Emotional experiences in palliative care and professional quality of life: a qualitative approach.

Objective: To explore the experiences that significantly impact the professional quality of life of people providing palliative care (PC) in Ecuador. Design: Observational cross-sectional qualitative research. Methods: In September 2022, 10 focus groups were carried out in four cities in Ecuador; each group lasted from 1 to 2 h, was audio recorded, and transcribed verbatim. Recruitment was conducted through convenience sampling, and a total of 71 individuals (15 students, 50 professionals, and 6 volunteers) linked to PC participated. Content analysis with a phenomenological and inductive approach was used to analyze the data. Results: People recognized their experiences in PC as having positive and negative impacts on their professional quality of life. Experiences were mapped as affecting them at individual, relational, and contextual levels. These experiences included personal growth, opportunity to provide care, teamwork, death-related issues, inability to deal with work-related stress, social acceptance of PC, and dealing with inefficient health systems, among others. Conclusion: Despite the positive emotions that arise with caring for others, individuals working and volunteering in PC experience situations that influence their professional quality of life. Addressing these factors to increase satisfaction and ease the burden of PC work is essential. Undergraduate education, continuous professional training, and PC teams should incorporate actions to address these factors at all levels, such as teaching coping skills, fostering social support, and increasing awareness of PC.

How experiences shape professional quality of life in palliative care This study explored how working in palliative care impacts the professional quality of life of people providing palliative care in Ecuador. The research team conducted 10 focus groups in four cities in Ecuador with 71 participants. The results show that people's experiences impact their professional quality of life in positive and negative ways. These experiences also affect people at individual, relational, and contextual levels. This study has identified common experiences that should be addressed to increase satisfaction and ease the burden of working in palliative care. These should be considered in undergraduate education, continuous professional training, and within palliative care teams.

Exploring critical factors in pediatric palliative care in Latin America: A scoping review.

This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a comprehensive search for peer-reviewed articles related to pediatric palliative care in Latin America, considering both review and empirical articles published in English, Portuguese, or Spanish within the last decade. Our review initially identified 30 publications, which were subjected to a full-text assessment. The majority of these articles originated from Brazil, Mexico, and Chile, highlighting a regional concentration of research efforts. Notably, we observed a scarcity of comprehensive research and specific studies on pediatric palliative care in Latin America. Our findings revealed significant challenges, including resource limitations, the absence of dedicated policies, and the critical need for interdisciplinary teams to address the multifaceted aspects of pediatric palliative care. In light of our review, we emphasise the necessity for more extensive and representative research efforts, as well as the continuous updating of scientific evidence in the field of pediatric palliative care within the Latin American context. The recommendations derived from this review aim to contribute to the enhancement of pediatric palliative care services and accessibility throughout Latin America.

"Our focus is on illness and loneliness": Volunteer work engagement, compassion satisfaction, compassion fatigue, self-care and motivations to volunteer.

They are participating as a volunteer implies active personal positioning accompanying others. Evidence supports that experiences of those who experience an illness, who are hospitalised or feel lonely, impact the volunteers: positive emotions like engagement and Compassion Satisfaction (CS) or, the reverse, Compassion Fatigue (CF). Motivations help us understand why volunteers spend their time on these activities. And self-care practices will be a challenge to counteract the exhausting emotions of volunteering. This research presents a mixed, exploratory and sequential design study on the island of Majorca (Spain). The first phase (n = 216) was quantitative, gathering data from November 2018 to April 2019. Then, the second phase (two focus groups) started with qualitative data collection (July 2019). Firstly, the study determines CS and work engagement levels and examines the relationship between self-care, CF and motivations. Secondly, the study finds out how they recognise their positive and negative emotions, their relationship with self-care and what motivates them to be volunteers. The results show that the volunteers report highly positive feelings associated with their volunteering (CS and engagement) and are backed up by a good level of personal Self-Care. The Understanding and Enhancement motivational functions generate even more positive feelings for the volunteers themselves, who attach a positive value to their experience of caring for others. Despite the positive results collected, we must not ignore the phenomenon of CF in relational volunteering and pain support because it occurs. After all, that could lead to abandonment by volunteers.

