Palliative Care

2020 ◽  
pp. 54-76
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Palliative Care ◽  
Family Caregiving ◽  
Chronically Ill ◽  
Care Process ◽  
Family Narrative ◽  
The Family ◽  
And Function ◽  
Chronically Ill Patients ◽  
Patient Care Process ◽  
Existing Structure

Whether they are thrust into the caregiving role or volunteer for it, most caregivers want to know what to do, how to do it, and how to prepare for what is ahead. For some caregivers, information is empowering, and for other caregivers, it is overwhelming. Regardless, examine any study on family caregiving or talk to any family caregiver, and the conclusion will be the same: Family caregivers need information, education, and support. Few caregivers are able to fully understand and use available health information when advocating and caring for chronically ill patients, and this seriously complicates their ability to contribute to patient self-management and support at home. To help caregivers understand their role and get them the help they need, they have to be included in the healthcare system and in the patient care process. In recognizing that caregivers are current and future patients who need care too, this chapter (a) introduces palliative care to illustrate how the patient and family’s illness journey is powerfully influenced by their understanding of the disease and its treatment and (b) outlines the health literate care model to identify important reasons to integrate caregivers. Both foci of this chapter are radically impacted by the pre-existing structure and function of the family. Narrative features of caregiving are used to describe three illness journeys that caregivers traverse.

scholarly journals Humanistic Medicine, a Forgotten Concept? The Correct Approach in Palliative Care of Chronic Patients

2016 ◽  
Vol 1 (3) ◽  
pp. 300-302
Author(s):  
Sorin Albu ◽  
Septimiu Voidăzan
Keyword(s):  
Palliative Care ◽  
Chronically Ill ◽  
Medical Specialty ◽  
Theory And Practice ◽  
Chronic Patients ◽  
Medical Specialties ◽  
Total Pain ◽  
Humanistic Medicine ◽  
Human Side ◽  
Chronically Ill Patients

Abstract Palliative care in Romania is a relatively new emerging field. Challenges of this specialty, its uniqueness and the several problems posed by a particular category of patients, the chronically ill patients, make this medical specialty a particularly complex one in certain situations, requiring a multidisciplinary team well-prepared in terms of theory and practice. Unlike in the case of most medical specialties, particular emphasis is laid on the “human” side of medical care, this specialty introducing the concept of “total pain”.

Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences

1998 ◽  
Vol 14 (2) ◽  
pp. 14-22 ◽  
Author(s):  
Kelli I. Stajduhar ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Qualitative Methods ◽  
Family Caregiving ◽  
Family Members ◽  
Loved One ◽  
The Family ◽  
Care At Home ◽  
Depth Interviews ◽  
Hiv Aids ◽  
At Home

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

Identifying needs and improving palliative care of chronically ill patients

2012 ◽  
Vol 6 (3) ◽  
pp. 371-378 ◽  
Author(s):  
Xavier Gómez-Batiste ◽  
Marisa Martínez-Muñoz ◽  
Carles Blay ◽  
Jose Espinosa ◽  
Joan C. Contel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Chronically Ill ◽  
Chronically Ill Patients

scholarly journals Assessment of Knowledge and Attitude towards Palliative Care and Associated Factors among Nurses Working in North Wollo Hospitals

2021 ◽  
Vol 31 (2) ◽  
Author(s):  
Addisu Getie ◽  
Adam Wondmieneh ◽  
Ayelign Mengesha ◽  
Awet Fitwi ◽  
Getnet Gedefaw ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Education ◽  
Chronically Ill ◽  
Favorable Attitude ◽  
Good Knowledge ◽  
P Value ◽  
Binary Logistic Regression Model ◽  
Knowledge And Attitude ◽  
Chronically Ill Patients ◽  
North Wollo

BACKGROUND: Palliative care improves the quality of life of patients facing a life-threatening illness. Nurses should improve their caregiving capacity. In Ethiopia, palliative care is underestimated. The availability of data regarding the knowledge and attitude of nurses towards palliative care is critically important. Thus, this study aimed to assess the level of knowledge and attitude of nurses towards palliative care.METHODS: Institution-based, cross-sectional study was conducted in North Wollo hospitals. A simple random sampling technique was used. The data was collected using structured selfadministered questionnaires from February to March 2019. The analysis was done using a binary logistic regression model. P-value < 0.05 was considered as statistically significant.RESULTS: The result revealed that 59.7% of the respondents had good knowledge and 44.2% had a favorable attitude towards palliative care. Level of education, experience in caring for chronically ill patients, and experience in caring for dying family members within the last 6 months had a significant association with the knowledge of nurses. Monthly income, experience in caring for chronically ill patients, formal palliative care education, and knowledge were found statistically significant with the attitude of nurses towards palliative care.CONCLUSION: More than half of the nurses had good knowledge, but less than half of the respondents had a favorable attitude towards palliative care. Attention should be given towards palliative care by the health policy and needs to be incorporated into the national curriculum of nursing education.

