scholarly journals “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2670
Author(s):  
Moira O’Connor ◽  
Greta Smith ◽  
Ashleigh Pantaleo ◽  
Darren Haywood ◽  
Rhys Weaver ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
The Body ◽  
Social Constructionist ◽  
Family Carers ◽  
Writing Therapy ◽  
The Family ◽  
Qualitative Descriptive ◽  
Bereaved Family ◽  
Delays In Diagnosis

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.

scholarly journals Experience of temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients

2021 ◽  
Author(s):  
Go Sekimoto ◽  
Sakiko Aso ◽  
Naoko Hayashi ◽  
Keiko Tamura ◽  
Chieko Yamamoto ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Discharge Planning ◽  
Palliative Care Unit ◽  
The Family ◽  
Positive Experiences ◽  
Bereaved Family ◽  
Hospice And Palliative Care ◽  
Care Evaluation

Abstract Background: Some patients admitted to an inpatient palliative care unit (PCU), and who were discharged temporarily to home, later died at the PCU. The experiences of these patients and their families during temporary discharge are unclear.Methods: This study was part of a nationwide post-bereavement survey, the Japan Hospice and Palliative Care Evaluation 3 study. We sent questionnaires to the bereaved relatives of cancer patients who died in a PCU in 2018.Results: Of the 968 questionnaires sent, 571 (59%) were analyzed. Sixteen percent of the patients experienced temporary discharge from the PCU. Seventy-two percent of the bereaved family reported that the patients said, “I am happy to be discharged to home.” Between 22% and 37% of the patients reported an improvement in their condition after discharge. Family caregivers’ recognition of the better quality of the patient’s life at home and hospital doctors’ assurances of re-hospitalization whenever necessary, were significantly associated with positive experiences of temporary discharge.Conclusion: Bereaved family members recognized temporary discharge as a positive experience for both the patient and the family. Appropriate home palliative care and discharge planning contribute to positive experiences after discharge.

scholarly journals Experiências de cuidadores nos cuidados paliativos e redes de suporte

2018 ◽  
Vol 12 (11) ◽  
pp. 2916
Author(s):  
Juliana Dias Reis Pessalacia ◽  
Alexandre Ernesto Silva ◽  
Débora Heloísa Quadros Araújo ◽  
Mírian Aparecida De Lacerda ◽  
Kelly Caroline Dos Santos
Keyword(s):  
Palliative Care ◽  
Psychosocial Support ◽  
Family Care ◽  
Minas Gerais ◽  
Support Networks ◽  
Support Network ◽  
Daily Routines ◽  
The Family ◽  
Apoyo Social ◽  
Qualitative Descriptive