Relationship between parental mental health and developmental disorders in early childhood.

Social intervention with children with disabilities and their families should be understood through the principles of family-centred practice. In Spain, early intervention is understood as interventions aimed at children from 0 to 6 years old and their families. Professionals carry out the reception, assessment and intervention. This study aims to analyse the relationship between mental and physical health, caregivers' levels of anxiety and depression and the child's development during the fostering and assessment phase. The sample is made up of 135 families using child development centres in the Balearic Islands. Four questionnaires were completed: Health-Related Quality of Life SF-12, Anxiety and Depression Scale, Child Behaviour Checklist (CBCL 1½-5) and socio-demographic questionnaire. The results show that parents of children with disabilities have higher levels of mental health impairment than physical health impairment. They also score higher on anxiety than on depression. It is worth noting that professional discipline is a variable to be taken into account in relation to parents' perception of their child's developmental improvement. In addition, the association between the developmental subscales, where the more the child is affected, the more the parents' mental health is affected. The same pattern occurs with caregivers' levels of anxiety and depression. In short, we propose a reflection on the application of family-centred practices during interventions, understanding the lack of professional training as a predictor of the quality of early intervention.

Educación Inclusiva y Pedagogía Hospitalaria: las Actitudes Docentes Promotoras de la Inclusión / Inclusive education and hospitality Pedagogy: Teaching Skills that Promote Inclusion

RESUMEN: La Educación Inclusiva defende la equidad, la igualdad de oportunidades y el acceso a la educación para todos y todas. En el ámbito de la Pedagogía Hospitalaria (PH) es necesario contar con profesionales comprometidos, competentes que apuesten por los principios inclusivos. En este sentido, el docente es la pieza clave para llevar a cabo los postulados inclusivos a la realidad diaria del aula. Por ende, el presente estudio tiene como objetivo analizar las investigaciones empíricas que relacionen la Educación Inclusiva, la PH, la autoestima docente y la motivación docente. A partir de una revisión sistematizada de la literatura, se han analizado 32 artículos. Los resultados muestran que la autoestima y la motivación docente se relacionan directamente con las prácticas educativas inclusivas en el ámbito escolar, domiciliario y del aula hospitalaria. Además, la autoestima y la motivación del alumnado dependen de la del profesorado y, por consiguiente, el proceso de enseñanza-aprendizaje se ve condicionado por las características y las actitudes docentes.

RESUMO: A Educação Inclusiva defende a equidade, a igualdade de oportunidades e o acesso à educação para todos. No campo da Pedagogia Hospitalar (PH) é necessário ter profssionais empenhados, competentes e comprometidos com princípios inclusivos. Nesse sentido, o professor é a chave para realizar os postulados inclusivos para a realidade quotidiana da sala de aula. Portanto, o presente estudo visa analisar a investigação empírica que relaciona educação inclusiva, PH, autoestima dos profesores e motivação dos professores. A partir de uma revisão sistematizada da literatura, foram analisados 32 artigos. Os resultados mostram que a autoestima e a motivação dos professores estão diretamente relacionadas a práticas educativas inclusivas na escola, em casa e na sala de aula do hospital. Além disso, a autoestima e a motivação dos estudantes dependem dos professores e, consequentemente, o processo ensino-aprendizagem é condicionado pelas características e atitudes dos professores.

ABSTRACT: Inclusive Education stands for equity, equal opportunities and access to education for all. In the field of Hospital Pedagogy (HP) it is necessary to have competent professionals who are committed to inclusive principles. In this sense, the teacher is the key to carrying out inclusive postulates in the daily reality of the classroom. Terefore, this study aims to analyse empirical research that relates Inclusive Education, H P, teacher self-esteem and teacher motivation. Based on a systematised review of the literature, 32 articles have been analysed. The results show that teacher self-esteem and motivation are directly related to inclusive educational practices in the school, home and hospital classroom environments. Moreover, students' self-esteem and motivation depend on that of the teachers and, therefore, the teaching-learning process is conditioned by teachers' characteristics and attitudes.

