scholarly journals Experiences with making difficult decisions of the family caregivers of patients on prolonged mechanical ventilation: a qualitative study

2020 ◽  
Vol 9 (4) ◽  
pp. 1742-1751
Author(s):  
Yi-Wei Lee ◽  
Yu-Shan Hsieh ◽  
Feng-Hang Chang ◽  
Yi-Ling Wu ◽  
Sheng-Jean Huang ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Prolonged Mechanical Ventilation ◽  
The Family

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.

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

2020 ◽  
Vol 10 (4) ◽  
pp. 443-451 ◽  
Author(s):  
Yi-Han Lee ◽  
Jiao-Syuan Wang ◽  
Randall Curtis ◽  
Sheng-Jean Huang ◽  
Shy-Shin Chang ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Palliative Care ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Psychological Symptoms ◽  
Prolonged Mechanical Ventilation ◽  
Event Scale ◽  
Quality Of Dying ◽  
Care Family ◽  
The Impact

ObjectivesLittle is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.MethodsA longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.ResultsIn total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: −44.04% and 95% CIs −75.65 to −12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: −0.35% and 95% CI −0.58 to −0.11 on IES and coefficient: −0.22% and 95% CI −0.40 to −0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: −3.29% and 95% CI −6.32 to −0.25 on IES and coefficient: −3.22% and 95% CI −5.24 to −1.20 on CES-D).ConclusionsPalliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

scholarly journals Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study

Diseases ◽  
2021 ◽  
Vol 9 (4) ◽  
pp. 70
Author(s):  
Jasneet Parmar ◽  
Sharon Anderson ◽  
Bonnie Dobbs ◽  
Peter George J. Tian ◽  
Lesley Charles ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Qualitative Methodology ◽  
Negative Impact ◽  
Term Care ◽  
The Family ◽  
Pandemic Planning ◽  
Caregiver Role ◽  
Community Systems

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne’s interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

scholarly journals Perceived Needs of The Family Caregivers of People with Dementia in a Mediterranean Setting: A Qualitative Study

2019 ◽  
Vol 16 (6) ◽  
pp. 993 ◽  
Author(s):  
Sara Moreno-Cámara ◽  
Pedro Palomino-Moral ◽  
Lourdes Moral-Fernández ◽  
Antonio Frías-Osuna ◽  
Laura Parra-Anguita ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Emotional Health ◽  
Educational Interventions ◽  
Care Process ◽  
Perceived Needs ◽  
People With Dementia ◽  
The Family ◽  
Field Notes ◽  
Primary Health Care Centers

The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers’ own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers’ emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.

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.

Sign in / Sign up

Export Citation Format

Share Document