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

Frontiers in Oncology

Oncology

Carlo Adolfo Porro¹  Fabio Gilioli²  Sarah Bigi³  Eleonora Borelli⁴  Mario Luppi⁵  Leonardo Potenza⁵  Fabio Efficace⁶  Elena Bandieri⁷ 

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

关键词: early palliative care;    caregiver;    quality of life;    advanced cancer;    thematic analysis;   

DOI  :  10.3389/fonc.2023.1213906

 received in 2023-04-28, accepted in 2023-08-28,  发布年份 2023

来源: Frontiers

【 摘 要 】

IntroductionEarly 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.MethodsPreviously 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.ResultsThe 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.ConclusionA 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.

【 授权许可】

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