scholarly journals Spiritual needs experienced by the patient's family caregiver under Oncology palliative care

2018 ◽  
Vol 71 (suppl 6) ◽  
pp. 2635-2642 ◽  
Author(s):  
Renata Carla Nencetti Pereira Rocha ◽  
Eliane Ramos Pereira ◽  
Rose Mary Costa Rosa Andrade Silva ◽  
Angelica Yolanda Bueno Bejarano Vale de Medeiros ◽  
Sueli Maria Refrande ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Coping Strategy ◽  
Family Caregiver ◽  
Spiritual Needs ◽  
Phenomenology Of Perception ◽  
The Family ◽  
The Moment ◽  
Phenomenological Interview

ABSTRACT Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.

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.

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.

scholarly journals Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver

2021 ◽  
Vol 42 ◽  
Author(s):  
Lays Pedrosa dos Santos Costa ◽  
Isabel Comassetto ◽  
Regina Maria dos Santos ◽  
Amuzza Aylla Pereira dos Santos ◽  
Guilherme Oliveira de Albuquerque Malta ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Transformation Process ◽  
Existential Phenomenology ◽  
The Family ◽  
Philosophical Framework ◽  
Lateral Sclerosis

ABSTRACT Objective To understand the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis. Method Qualitative study based on assumptions of Martin Heidegger Existential Phenomenology, with 12 family caregivers of the person with Amyotrophic Lateral Sclerosis, in Alagoas. The testimonies were obtained from June 2019 to March 2020 and analyzed, categorized, and discussed based on the theoretical-philosophical framework adopted and thematic literature. Results Phenomenological sense of the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis, unveiled with the categories: Being the caregiver of the person living with ALS; Being responsible for decision making; Resignifying the existence in view of the possibility of loss; Spirituality influencing the transformation process. Conclusions The family caregiver has an appropriate life due to the inherent vicissitudes of the disease, which provides moving moments that lead him to rethink his existence and to value life.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

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.

Respite Tourism for Family Caregivers

2015 ◽  
pp. 218-231
Author(s):  
Robert Holda
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Tourism ◽  
Target Market ◽  
Loved One ◽  
Specific Target ◽  
Personal Time ◽  
The Family ◽  
Effects Of Stress

One of the most misunderstood and unappreciated segments of society in relation to medical tourism is the family caregiver; those caring for a loved one who sacrifice their own employment schedule, their personal time for relaxing and recreation, and often and importantly their own health. The purpose of this chapter is to raise awareness of the plight of family caregivers as an issue for medical tourism, the effects of stress and burnout, and the essential need for respite of body, mind, and spirit for these central assistants in the matter of healthcare for patients. Though healthcare and its subset, medical tourism, are frequently perceived as focused on a “patient”, they also encompass many other individuals and organizations. As addressed here, the focus is on the family member caring for a loved one. The intent is to link the concept of medical tourism as an avenue for relaxation and respite to enhance the wellness of this specific target market.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals Patient and Family Caregiver Perspectives on Palliative Care Needs in End-Stage Liver Disease: A Qualitative Study (S855)

2019 ◽  
Vol 57 (2) ◽  
pp. 510-511
Author(s):  
Sandhya Mudumbi ◽  
Macy Stockdill ◽  
Nicholas Hoppmann ◽  
James Dionne-Odom ◽  
Brendan McGuire ◽  
...  
Keyword(s):  
Palliative Care ◽  
Liver Disease ◽  
Qualitative Study ◽  
Family Caregiver ◽  
Care Needs ◽  
End Stage Liver Disease ◽  
End Stage ◽  
Palliative Care Needs

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.

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