Caregiver's quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care

Eleonora Borelli; Sarah Bigi; Leonardo Potenza; Fabio Gilioli; Fabio Efficace; Carlo Adolfo Porro; Mario Luppi; Elena Bandieri

doi:10.3389/fonc.2023.1213906

Caregiver's quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care

Front Oncol. 2023 Sep 14:13:1213906. doi: 10.3389/fonc.2023.1213906. eCollection 2023.

Authors

Eleonora Borelli¹, Sarah Bigi², Leonardo Potenza^{1

3}, Fabio Gilioli⁴, Fabio Efficace⁵, Carlo Adolfo Porro^{6

7}, Mario Luppi^{1

3}, Elena Bandieri⁸

Affiliations

¹ Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.
² Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, Milan, Italy.
³ Hematology Unit and Chair, Azienda Ospedaliera Universitaria di Modena, Modena, Italy.
⁴ Department of Internal Medicine and Rehabilitation, Unità Sanitaria Locale (USL), Modena, Italy.
⁵ Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA), Rome, Italy.
⁶ Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.
⁷ Center for Neuroscience and Neurotechnology, University of Modena and Reggio Emilia, Modena, Italy.
⁸ Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), Carpi, Italy.

Abstract

Introduction: Early palliative care (EPC) improves the quality of life (QoL) of advanced cancer patients and their caregivers. The increasingly widespread use of this care model requires the development of measures supporting its interventions. Although the construct of patient's QoL has been extensively investigated and several QoL measures have been further validated, there is a paucity of data concerning the QoL of the caregiver. In 2018, McDonald and colleagues addressed this issue by interviewing 23 primary caregivers of advanced cancer patients who participated in an EPC randomized clinical trial to understand their perspective on the QoL construct. The Authors identified six major dimensions associated with the construct of caregiver's QoL. The present retrospective study aimed to validate these dimensions on a larger sample and in a real-life EPC setting.

Methods: Previously collected reports from 137 primary caregivers of advanced cancer patients on EPC answering questions about their experience with this care model were qualitatively analyzed through a deductive, thematic approach to identify and confirm the six dimensions constituting the construct of interest based on McDonald's and colleagues' results.

Results: The six dimensions ("living in the patient's world", "burden of illness and caregiving", "assuming the caregiver role", "renegotiating relationships", "confronting mortality", and "maintaining resilience") were consistently found in the reports from primary caregivers in a real-life EPC setting, confirming to be significant themes associated to their QoL.

Conclusion: A definite and recurrent construct of primary caregiver's QoL as described by McDonald and colleagues was also found in a larger sample and in a real-life EPC setting. Thus it may lay the groundwork for the development of a dedicated questionnaire.

Keywords: advanced cancer; caregiver; early palliative care; quality of life; thematic analysis.

Grants and funding

This work was supported by grants to ML from the Progetto di Eccellenza Dipartimento MIUR 2017; the Charity Dinner Initiative in memory of Alberto Fontana for Associazione Italiana Lotta alle Leucemie, Linfoma e Mieloma (AIL)—Sezione Luciano Pavarotti—Modena-ONLUS; the Fondazione IRIS CERAMICA GROUP; and PNRR CN3 Terapia Genica-Spoke 2 (Project # CN 00000041).