scholarly journals The family as a member of palliative care assistance

2018 ◽  
Vol 12 (9) ◽  
pp. 2399
Author(s):  
Johnata Da Cruz Matos ◽  
Moema Da Silva Borges
Keyword(s):  
Palliative Care ◽  
Descriptive Study ◽  
Care Process ◽  
Active Member ◽  
Structured Interviews ◽  
The Family ◽  
Nursing Team ◽  
Care Assistance ◽  
Care Nursing ◽  
Therapeutic Possibilities

ABSTRACT Objective: to analyze the nurses' perception about the participation of family members in palliative care. Method: qualitative, exploratory, descriptive study, with the participation of ten nurses. Semi-structured interviews were conducted and the reports were submitted to thematic and content analysis procedures. Results: the importance of welcoming the family, and their inclusion in the care process represent one of the structuring axes of palliative care. The participants' discourse refers to the participation of the family in palliative care assistance either as an active member of the team, or as a passive one, as the object of care of the team. Conclusion: the family is one of the structuring axes of the care of patients outside therapeutic possibilities of healing, occupying the place of a protagonist and being integrated with the care team. While its collaborative attitude favors patient care, it also helps to keep it as an object of care. It can also be understood that the humanized approach to palliative care allows the Nursing team to encourage activities that were once part of the routine of the patient. Descriptors: Palliative Care; Nursing care; Humanization of Assistance; Family; Terminal Patient; Family Health.RESUMO Objetivo: analisar a percepção dos enfermeiros acerca da participação do familiar na assistência em cuidados paliativos. Método: estudo qualitativo, exploratório, descritivo, com a participação de dez enfermeiros. Realizaram-se entrevistas semiestruturadas e os relatos foram submetidos aos procedimentos de análise temática e de conteúdo. Resultados: a importância do acolhimento da família e a sua inclusão no processo de cuidar representam-se como um dos eixos estruturantes da assistência paliativista. O discurso dos participantes faz referência à participação da família na assistência em cuidados paliativos seja de forma ativa, como integrante da equipe, seja de forma passiva, como objeto de cuidado da equipe. Conclusão: a família é um dos eixos estruturantes da assistência a pacientes fora de possibilidades terapêuticas de cura ocupando um lugar de protagonista e sendo, ainda, integrada à equipe de cuidados. Enquanto a sua atitude colaborativa favorece o cuidado do paciente, também ajuda a mantê-la como objeto de cuidado. Pode-se, ainda, apreender que a abordagem humanizada dos cuidados paliativos permite que a equipe de Enfermagem incentive a realização de atividades que outrora integravam a rotina do paciente. Descritores: Cuidados Paliativos; Cuidados de Enfermagem; Humanização da Assistência; Família; Doente Terminal; Saúde da Família.  RESUMENObjetivo: analizar la percepción de los enfermeros acerca de la participación del familiar en la asistencia en cuidados paliativos. Método: estudio cualitativo, exploratorio, descriptivo, con la participación de diez enfermeros. Se realizaron entrevistas semiestructuradas y los relatos fueron sometidos a los procedimientos de análisis temático y de contenido. Resultados: la importancia de la acogida de la familia y su inclusión en el proceso de cuidar se representan como uno de los ejes estructurantes de la asistencia paliativista. El discurso de los participantes hace referencia a la participación de la familia en la asistencia en cuidados paliativos sea de forma activa, como integrante del equipo, sea de forma pasiva, como objeto de cuidado del equipo. Conclusión: la familia es uno de los ejes estructurantes de la asistencia a pacientes fuera de posibilidades terapéuticas de cura ocupando un lugar de protagonista y siendo, además, integrada al equipo de cuidados. Mientras su actitud colaborativa favorece el cuidado del paciente, también ayuda a mantenerla como objeto de cuidado. Se puede, además, aprehender que el abordaje humanizado de los cuidados paliativos permite que el equipo de Enfermería incentive la realización de actividades que otrora integraban la rutina del paciente. Descriptores: Cuidados Paliativos; Atención de Enfermería; Humanización de la Atención; Familia; Enfermo Terminal; Salud de la Familia.

Bereavement

2016 ◽  
Author(s):  
Richard D.W. Hain ◽  
Satbir Singh Jassal
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Multidisciplinary Team ◽  
Health Care Professionals ◽  
Chronically Ill ◽  
Grieving Process ◽  
Paediatric Palliative Care ◽  
The Family ◽  
The Individual ◽  
Different Levels

Death generates different levels of grief in people, most often linked to our relationship with the individual and our social cultural upbringing. As paediatric palliative care professionals dealing with the family, we are looked towards by other health-care professionals and society to help deal with the bereavement and its associated grief. It is important to recognize that it is not our sole responsibility. This chapter approaches grief through the models of bereavement theory, in order to provide a deeper understanding of this stage. It examines bereavement issues experienced by the chronically ill child, as well as those experienced by siblings, parents, and the community around the dying child. Attention is also given to managing bereavement, with advice provided on how the multidisciplinary team can help parents during the grieving process.

scholarly journals Self-Efficacy of People with Chronic Conditions: A Qualitative Directed Content Analysis

