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Caregivers’ concerns through health professionals’ eyes

Published online by Cambridge University Press:  05 January 2024

Carolina Oliveira Open the ORCID record for Carolina Oliveira [Opens in a new window] ,
Daniela Lourenço ,
Luciana Sotero  and
Ana Paula Relvas
Carolina Oliveira*
Affiliation:
Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal Chicago Center for Family Health, Chicago, IL, USA Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Daniela Lourenço
Affiliation:
Early Intervention National Association, Aveiro, Portugal InSenso, University of Coimbra, Coimbra, Portugal
Luciana Sotero
Affiliation:
Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Ana Paula Relvas
Affiliation:
Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
*
Corresponding author: Carolina Oliveira; Email: carolina.arc.oliveira@gmail.com
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Abstract

Objectives

Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called “informal caregivers.” The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.

Methods

An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.

Results

Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.

Significance of results

This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between “roles.” It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one’s illness, given how important it is to address the family’s needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people’s needs.

Keywords

Family caregiverspalliative carethematic analysiscaregivers’ obstacles
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 3 , June 2024 , pp. 499 - 510
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Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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