RESUMOObjetivo: compreender as experiências vivenciadas por cuidadores familiares de pacientes elegíveis para cuidados paliativos. Método: estudo qualitativo, descritivo e exploratório, fundamentado na fenomenologia social. Entrevistaram-se 20 cuidadores cadastrados na atenção primária à saúde. Realizou-se a coleta de dados por meio de entrevista fenomenológica e interpretada através das fases de descrição, redução e compreensão. utilizou-se a técnica de Análise de Conteúdo na modalidade Análise Ttemática categorial, com o auxílio do programa ATLAS TI 7. Resultados: identificaram-se as categorias: Redes de apoio ao familiar cuidador; Dinâmicas e rotinas diárias de cuidados prestados pelo familiar; Sobrecargas físicas e mentais do cuidador familiar. Conclusão: vivenciaram-se pelos cuidadores importantes mudanças em suas rotinas diárias, o que acabou por ocasionar uma sobrecarga física e mental aos mesmos, levando à necessidade de redes de apoio formais e informais para estes cuidados. Observou-se a inexistência de uma rede de apoio formal aos cuidadores e a falta de treinamento e orientação suficientes para realização do cuidado junto a seu familiar. Ressalta-se a importância da atuação dos equipamentos da APS, por meio do apoio às necessidades biopsicossociais destes cuidadores. Descritores: Atenção Primária à Saúde; Cuidados Paliativos; Cuidadores; Apoio Social; Sistemas de Apoio Psicossocial; Percepção.ABSTRACT Objective: to understand the experiences by the family caregivers of patients eligible for palliative care. Method: this is a qualitative, descriptive and exploratory study, based on social phenomenology. There were 20 caregivers interviewed who were enrolled in primary health care in a city of Minas Gerais, Brazil. Data collection was performed through a phenomenological interview and interpreted through the description, reduction and understanding phases. As for the analysis of the data, the categorical thematic modality was used, with the help of the program ATLAS TI 7. Results: the following categories were identified: Support networks for the caregiver family; Dynamics and daily routines of family care; Physical and mental overloads of the family caregiver. Conclusion: The caregivers experienced important changes in their daily routines, which led to a physical and mental overload, leading to the need for formal and informal support networks for these care. There was a lack of a formal support network for caregivers and a lack of adequate training and guidance for the care of the family member. The importance of the performance of PHC equipment is highlighted, by supporting the biopsychosocial needs of these caregivers. Descriptors: Health Primary Care; Palliative Care; Caregivers; Social Support; Psychosocial Support Systems; Perception.                                                                                                          RESUMEN Objetivo: comprender las experiencias vividas por cuidadores familiares de pacientes elegibles para cuidados paliativos. Método: estudio cualitativo, descriptivo y exploratorio, fundamentado en la fenomenología social. Fueron entrevistados 20 cuidadores registrados en la atención primaria a la salud de un municipio de Minas Gerais, Brasil. La recolección de datos fue realizada por medio de entrevista fenomenológica e interpretada a través de las fases de descripción, reducción y comprensión. En el análisis de los datos, se utilizó la modalidad temática categorial, con el auxilio del programa ATLAS TI 7. Resultados: fueron identificadas las categorías: Redes de apoyo al familiar cuidador; Dinámicas y rutinas diarias de cuidados prestados por el familiar; Sobrecargas físicas y mentales del cuidador familiar. Conclusión: los cuidadores vivieron importantes cambios en sus rutinas diarias, lo que acabó por ocasionar una sobrecarga física y mental a los mismos, llevando a la necesidad de redes de apoyo formales e informales para estos cuidados. Se observaron la inexistencia de una red de apoyo formal a los cuidadores y la falta de entrenamiento y orientación suficientes para realización del cuidado junto a su familiar. Se resalta la importancia de la actuación de los equipamientos de la APS, por medio del apoyo a las necesidades biopsicosociales de estos cuidadores. Descriptores: Atención Primaria a La Salud; Cuidados Paliativos; Cuidadores; Apoyo Social; Sistemas de Apoyo Psicosocial; Percepción.

scholarly journals Analisis Kemampuan Keluarga dalam Penanganan Demam pada Balita di Desa Songgalan

2019 ◽  
Author(s):  
Theresia Trivika Millenia Agustin Rahmawati
Keyword(s):  
Body Temperature ◽  
Pharmacological Action ◽  
The Body ◽  
Warm Bath ◽  
Warm Water ◽  
Children Under Five ◽  
Under Five ◽  
The Family ◽  
Qualitative Descriptive ◽  
Descriptive Method

Background: Fever is a condition where the body temperature rises above normal and is the body's response to infection. At the age of five, children are vulnerable to various diseases, especially infections. Fever can be treated by pharmacological action in the form of antipyretic drugs and non-phamacologic actions. In handling fever, the family is the initial factor. This study aims to analyze how family members’ handling fever in child. Method: This study used a qualitative descriptive method by conducting interviews with a doctor as a resource person and five respondents, namely mothers who have children under five in Desa Songgalan. Results: The results of the study showed that four out of five respondents had used a thermometer as a marker of fever. All of the respondents took physical action to reduce fever such as giving warm water compresses, putting on thin clothes, taking a warm bath, drinking lots of water, and giving grated onions. Respondents also knew when to take the toddlers to a doctor when they have a fever. Conclusion: Mothers have been able to handle fever in children well by giving antypyretik and other physical actions.

O Estudo da Morte e dos Cuidados Paliativos: Ausências no Currículo de Medicina./ The Study of Death and Palliative Care: Curriculum in the Absence of Medicine.

1970 ◽  
Vol 3 (3) ◽  
pp. 74-86
Author(s):  
Maria das Graças Mota Cruz de Assis Figueiredo ◽  
Rita de Cassia M. T. Stano
Keyword(s):  
Palliative Care ◽  
Medical Education ◽  
Professional Practice ◽  
Medical Schools ◽  
The Body ◽  
The Family ◽  
Current Scenario ◽  
History Of ◽  
Education In Brazil ◽  
De Medicina

