scholarly journals FAMILY NEEDS OF INCURABLE ILL CHILDREN IN THE CONTEXT OF SPECIAL EDUCATION

2019 ◽  
Vol 7 ◽  
Author(s):  
Kristína Nagyová ◽  
Terézia Harčaríková

Incurable disease of children is one of the most difficult periods in the life of a family. The family must adapt to the new challenges that bring the illness and everything adapts to the needs of the child. However, we often don´t realize and even don´t know that the family needs must also be fulfilled. The paper presents partial results of the research aimed at identifying the needs of the family with an incurable ill child in a special pedagogical context. For the collection of research data a semi-structured interview with assistants working in the area of child palliative care was conducted. The obtained data were processed by qualitative analysis. The results point to the necessity of a transdisciplinary approach to children with incurable illness and their families – psychologist, social worker, clergymen, and special educator.

2015 ◽  
Vol 36 (2) ◽  
pp. 56-62 ◽  
Author(s):  
Adriana Ferreira da Silva ◽  
Helena Becker Issi ◽  
Maria da Graça Corso da Motta ◽  
Daisy Zanchi de Abreu Botene

OBJECTIVE: To reveal the perceptions, expertise and practices of multi-professional teams providing palliative care to children in a paediatric oncology unit. The research questions were based on everyday care, facilitations and difficulties, essential aspects of professional approaches, and the inter-disciplinary focus of care for children in palliative care and their families. METHOD: Qualitative, exploratory and descriptive research. Data were collected from June to October 2013 from nine professional multidisciplinary team members by means of a semi-structured interview submitted to thematic analysis. RESULTS: The following four themes emerged from analysis: palliative care: conceptions of the multi-professional team; the construction of singular care; the facilitations and difficulties experienced by the team and significant lessons learned. CONCLUSIONS: The subjects revealed that the team also suffers with the death of a child and, like the family, moves toward the construction of coping mechanisms for the elaboration of mourning. Paradoxically, the team shares knowledge to determine the foundations of a singular therapeutic project and inserts the family in this process so that it can be the protagonist of the child's care.


2014 ◽  
Vol 2014 ◽  
pp. 1-4
Author(s):  
G. Foreva ◽  
R. Asenova ◽  
M. Semerdjieva

In Bulgaria, the patient is entitled to palliative care in case of incurable disease with an unfavourable prognosis. Palliative care is provided by the family doctor/GP and institutions. Literature on palliative care providing is scarce. The objective of the study was to investigate the opinion of general practitioners, medical students, and other medical specialists working in institutions on palliative care. Method. We have developed a structured questionnaire. Descriptive statistics have been calculated for all items. Differences between groups have been compared using u-criterion. Level of significance was P<0.05. Data has been analyzed using SPSS v. 16. Results. A total of 518 respondents completed the survey. Lack of appropriate organisation and financing has been pointed out by all participants. The GP’s role in palliative care providing has been described as a contradictory one. The criteria on the basis of which the patients are eligible for palliative care have been arranged in the same way by all respondents, but GPs chose the longest temporal indicator. Quality assessment has not been applied. 2/3 of respondents demanded palliative care training. Conclusion. On the whole, the investigated groups differed to some extent in their opinion on palliative care both on conceptual and practical levels.


2013 ◽  
Vol 4 (1) ◽  
pp. 54-57
Author(s):  
Larissa Cinara Brunnquell Pires ◽  
Mara Ambrosina De Oliveira Vargas ◽  
Rosmari Wittmann Vieira ◽  
Flávia Regina Souza Ramos ◽  
Sílvia Ferrazzo ◽  
...  

Pesquisa qualitativa, cujos objetivos são analisar a relação entre equipe de enfermagem e familiar de pacientes internados num Núcleo de Cuidados Paliativos (NCP), na perspectiva dos familiares e identificar o entendimento destes sobre o acolhimento como uma das atividades desenvolvidas pela equipe de enfermagem. Dados coletados mediante entrevista semiestruturada com treze familiares de pacientes adultos internados no NCP e analisados por Análise Temática. Identificou-se a contribuição da equipe de enfermagem ao proporcionar qualidade às pessoas com doença terminal e minimizar o sofrimento vivenciado pelo familiar. Apoio, atenção e afeto são marcas definidoras da relação e do acolhimento da equipe.Descritores: Cuidados Paliativos, Família, Equipe de Enfermagem, Cuidado Terminal.Relation between the nursing team and family of people under palliative careA qualitative research, which aims to analyze the relation between the nursing team and family of inpatients being treated in a Palliative Care Center (NCP), in the perspective of their relatives and identify their understanding on the welcoming as one of the activities developed by the nursing team. The data were collected through semi-structured interview with thirteen relatives of adult inpatients being treaded at a NCP and analyzed by Theme Analysis. The contribution of the nursing team by providing quality to people with terminal disease and minimizing the suffering experienced by the family was identified. Support, care, and kindness are determinant factors in the welcoming by and relationship of the team.Descriptors: Palliative care, Family, Nursing Team, Terminal Care.Relación entre equipo de enfermería y familia de personas en cuidados paliativosInvestigación cualitativa, cuyos objetivos son los de analizar la relación entre el equipo de enfermería y familiar de pacientes internados en un Núcleo de Cuidados Paliativos (NCP), en la perspectiva de los familiares e identificar el entendimiento de éstos sobre el acogimiento como una de las actividades desarrolladas por el equipo de enfermería. Datos colectados mediante entrevista semiestructurada con trece familiares de pacientes adultos internados en el NCP y analizados por Análisis Temático. Se identificó la contribución del equipo de enfermería al proporcionar calidad a las personas con enfermedades terminales y minimizar el sufrimiento vivido por el familiar. Apoyo, atención y afecto son marcas definidoras de la relación y del acogimiento del equipo.Descriptores: Cuidados Paliativos, Familia, Equipo de Enfermería, Cuidado Terminal.


