The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study.
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2023
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Annals of Medicine
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Abstract
Introduction: Understanding patient and caregiver experience is key to providing person-centered
care. The palliative care approach includes holistic assessment and whole-person care at the end
of life, that also involves the patient’s family and loved ones. The aim of this study was to describe
the way that family caregivers experienced patients’ deaths during their loved ones’ last hospital
admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units.
Methods: A qualitative case study approach was implemented. Family caregivers of terminally ill
patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were
included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses
present during the patient’s last hospital admission. Data were collected via in-depth interviews
and researchers’ field notes. Semi-structured interviews with a question guide were used. A
thematic inductive analysis was performed. The group of caregivers of patients admitted to the
PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately,
through a matrix.
Results: In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two
main themes were identified: caregivers’ perception of scientific and technical appropriateness of
care, and perception of person-centred care. Scientific appropriateness of care was subdivided
into two categories: diagnostic tests and treatment, and symptom control. Perception of
person-centred care was subdivided as: communication, emotional support, and facilitating the
farewell process. Caregivers of patients admitted to a PCU unit described their experience of
end-of-life care as positive, while their Non-PCU unit counterparts described largely negative
experiences.
Conclusions: PCU provides a person-centered approach to care at the end of life, optimizing
treatment for patients with advanced disease, ensuring effective communication, establishing a
satisfactory professional relationship with both patients and their loved ones, and facilitating the
farewell process for family caregivers.
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Keywords
Caregivers, Palliative care, Palliative medicine, Qualitative research