Rehabilitation: additional palliative care approaches

2017 ◽  
pp. 1229-1234 ◽  
Author(s):  
Matthew Maddocks ◽  
Sheila Payne
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Health Professionals ◽  
Goal Attainment ◽  
Assistive Devices ◽  
Goal Attainment Scaling ◽  
Allied Health Professionals ◽  
Direct Benefits ◽  
The Family ◽  
Drug Interventions

Palliative care and rehabilitation share many common traits. When codelivered, these specialties can provide a holistic, patient-centred approach to care that maximizes function irrespective of diagnosis. This chapter considers how palliative care and rehabilitation can be delivered together in practice, and outlines commonly used interventions with examples of evidence from hospice, acute, and community care settings. The text covers treatments offered by different allied health professionals, including physical activity and exercise, hydrotherapy, non-drug interventions for breathlessness, adaptations, and assistive devices, as well as speech and language, music, and art therapies. Thereafter, the chapter looks at how palliative rehabilitation treatments can be evaluated, both using conventional outcome measures and through the use of goal setting and goal attainment scaling. In addition to direct benefits to patients, rehabilitation approaches offer secondary benefits for family caregivers, especially when deterioration leads to the family assisting with physical caregiving and transfers.

Care without sufficient knowledge of people with home enteral tube feeding: a qualitative study

2021 ◽  
Vol 19 (10) ◽  
pp. 26-34
Author(s):  
Mehri Doosti-Irani ◽  
Farangis Heidari Goojani ◽  
Leila Rafiee Vardanjani ◽  
Kobra Noorian
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Health Professionals ◽  
Tube Feeding ◽  
Interview Data ◽  
Negative Consequences ◽  
Correct Position ◽  
Face To Face ◽  
Enteral Tube Feeding ◽  
The Family

Aim: This study aimed to explore family caregivers' experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-to-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: ‘abandoned training’ and ‘lack of knowledge of nutrition’. Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.

A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON
Keyword(s):  
Palliative Care ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Intervention Development ◽  
World Health ◽  
The Family ◽  
Key Variables ◽  
Supportive Interventions ◽  
The Impact

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

The Fourth Domain of Palliative Care

2018 ◽  
Author(s):  
E. Alessandra Strada
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Psychosocial Interventions ◽  
Social Needs ◽  
Family Meeting ◽  
Management Of Complications ◽  
Palliative Care Setting ◽  
The Family ◽  
The Many ◽  
Clinical Case Scenarios

This chapter proposes palliative psychology competencies in the fourth domain of palliative care, which addresses the social needs of the patient and the family. The unit of care in palliative care is represented by the patient and the family; thus, this chapter highlights the unique needs of family caregivers. The many challenges of caregiving are described by reviewing the literature and using clinical case scenarios. The risk factors and protective factors in caregiving are discussed and incorporated in assessment templates. Psychological and psychosocial interventions that can effectively support family caregivers are discussed. The function, structure, and execution of a family meeting in the palliative care setting is described. This chapter also describes bereavement support for family caregivers and the management of complications of bereavement.

Delirium in Advanced Cancer: A Psychoeducational Intervention for Family Caregivers

2002 ◽  
Vol 18 (4) ◽  
pp. 253-261 ◽  
Author(s):  
Pierre Gagnon ◽  
Cécile Charbonneau ◽  
Pierre Allard ◽  
Colette Soulard ◽  
Serge Dumont ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Terminal Care ◽  
Brain Dysfunction ◽  
Psychoeducational Intervention ◽  
Specific Intervention ◽  
Terminally Ill Cancer Patients ◽  
The Family ◽  
Global Brain

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p<0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.

scholarly journals The family caregiver’s discourse on the hospitalization of the elderly with Alzheimer’s disease O discurso do cuidador familiar sobre a hospitalização do idoso com doença de Alzheimer

2017 ◽  
Vol 9 (4) ◽  
pp. 1068
Author(s):  
Gabriela Pizelli Mocco Grillo ◽  
Aline Miranda Da Fonseca Marins ◽  
Rosâne Mello
Keyword(s):  
Data Analysis ◽  
Alzheimer Disease ◽  
Family Caregivers ◽  
Health Professionals ◽  
The Elderly ◽  
Descriptive Study ◽  
Structured Interview ◽  
Health Staff ◽  
Social Unit ◽  
The Family

