Educational innovation as a communication strategy in palliative care: A study protocol and preliminary results.

INTRODUCTION: Society associates palliative care with "death" or "end of life", which cause them fear and anxiety. In Spain, the media worsens the misunderstanding by depicting a wrong picture of palliative care. Educational innovation for university students may serve as an alternative communication strategy. Care and Society is a university course designed by and for students from non-health degrees to help disseminate the palliative care message. The first year of the Teach-Inn Pal project aims to evaluate the effects of the course and to identify areas of improvement. OBJECTIVE: To present an evaluation to determine if the course can work as a campaign to refocus the public opinion on palliative care and share the preliminary results of the pilot study. METHODOLOGY: A prospective Participatory Action Research study. University students enrolled in the course (n = 29) are invited to test and redesign the palliative care message. Knowledge and empathy will be measured throughout the learning process. Afterwards, qualitative, thematic, inductive analysis of the course material will be carried out. This study is registered on the ISRCTN Registry under the name "Can a university course help communicate palliative care?" (Registration number: ISRCTN10236642). DISCUSSION: This study is part of a doctoral thesis. Education is used as a creative outlet, allowing rapid testing of multiple tools to create ambassadors of palliative care that may reframe the public opinion. CONCLUSION: The understanding of students about palliative care changed, the overall impression of the experience was positive, and students were also able to explain palliative care to people with little or no experience in the topic. However, to determine if they became ambassadors the results of the mid-term assessment are required.

The impact of COVID-19 on palliative care social work: An online survey by a European Association of Palliative Care Task Force.

BACKGROUND: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. AIM: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. DESIGN: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. SETTING/PARTICIPANTS: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. RESULTS: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families. CONCLUSIONS: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion.

Palliative care stay room - designing, testing and evaluating a gamified social intervention to enhance palliative care awareness.

INTRODUCTION: The message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy. AIM: Design, test and evaluate a gamified social intervention to enhance palliative care awareness among young university students from non-health background. METHODS: Participatory action research study with mixed methods, Design Thinking and using the Public Engagement strategy. Forty-three undergraduate students participated in a Palliative Care Stay Room and completed the Test of Cognitive and Affective Empathy (TECA) before and after the game. At the end of the game, a ten-minute debriefing was held with the participants, which was concluded with an open conversation. The content analysis was done independently and the sum of the scores of each dimension was compared before and after the activity. FINDINGS: The Stay Room improved the participants' knowledge and new perspectives about palliative care. Before the game, their views focused on the end of life and after the game on their values, highlighting the dedication of the healthcare professionals who do not treat death but the life until death. After de game, participants (N = 43: female = 23; male = 20; x̄ 19.6 years old) presented higher values in perspective adoption (intellectual ability to put oneself in the other's place) p = 0.046 and in emotional understanding (ability to recognize emotional states) p = 0.018, and had high scores on empathic joy (p = 0.08). CONCLUSION: Gamification can be used in teaching and transmitting positive attitudes. Palliative Care and can help young university students to think positively about care issues.

Interdisciplinary discussions on palliative care among university students in Spain: giving voice to the social debate.

BACKGROUND: University students are the future professionals who will influence society. It is thus essential to improve students' understanding of palliative care (PC), especially those in the non-health field, to generate and encourage propitious opinions about PC. This study describes the perceptions of PC among university students from different disciplines. METHOD: Qualitative exploratory study using virtual focus groups (FGs) and design thinking (DT) approach. An intentional sample of students from various disciplines, universities and cities from Spain were selected. Numerous researchers from different fields were involved in the discussion of the final thematic analysis. RESULTS: Four themes and seven subthemes were found: i) Students have an ambiguous understanding about PC; ii) PC is not a common issue for non-health students; ii) Students see PC as an important and necessary field; iii) Students build counter-narratives against PC myths, demonstrating PC brings key benefits into people's lives; iv) PC is a synonym of death. CONCLUSION: Despite the fact that students do not know much about PC, the topic easily arouses reflection and positive discussion. Through the conversations they find positive values and arguments against misunderstand- ing. Students from different disciplines could be the target of innovative educational initia- tives and the social debate on PC.

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 care.

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.

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.

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 acquire, 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.

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

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.

Psychometric validation of the needs assessment tool: progressive disease in interstitial lung disease.

The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated.

The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease.

BACKGROUND: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. OBJECTIVE: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. METHODS: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group-academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. RESULTS: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. CONCLUSIONS: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.

Capacidades familiares para cuidar de enfermos oncológicos paliativos: un estudio cualitativo / The ability of family members to care palliative cancer patients: A qualitative study

El objetivo de este estudio fue evaluar los factores que pueden influir en la capacidad de que dispone una familia para cuidar de un paciente oncológico que requiere cuidados paliativos. Se trata de un estudio amplio, cualitativo y de observación, respaldado por la Teoría Fundamentada (Grounded Theory) y el uso de la técnica de grupos focales. En el periodo de enero a agosto de 2009 reunimos a 13 familiares de pacientes con enfermedad oncológica incurable y progresiva que estaban siendo atendidos por un servicio de cuidados paliativos de un hospital oncológico situado en el norte de Portugal, separados por 2 grupos focales distintos. Mediante el análisis de lo transcrito del grupo focal se identificaron 4 ejes que aportan factores (categorías), que pueden condicionar la capacidad de cuidar: el eje práctico (ingreso, asistencia técnica, recursos sociales/salud, cuidados paliativos, apoyo psicológico, traslado, gastos de la casa); el eje relacional (los vínculos, la pérdida, la privacidad, la intimidad, el apoyo al cuidador, compartir), el eje de experiencia interna (sentimientos, estrategias de afrontamiento, afecto, sufrimiento, muerte, apoyo psicológico), y la condición del eje de la salud (la recuperación, los síntomas, la información sobre la enfermedad, la vulnerabilidad del cuidador). La construcción de los indicadores identificados en la investigación pueden resultar muy útiles para detectar en una evaluación integral a la familia factores que pueden poner en riesgo la capacidad del grupo familiar para atender al paciente y asegurar la continuidad del manejo por Cuidados Paliativos

The aim of this study is to assess the factors that can influence the capability of a family to take care of an oncology patient in Palliative Care. It is a broad, qualitative and observational study, backed by the Grounded Theory and using the Focus Group technique. Meetings, separated into 2 focal groups, were held in the period from January to August 2009, with 13 relatives of patients with incurable cancer and progressive disease, who were being cared for in a Palliative Care Unit of an oncology hospital in northern Portugal. By analyzing the focal groups transcripts, 4 axes that carry factors (categories) that may condition the ability to be a caregiver could be identified: The practical axis (admission, technical assistance, social/health resources, palliative care, psychological support, relocation, home 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), and 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 of risk to their caring capacity, determining the continuity of the palliative care and/or a possible discharge

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.

It makes no sense to talk about palliative care without referencing a multidisciplinary and interdisciplinary team approach comprising different professionals from different fields, supporting the patient and family (TWYCROSS, 2003). This is our challenge: the challenge to study the psychosocial world of palliative patients and their families, where health care are considered active and centered on the human being. We intend in this paper to contribute to the knowledge of the families in the context of terminal illness using the systemic research done in this area and our empirical knowledge, while researchers and practitioners in their daily work with patients and families in higher distress.