2021 ◽  
pp. 47-52
Author(s):  
Liudmyla Matviyets ◽  
Larysa Matіukha ◽  
Oleksandra Bratsyunʹ

Anxieties, depression, fear, depressive disorders are symptoms, which may be the part of physiological feeling with incurable disease, especially when the diagnosis is informed. Sometimes, the assumption of difficult news, related to worsening of health and even risk to life can lead to fatal consequences. For family physicians and other professionals, who are involved in palliative care, it is important to be able to diagnose the worsening of patients’ psycho-emotional state in time, in order to provide professional psychological support. In this article, the results of research of level of difficulty of depressive disorders in palliative patients depending on different demographic and social data are presented, which can be modified with changing attitudes towards these patients (when ensuring correct communication and managing of the palliative patient by the family physician). The research has shown that socio-demographic indicators significantly affect the forming of state of depression in palliative patients, and require appropriate communication between the family physician and the patient, and the organization of additional measures for managing these patients. Special attention should be given to some results of research when providing palliative care, in particular: depression of different level of difficulty, based on the PHQ-9 scale was found in 81 % of palliative patients; it was set that 90 % of people, aged of 75–90 years had depression of different level of difficulty; it was determined that all patients with high income had depression, among them 16.7 % of light and 58.3 % of moderate level of difficulty, that can be considered as a neurotic reaction of incurable disease. Depression was found in all unmarried patients, among them 35 % of light and 35 % of moderate level of difficulty, and 30 % of patients with high level as well, that significantly predominate over the number of married people (4.1 %) and widows 14 %), that may indicate character traits, which complicate the adaptation of behavioral reactions on stress factors , including to the disease. Depression was found in all unmarried patients, among them 35 % of light and 35 % of moderate level of difficulty, and 30 % of patients with high level as well, that significantly predominate over the number of married people (4.1 %) and widows 14 %), that may indicate character traits, which complicate the adaptation of behavioral reactions on stress factors, including to the disease. Such patients need additional psychological support for reducing their suffering, in particular for preventing of mental genesis pains. According to the indicators of various socio-demographic parameters, the portrait of the most vulnerable palliative patients was determined: they are women of age group 75–89 years, living in the city, by civil state – single (additional depressive factor can be assumed – long-term loneliness), by social status – pensioners with Higher Education and high income, based on a scale of PHQ-9 >20 points, that corresponds to the diagnosis: depressive syndome of heavy level.


2022 ◽  
Vol 43 ◽  
Author(s):  
Beatriz Helena Naddaf Camilo ◽  
Taynnara Caroline Serafim ◽  
Natália Rejane Salim ◽  
Álida Maria de Oliveira Andreato ◽  
Júlia Rudzinski Roveri ◽  
...  

ABSTRACT Objectives: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. Methods: Study with a descriptive qualitative approach, in which 17 professionals participated. Data were collected through a semi-structured interview script, from December/2018 to February/2019, and submitted to content analysis. Results: Four theoretical categories emerged, with 11 subcategories inserted: meanings attributed to bad news; nursing as a support for the family; difficulties in dealing with the process of communicating bad news; nursing and involvement with the family’s suffering. Final considerations: The challenges to deal with the situation are related to lack of preparation, impotence, and subjectivities. The results broaden knowledge on the subject and enable the improvement of nursing care in this context.


