeing. The aim of this study is to present the creation/validation process of the scale for Capacity to Care in Palliative Care (ECCP). 58 items were created and then discussed and measured by a group of experts and caregivers of PC, using the Content Validity Index and Cognitive Debriefing techniques. The peer-test reached an agreement on 47 items, none of which obtained a value < 3. This study shows that the instrument is endowed with content validity, which allows us to conclude that it is a consistent instrument liable to be applied to the target population.info:eu-repo/semantics/publishedVersio

O suporte à família em cuidados paliativos = Family support in palliative care

Não faz sentido falar de cuidados paliativos sem referenciar uma equipa multidisciplinar e interdisciplinar que comporta diferentes profissionais, de diferentes áreas, que apoiem o doente e a família (TWYCROSS, 2003). Este é o desafio que o artigo apresenta, o de poder passar a visão psicossocial que envolve o mundo do doente paliativo e suas famílias, onde os cuidados de saúde considerados ativos estão centrados na dolência do ser humano. Pretende-se aqui contribuir para o conhecimento sobre as famílias no contexto de doença terminal recorrendo à investigação efetuada nesta área sistêmica e ao conhecimento empírico, enquanto investigadores e profissionais no trabalho diário com doentes e famílias em intenso sofrimento

Understanding illnesses through a film festival: an observational study

Audio-visual materials play a fundamental role in the context of education, care and clinical treatment, as they seem to have a high impact on public awareness. This study aims to describe what messages are perceived by the society at an International Festival of Short Films and Art on Diseases that may help to understand difficult topics, such as illness, dying and suffering. Through an observational, descriptive, cross-sectional study, using full participant observation and an open, self-administered questionnaire, 32 short films were analysed during a healthcare art festival. Categories were developed using inductive content analysis. The message perceived by the participants, after the viewing of the shorts and reflection of the debates among the attendees, were considered in four categories: i) creative and positive education is possible; ii) awareness of preconception and practical duties; iii) meaning of life changes the experience of illness; iv) family and caregivers also experienced suffering. The short films are considered as an excellent tool to generate social dialogue and debate. Public events can be understood as an opportunity to ac- quire, in an emotional and critical manner, other competencies for public awareness. Together, they are capable of communicating difficult messages through a fast, positive, and creative way