Self-Perception of Quality of Life and Emotional Well-Being among Students Attending Hospital Classrooms during COVID-19 Pandemic.

The COVID-19 pandemic caused disruptions in schooling and the closure of schools worldwide, how this has affected children's and youth's health and wellbeing is a current area of research. However, those who suffer a chronic or temporary disease may be attending hospital classrooms, and this scenario has received little attention in comparison to regular schools. The objective of this exploratory quantitative study focuses on exploring the quality of life and emotional well-being of students attending hospital classrooms. For this purpose, four Chilean hospital classrooms from different regions of the country were randomly selected. A total number of 248 students participated in the survey, each of whom filled out two online questionnaires. The findings show similar scores in children with mental illness and those with other health conditions. In comparison with one year before, students rate their general health as the same or somewhat better now, as well as manifesting an optimistic view of the future regarding the pandemic.

The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases.

Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.

Satisfaction and Quality of Life of Families Participating in Two Different Early Intervention Models in the Same Context: A Mixed Methods Study.

Early intervention is developed following different types of service organization, which in turn require different professional and family roles. The aim of this study was to compare the perceived satisfaction and family quality of life amongst families receiving early intervention developed at centers in comparison to those receiving the routines-based early intervention in families' homes, that is a family centered intervention in ecological environments. Under a transformative paradigm, a mixed methods design was used, using the Consumer Report Effectiveness Scale (CRES-4) and the Beach Center Family Quality of Life Scale (FQOLS) and two focus groups as data collection instruments. The sample comprised 166 parents in the quantitative phase and 16 parents in the qualitative phase. Results showed that families receiving routines-based early intervention had greater satisfaction with the service although both groups showed similar scores for family quality of life in most of the analyzed domains. Three dimensions were identified throughout the qualitative phase: problem solving, professional team and service organization. Both the models analyzed have an impact on family quality of life and parents are in general satisfied. Strengths and weaknesses were found related to the problem-solving process, the role of the professional team, family empowerment and the service's organization. The areas requiring further development are the effective training of professionals focused on family practices, the exchange of information with the family and a more participatory organization that takes parent's perspectives into consideration. The value given to a combined model is another aspect highlighted in this study, as well as the need for a more agile assessment period to avoid unnecessary delays.

Influence of schooling on the health-related quality of life of children with rare diseases.

BACKGROUND: Although participation of children with rare diseases in school is considered beneficial, it poses new challenges for the educational system, but also for the affected children and their families. The aim of this study is to identify which aspects of the schooling experience may have an impact on the health-related quality of life of children with rare diseases. METHOD: A qualitative study was conducted using the social-critical paradigm as theoretical perspective. Participants (n = 28) included children with rare diseases (n = 8), parents (n = 12) and school staff (n = 8). Data was obtained through in-depth interviews and focus groups and analysed through discourse analysis as methodological orientation. RESULTS: Participants' discourses placed value on the social benefits of inclusion of children with rare diseases in schooling. Discourses also highlighted how the low numbers of children with rare diseases and the delay, or lack, of a clear diagnosis are among the difficulties experienced in the pursuit of the adaptations that children and teachers need to promote a healthy and normalized school experience. The issues identified in their health-related quality of life were summarized in seven categories: Attendance, Knowledge, Participation, Acceptance, Discrimination, Safety, Health-Related Support. CONCLUSION: Children with rare diseases remain, in many cases, invisible at the educational level due to the low numbers of children affected, limiting the kind of resources available to the child and teaching staff. This situation requires inter-disciplinary and inter-sector measures between health services and educational environments to articulate a comprehensive approach focused on children's clinical needs.

[Needs of psychopedagogical training for the care of children with chronic disease: perceptions of hospital nursing]. / Necesidades de formación psicopedagógica para la atención de niños con enfermedad crónica: percepciones de enfermería hospitalaria.