2016 ◽  
Vol 4 ◽  
pp. 676-682
Author(s):  
Kristína Nagyová ◽  
Terézia Harčaríková

The issue of incurable diseases, today, represents a relatively current and urgent topic because, despite the development of medicine and comprehensive care for individuals with an incurable disease, there is a continual increase in the number of such diseases associated with secondary problems that have a crucial bearing on the quality of life for the individuals and their family in both a broader and narrower context. An important role in the comprehensive care of individuals with an incurable disease is special education, because in addition to education it deals with the stigma attached to the care and education of families with a child with an incurable disease. The paper presents the partial results of research focused on the problems of individuals with oncological disease in the context of special education. Research data were obtained by a variety of methods, where the most crucial were the semi-structured interview method and the method of narration. These methods were applied on individuals with oncological disease who had been diagnosed with cancer during the time of schooling. The obtained data were processed by qualitative analysis. The results indicate that this issue requires greater consideration.


Author(s):  
Hardianti Abubakar ◽  
Yolanda MTN Apituley ◽  
Lilian M. Soukotta

As a form of diversified processed fish meat, tuna meatball is very popular to people in Ambon. This type of food is sold by traders from Java by walking or cycling. Difficulties living in the origin area require traders to leave their families and go out looking for jobs in other areas with hopes that the family needs are met. The purpose of this research is to analyze (1). Characteristics of mobile tuna meatball traders in Ambon, (2). The amount of income received by mobile tuna meatball traders in Ambon, and (3). Percentage income utilized by the mobile tuna meatball traders either in family or personal needs. The study was conducted by survey and data obtained through interviews and observations from May to October 2018. The results show that the average age of meatball traders was between <25-65 yo, having education in junior and senior high school level, with the highest number of dependants 1-2 people and <5 years trading experience. The average income of tuna fish meatball traders is Rp. 4,747,231, - which is used for personal and family needs. Seven  traders use more than 50% for family needs and the rest for personal needs, while six traders utilize more than 60 % for personal needs and the rest for family needs.


2015 ◽  
Vol 1 (1) ◽  
pp. 13
Author(s):  
Putu Sucita Yanthy ◽  
Luh Gede Leli Kusuma Dewi ◽  
W. Citra Juwitasari

Bali is one of spa tourist destinations having various categories of spas and spa treatments, and the most important is the spa therapists. Spa development becomes an interesting phenomenon to be studied when it is associated with an involvement of Balinese women as spa therapists in foreign countries. The world’s demand for Balinese spa therapists has become the motivation of women to work in this area. The work and life of Balinese spa therapists while they are working in foreign countries serve as parameters to know their quality of life, and these parameters are also the main focus of this study. Through in-depth interviews and questionnaires distributed to 20 therapists it was found out that 85 percent of them have revealed an improvement in their quality of life that is influenced by two factors: the material and intimacy factors. The material factor in question refers to the economic improvement of the family as they could earn enough income to cover their family needs. The intimacy factor in question refers to closeness and a sense of solidarity fostered while they are working abroad and the relationship within the family. This study concludes that the most important part of the development of spa in Bali is its female Balinese spa therapists due to the image that Balinese women working as spa therapists are loyal, hard-working and honest making them in demand among tourists who are seeking spa treatments. Being a spa therapist can improve their quality of life, which means that subjectively both material and intimacy factors are the aspects that affect the quality of life of the Balinese spa therapists.


2021 ◽  
pp. bmjinnov-2020-000557
Author(s):  
Sharon Rikin ◽  
Eric J Epstein ◽  
Inessa Gendlina

IntroductionAt the early epicentre of the COVID-19 crisis in the USA, our institution saw a surge in the demand for inpatient consultations for areas impacted by COVID-19 (eg, infectious diseases, nephrology, palliative care) and shortages in personal protective equipment (PPE). We aimed to provide timely specialist input for consult requests during the COVID-19 pandemic by implementing an Inpatient eConsult Programme.MethodsWe used the reach, effectiveness, adoption, implementation and maintenance implementation science framework and run chart analysis to evaluate the reach, adoption and maintenance of the Inpatient eConsult Programme compared with traditional in-person consults. We solicited qualitative feedback from frontline physicians and specialists for programme improvements.ResultsDuring the study period, there were 46 available in-person consult orders and 21 new eConsult orders. At the peak of utilisation, 42% of all consult requests were eConsults, and by the end of the study period, utilisation fell to 20%. Qualitative feedback revealed subspecialties best suited for eConsults (infectious diseases, nephrology, haematology, endocrinology) and influenced improvements to the ordering workflow, documentation, billing and education regarding use.DiscussionWhen offered inpatient eConsult requests as an alternative to in-person consults in the context of a surge in patients with COVID-19, frontline physicians used eConsult requests and decreased use of in-person consults. As the demand for consults decreased and PPE shortages were no longer a major concern, eConsult utilisation decreased, revealing a preference for in-person consultations when possible.ConclusionsLessons learnt can be used to develop and implement inpatient eConsults to meet context-specific challenges at other institutions.


Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2670
Author(s):  
Moira O’Connor ◽  
Greta Smith ◽  
Ashleigh Pantaleo ◽  
Darren Haywood ◽  
Rhys Weaver ◽  
...  

Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.


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