ResumoObjetivo: Conhecer a percepção do cuidador sobre a hospitalização do idoso com Doença de Alzheimer. Método: Trata-se de um estudo descritivo, exploratório, de natureza qualitativa, realizado com onze cuidadores familiares de idosos com doença de Alzheimer. Os dados foram coletados no período de Abril a Junho de 2013 por meio de entrevista semiestruturada. A análise dos dados foi pautada no Discurso do Sujeito Coletivo. Resultados: Emergiram duas ideias centrais síntese: piora da função cognitiva do idoso com doença de Alzheimer durante o processo de hospitalização e o despreparo da equipe de saúde para cuidar de um idoso com demência.Conclusão: De acordo com os resultados obtidos, urge a necessidade de capacitação e/ou especialização dos profissionais de saúde para atender o idoso com demência e sua família. A família é parte integrante do cuidado a esse idoso, sendo fundamental compreendê-la e assisti-la como uma unidade social complexa.Descritores: Cuidadores, Doença de Alzheimer, Idoso, Hospitalização. AbstractObjective: To investigate the perception of the caregiver about the hospitalization of the elderly with Alzheimer disease. Method: This is a descriptive study, exploratory and qualitative in nature, performed with 11 family caregivers of elderly with Alzheimer disease. The data were collected during the period from April to June 2013 through semi-structured interview. The data analysis was based on the Collective Discourse of the Subjects. Results: Two summary central ideas emerged: worsening of cognitive function in the elderly with Alzheimer disease during the process of hospitalization and the lack of health staff to take care of an elderly with dementia. Conclusion: According to the results obtained, there is urgent need for training and/or specialization of health professionals to meet the elderly with dementia and their families. The family is an integral part of the care that elderly, being critical to understand it and watched it as a social unit complex.Descriptors: Caregivers, Alzheimer Disease, Elderly, Hospitalization. ResumenObjetivo: Investigar la percepción del cuidador acerca de la hospitalización de las personas mayores con la enfermedad de Alzheimer. Método: Este es un estudio descriptivo, exploratorio y de naturaleza cualitativa, realizado con 11 cuidadores familiares de ancianos con enfermedad de Alzheimer. Los datos fueron recolectados durante el periodo de abril a junio de 2013 a través de la entrevista semi-estructurada. El análisis de los datos se basa en el discurso de los sujetos colectivos. Resultados: Surgieron dos ideas centrales resumen: empeoramiento de la función cognoscitiva en los ancianos con enfermedad de Alzheimer durante el proceso de hospitalización y la Falta de personal sanitario a cuidar de un anciano con demencia. Conclusión: De acuerdo a los resultados obtenidos, existe la urgente necesidad de formación y/o especialización de los profesionales de la salud para atender a los ancianos con demencia y sus familias. La familia es una parte integral de la atención que los ancianos, siendo fundamental para entenderla y verla como una unidad social compleja.Descriptores: Cuidadores, Enfermedad de Alzheimer, Ancianos, Hospitalización.

Caring for people who take care: What is already done?

2021 ◽  
pp. 1-11
Author(s):  
Carolina Oliveira ◽  
Gabriela Fonseca ◽  
Neide P. Areia ◽  
Luciana Sotero ◽  
Ana Paula Relvas
Keyword(s):  
Mental Health ◽  
Palliative Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Mental Health Professionals ◽  
Technology Use ◽  
Intervention Programs ◽  
The Family ◽  
Psychological Symptomatology ◽  
Care Approach

Abstract Objective The growing prevalence and impact of cancer on the family system calls for a palliative care approach with the family as the unit of care. This study aimed at providing an overview of the intervention programs that have been developed to offer support to the family caregivers of oncologic patients receiving palliative care. Method Sixteen articles were included in the final review, encompassing (i) studies focused on intervention programs with family caregivers of cancer patients in palliative care, (ii) studies including a pre- and post-test evaluation of the intervention program, (iii) and studies whose cancer patients were at least 18 years old. Results A great heterogeneity was verified with respect to care settings, number of sessions, outcome measures, or timing of assessment within the reviewed programs. These findings mirrored the complexity of the palliative care approach, which is difficult to standardize. Nonetheless, some interventions with different features accomplished good and sometimes similar results. The studies’ main outcomes were clustered in five categories: psychological symptomatology, general quality of life, caregiving role, family relational variables, and bereavement/grief. Moreover, 44% of the main outcomes were psychological symptomatology of family caregivers, with an emphasis toward anxiety and depression. Also shown was a growing emergence of technology use among these interventions. Significance of results Results revealed a scarcity of family-oriented programs and lack of certified mental health professionals as interventionists. Future studies and interventions should focus on the positive outcomes of the caregiving experience and must acknowledge the cultural differences when trying to replicate programs. Considering that there is no precise formula for dealing with terminal illness and grief, we submit that family-centered and systemic lenses are excellent approaches for support during this adjustment process. In conclusion, the present study advocates for increased investment in the field, underscoring the importance of family caregivers’ mental health.

Supporting Families and Family Caregivers in Palliative Care

2019 ◽  
pp. 405-419
Author(s):  
Kelli I. Stajduhar ◽  
J. Nicholas Dionne-Odom
Keyword(s):  
Palliative Care ◽  
Best Practices ◽  
Family Caregivers ◽  
Healthcare System ◽  
Family Caregiver ◽  
Care Home ◽  
Community Resources ◽  
Vital Part ◽  
The Family ◽  
Specialized Unit

This chapter investigates best practices for nurses who are involved in supporting families and family caregivers in palliative care. It views the family as a specialized unit of care which contributes to the healthcare system in a substantive way. There are significant implications for families and family caregivers in taking on these responsibilities, and nurses play a vital part in maintaining the integrity and health of the family and family caregiver. With a focus on palliative care, specific suggestions are made for nurses’ assessments in identifying needs and providing subsequent interventions. Particular sites of care (home, acute, etc.) and implications arising from a range of disease categories are discussed. The chapter concludes with recommendations for identifying community resources.

Family caregivers voice their needs: A photovoice study

2014 ◽  
Vol 13 (3) ◽  
pp. 701-712 ◽  
Author(s):  
Jennifer Angelo ◽  
Richard Egan
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Health Professionals ◽  
Medication Management ◽  
Physical Demands ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Health ◽  
Photovoice Methodology

AbstractObjective:Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.Method:Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.Results:The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.Significance of results:Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

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