O presente artigo acompanha a história da formação médica no Brasil e levanta algumas das origens do cenário atual da prática da medicina no país, considerada como bastante resolutiva na busca da cura do corpo, mas despreparada para a abordagem do sofrimento global que acompanha o processo de adoecimento e da morte. As autoras enfatizam a necessidade de reavaliação crítica dos currículos das escolas de formação médica, buscando-se aliar à excelência técnica da prática profissional, valores como o cuidado integral ao doente por detrás da doença, e a atenção às necessidades deste e da família quando se avizinha a morte. Com base na sua experiência no ensino da Disciplina de Tanatologia e Cuidados Paliativos em duas Faculdades de Medicina, o artigo aponta como um dos caminhos para a construção de uma nova base curricular, mais responsivo à necessidade de profissionais e doentes, o ensino desta Disciplina nas diversas escolas médicas do país.  Palavras-chave: Tanatologia, Cuidados Paliativos, Currículo.       ABSTRACT This article outlines the history of medical education in Brazil and raises some of the origins of the current scenario of medical practice in the country, considered as quite resolute in the pursuit of healing the body, but unprepared for addressing global suffering that accompanies the process of illness and death. The author emphasizes the need for critical reappraisal of curricula of medical education, seeking to combine technical excellence in professional practice, values ​​as comprehensive care for the patient behind the disease, and attention to the needs of the family and when approaching death. Based on his experience in teaching discipline Thanatology and Palliative Care in two medical schools, the article points out how one of the ways to build a new base curriculum more responsive to the needs of professionals and patients, the teaching of this discipline in several medical schools in the country.  Keywords: Thanatology, Palliative Care, Curriculum.   

PROBLEMS OF FAMILIES WITH TERMINALLY ILL

2018 ◽  
Vol 28 (2) ◽  
pp. 603-611
Author(s):  
Tsvetka Boycheva ◽  
Mariya Dimitrova
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Member ◽  
New Technologies ◽  
Medical Science ◽  
Terminally Ill ◽  
Social Institution ◽  
The Family ◽  
Social Difficulties

In recent decades, there has been a growing public interest in palliative care. This is dictated by the ever increasing number of people who need it. With advances in medical science and the development of new technologies, life expectancy has increased, but at the same time, the number of years spent in illness and suffering has increased. Still, death is not defeated, but pain and suffering can be relieved, and the quality of life of the terminally ill and their families can be improved. Palliative care is overwhelming. They target the patient and his family. They meet the psychic, social, spiritual and cultural needs of the patient, provide training and support to relatives. The family is a social institution that ensures the biological and social continuity of the human race. There is a correlation between it and health. Today it is impossible to function and develop properly without providing optimal health to its members. Diseases of a family member adversely affect his or her functions. Reproductive, economic and psycho-emotional function is impaired. A home is a place where one lives fully and most people prefer their care to be done at home. The needs of patients in need of palliative care are specific. Apart from a health problem, they also have spiritual, social and mental needs. The most frequent care of these patients is taken by a relative or a family member. In most cases, they lack the necessary skills, resources and time. This clearly shows that the quality of life of these patients and their families is not guaranteed. The purpose of this study is to find out what influence has the care of terminally ill on his family. The subject of the study is 602 persons, close to terminally ill in 30 medical institutions in the country. Within a six-month period from 01.11.2017 to 30.04.2018. With the help of a direct individual survey, how the care of the terminally ill is reflected in his family was identified. Statistical methods for data processing and analysis were used. Results: The family is experiencing great stress when there is a severely sick patient in it. The lifestyle of the whole family is changing. Negative emotions accumulate and social contacts are disturbed. Economic and social difficulties, lack of time and lack of knowledge and skills are major problems in families with patients in need of palliative care. Respondents want to participate in training for the care of the sick, need professional help and support to ensure a better quality of life for their close and normal family functioning.

scholarly journals At the Grave We Make Our Song: A Palliative Care Study in Rural Guatemala

2016 ◽  
Vol 29 (1) ◽  
pp. 38-45 ◽  
Author(s):  
Erin Traister ◽  
Kim L. Larson ◽  
Dell Hagwood
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Involvement ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
The Family ◽  
Qualitative Descriptive ◽  
Training Opportunities

Purpose: We sought to understand decision making, family involvement, and cultural factors that influence palliative care for Guatemalans. Design: A qualitative descriptive study was conducted in Guatemala to explore palliative care experiences among seven participants. Findings: The overarching theme was Relief from Suffering, reinforced by three support systems: the family, community rezadora, and priest. The family made decisions and provided physical care. The rezadora sang prayers and prepared the home altar. The priest provided traditional sacraments. Discussion: The role of the rezadora should be considered in providing palliative care to Guatemalans. Some Guatemalans are unfamiliar with or have difficulty understanding the role of the nurse in palliative and end-of-life care. Implications: We suggest training opportunities using international resources to enhance the role for Guatemalan nurses in end-of-life care. Palliative care nurses in the United States may benefit from incorporating the rezadora into strategies that extend these services to Guatemalans.