OBJECTIVE: To identify the psychopedagogical training needs of the pediatric nurses in the largest public hospital of the Balearic Islands, Spain. METHOD: This study was developed with a quantitative and qualitative design, where 78 nurses (97.5% of the service) answered a questionnaire, and 15 participated in interviews that were analyzed via content analysis. RESULTS: The quantitative results show gaps in the knowledge and psychopedagogical skills of the staff. These aspects could facilitate the development of tasks tailored to the personality and the psychoevolutional time of children with chronic diseases, as well as to the emotional state of families. The qualitative data was organized into four categories: family support; hospital and education; psychopedagogical training and difficulties in practice. The little communication between nurses and teachers is evident. CONCLUSION: The data reinforces the need to implement training strategies and interdisciplinary work among health professionals, educators and families.

Needs of psychopedagogical training for the care of children with chronic disease: perceptions of hospital nursing / Necesidades de formación psicopedagógica para la atención de niños con enfermedad crónica: percepciones de enfermería hospitalaria / Necesidades de formación psicopedagógica para la atención de niños con enfermedad crónica: percepciones de enfermería hospitalaria

OBJECTIVE To identify the psychopedagogical training needs of the pediatric nurses in the largest public hospital of the Balearic Islands, Spain. METHOD This study was developed with a quantitative and qualitative design, where 78 nurses (97.5% of the service) answered a questionnaire, and 15 participated in interviews that were analyzed via content analysis. RESULTS The quantitative results show gaps in the knowledge and psychopedagogical skills of the staff. These aspects could facilitate the development of tasks tailored to the personality and the psychoevolutional time of children with chronic diseases, as well as to the emotional state of families. The qualitative data was organized into four categories: family support; hospital and education; psychopedagogical training and difficulties in practice. The little communication between nurses and teachers is evident. CONCLUSION The data reinforces the need to implement training strategies and interdisciplinary work among health professionals, educators and families. .

OBJETIVO Identificar as necessidades formativas psicopedagógicas entre enfermeiros de pediatria do maior hospital público das Ilhas Baleares, Espanha. MÉTODO Trata-se de uma pesquisa quali-quantitativa, na qual 78 enfermeiros (97,5% do serviço) responderam a um questionário e 15 participaram de entrevistas examinadas por meio da análise de conteúdo. RESULTADOS Os resultados quantitativos mostram lacunas no conhecimento e nas competências psicopedagógicas do pessoal, embora estes aspectos possam facilitar o desenvolvimento de tarefas adaptadas à personalidade e ao momento psicoevolutivo da criança com doença crônica, além do estado emocional das famílias. Os resultados qualitativos foram organizados em quatro categorias: apoio familiar, hospital e educação, formação psicopedagógica e dificuldades na prática. Destaca-se a pouca comunicação entre enfermeiros e professores. CONCLUSÃO Os dados reforçam a necessidade de implementar estratégias de formação, assim como um trabalho interdisciplinar entre profissionais de saúde, educadores e famílias. .

OBJETIVO Identificar las necesidades formativas psicopedagógicas en enfermeras de pediatría del mayor hospital público en las Islas Baleares, España. MÉTODO Se trata de un diseño cuanti-cualitativo, donde 78 enfermeras (97,5% del servicio) contestaron un cuestionario y 15 participaron en entrevistas analizadas con análisis de contenido. RESULTADOS Los resultados cuantitativos muestran lagunas en conocimientos y competencias psicopedagógicas del personal, aunque estos aspectos podrían facilitar el desarrollo de tareas adaptadas a la personalidad y momento psicoevolutivo del niño con enfermedad crónica y el estado emocional de las familias. Los resultados cualitativos fueron organizados en cuatro categorías: apoyo familiar; hospital y la educación; formación psicopedagógica y dificultades en la práctica. Destaca la poca comunicación entre enfermeras y profesores. CONCLUSIÓN Estos datos refuerzan la necesidad de implementar estrategias de formación y un trabajo interdisciplinario entre profesionales de la salud, educadores y familias. .