2018 ◽  
Vol 7 (11) ◽  
pp. 411 ◽  
Author(s):  
Fatemeh Ebrahimi Belil ◽  
Fatemeh Alhani ◽  
Abbas Ebadi ◽  
Anooshirvan Kazemnejad
Keyword(s):  
Content Analysis ◽  
Self Efficacy ◽  
Qualitative Content Analysis ◽  
Final Analysis ◽  
Chronically Ill ◽  
University Hospitals ◽  
Structured Interviews ◽  
The Family ◽  
Empowerment Model ◽  
Chronically Ill Patients

Background: Given the increasing prevalence of chronic illnesses and their complications, supporting and empowering chronically ill patients seems crucial. Self-efficacy is considered as a predictor for empowerment. The purpose of this study to explore of different aspects of self-efficacy among persons with chronic physical conditions based on the Family-Centered Empowerment Model (FCEM). Methods: this qualitative study is part of a larger study; sequential exploratory mixed-method for designing an instrument for the FCEM was conducted from May 2015 to March 2016 in two university hospitals. The sample was 22 participants, including chronically ill patients, family caregivers, and nurses. Data were collected through personal semi-structured interviews. Data analysis was performed concurrently with data collection through directed qualitative content analysis. Results: after determining the self-efficacy attributes in the family-center empowerment model, a category matrix was developed and the codes are placed in subcategories of the matrix. Most participants were female (58.0%), with a mean age of 49.50 years. The final analysis yielded a total of 247 units of analysis dispersed in eight subcategories belonging to four generic-categories. Conclusions: the findings of this study represent the dimensions of chronically-ill individuals’ self-efficacy that can be used to develop and implement programs for empowering chronic ill patients.

scholarly journals The Effect of Continuous Monitoring of Hypertension and Type 2 Diabetes Mellitus on the Number of Visits to Medical Specialists and Hospitalization: a Retrospective Study

Medicina ◽  
2013 ◽  
Vol 49 (11) ◽  
pp. 77
Author(s):  
Ruth Kalda ◽  
Katrin Vastra
Keyword(s):  
Diabetes Mellitus ◽  
Type 2 Diabetes ◽  
Type 2 Diabetes Mellitus ◽  
Family Physicians ◽  
Chronically Ill ◽  
Medical Specialists ◽  
The Family ◽  
Number Of Visits ◽  
Chronically Ill Patients

Objective. The aim of the study was to determine whether the implementation of the quality system (QS) in primary healthcare made the care of chronically ill patients in family practice more consistent and reduced the load in specialized medical care. Material and Methods. A quantitative retrospective cohort study using the database of the Es- tonian Health Insurance Fund was provided. Patients with diagnosed essential hypertension (HYP) and/or type 2 diabetes mellitus (DM2) formed the study group. If the family physician met the criteria for the monitoring of patients with DM2 and HYP set in the QS, the result was defined as positive. The number of disease-specific hospitalizations, the length of hospital stay, and the num- ber of visits to family physicians and medical specialists due to HYP or DM2 in 2005-2008 were evaluated. Results. Chronically ill patients (DM2 and HYP) in the lists of family physicians with a posi- tive QS result were 1.26 times more likely (95% CI, 1.25-1.28) to be continuously monitored than those in the lists of family physicians with a negative QS result. The 2 coexisting chronic diseases (DM2 and HYP) increased the chance of being continuously monitored and increased the number of visits. The chance of being monitored by a medical specialist alone was reduced if the family phy- sician participated in the QS (OR, 0.66; 95% CI, 0.64-0.69) and had a rural practice (OR, 0.53; 95% CI, 0.51-0.55) and if the patient was a woman and older and had a diagnosis of HYP alone. The participation of family physicians in the QS reduced the hospitalization risk (OR, 0.9; 95% CI, 0.88-0.94) as well as the number of hospitalizations for the patients with HYP (OR, 0.93; 95% CI, 0.87-0.99). Conclusions. The implementation of the QS in primary healthcare reduces the load in specialized medical care. A more detailed analysis of the effect of the QS on the workload and the organization of family practice as well as on the patients' morbidity and satisfaction could be done in the near future.

Book Review: Wittenberg, E., Goldsmith, J. V., Ragan, S. L., & Parnell, T. A. (2020). Caring for the Family Caregiver: Palliative Care Communication and Health Literacy. Oxford University Press

2021 ◽  
pp. 104990912199736
Author(s):  
Maryjo Prince-Paul
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Family System ◽  
Oxford University ◽  
Caregiver Health ◽  
The Family ◽  
Communication Needs ◽  
Oxford University Press

Caring for the Family Caregiver is published by Oxford University Press and introduces the novel framework of the Family Caregiver Communication Typology. The volume offers a close analysis of caregiver health literacy and patient outcomes and invites readers to consider the family system as the driver in shaping how family caregivers deal with chronic illness demands. The expertise of all authors (three health communication scholars and one nurse who is a health literacy expert) in the analysis illuminates the delicate balance between caregivers’ ability to understand and communicate in the context of social determinants of health. The book shares the interwoven challenges of palliative care, family caregiving, and health literacy. Caring for the Family Caregiver establishes the urgent call to address family caregiver information and communication needs and leaves the reader empowered to make changes in their own clinical practice communication and/or develop family caregiving research that addresses cultural and social factors.

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