Meeting the family: Measuring effectiveness of family meetings in a specialist inpatient palliative care unit

2012 ◽  
Vol 10 (1) ◽  
pp. 43-49 ◽  
Author(s):  
Breffni Hannon ◽  
Valerie O'Reilly ◽  
Kathleen Bennett ◽  
Karen Breen ◽  
Peter G. Lawlor
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Members ◽  
Palliative Care Unit ◽  
World Health ◽  
Healthcare Team ◽  
Care Needs ◽  
Family Meeting ◽  
Family Meetings ◽  
The Family

AbstractObjective:The World Health Organization (WHO) definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness …” recognizes the importance of family members in this setting. In practice, family meetings account for a significant amount of the weekly workload in a specialist inpatient palliative care unit. Despite this, there is little empirical evidence to support the benefits of family meetings from the perspective of family members.Method:A prospective study over 6 months, invited a designated family member to complete a self-report instrument (SRI) and the Family Inventory of Needs (FIN) questionnaire prior to, immediately following, and 48 hours after a planned family meeting attended by several members of the multidisciplinary team.Results:Thirty-one designated family members completed the study. The SRIs completed prior to a family meeting identified particular areas of concern and worry for family members, and also helped to generate an agenda based on the family's particular needs. The pre-meeting FIN identified areas of patient care of greatest importance to each family member, and asked them to rate whether particular care needs were presently met or unmet, in their opinion, by the healthcare team caring for the patient. Following the family meeting, repeat SRIs showed an overall reduction in concerns and increased confidence in dealing with those issues raised. Post-family meeting FIN scores confirmed a greater number of met care needs compared with pre-meeting scores, all of which were sustained over time.Significance of results:This study confirms the value of planned multidisciplinary family meetings for patients in specialist inpatient palliative care units. It identifies the often unmet needs of family members and the sustained benefits associated with formal family meetings.

Good end-of-life care in nursing home according to the family carers’ perspective: A systematic review of qualitative findings

2019 ◽  
Vol 33 (6) ◽  
pp. 589-606 ◽  
Author(s):  
Silvia Gonella ◽  
Ines Basso ◽  
Maria Grazia De Marinis ◽  
Sara Campagna ◽  
Paola Di Giulio
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Common Ground ◽  
Life Care ◽  
Family Carers ◽  
Basic Care ◽  
The Family

Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method. Data Sources: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. Results: In all, 18 studies met inclusion criteria. A ‘life crisis’ often resulted in a changed need of care, and the transition towards palliative care was sustained by a ‘patient-centered environment’. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident’s end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. Conclusion: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.

scholarly journals La muerte ante uno mismo. Respuestas de jóvenes estudiantes ante el pensamiento de la propia muerte.

2017 ◽  
Vol 33 (3) ◽  
pp. 630 ◽  
Author(s):  
Celia Martí-García ◽  
Manuel Fernández-Alcántara ◽  
Laura Ruiz-Martín ◽  
Rafael Montoya-Juárez ◽  
Cesar Hueso-Montoro ◽  
...  
Keyword(s):  
Nursing Students ◽  
Death And Dying ◽  
The Body ◽  
Cultural Worldview ◽  
Attitudes Toward Death ◽  
Open Questions ◽  
The Family ◽  
Values And Beliefs ◽  
Qualitative Descriptive ◽  
Self Administered Questionnaire

<p>Narratives produced by thinking and reflecting about death and dying may be themselves a source of new knowledge in the study of anxiety and attitudes toward death.  A qualitative descriptive study aimed to explore the features of thoughts, emotions and feelings about young people's own death, (nursing students) was conducted. 85 students voluntarily answered a self-administered questionnaire with open questions based on Mortality Salience, used in the Terror Management Theory. Content analysis using Atlas.ti software was performed. When reflecting upon their own death, participants reported substantive emotions such as fear, pain, distress, sadness or loneliness. The fear of their own death was specified as the inability to achieve goals in life, to leave the family and the dying process itself. When reflecting upon been physically dead, attributes of the decomposition of the body, spiritual attributes, beliefs, denial and preferences were identified. Cultural worldview, values and beliefs of each person were remarkably present when thinking about their own death.</p>

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