Abstract
In the last decade, clinicians have started to shift from an individualistic perspective of the patient towards family-centred models of care, due to the increasing evidence from research and clinical practice of the crucial role of significant others in determining the patient's adjustment to cancer disease and management. eHealth tools can be considered a means to compensate the services gap and support outpatient care flows. Within the works of the European H2020 iManageCancer project, a review of the literature in the field of family resilience was conducted, in order to determine how to monitor the patient and his/her family's resilience through an eHealth platform. An analysis of existing family resilience questionnaires suggested that no measure was appropriate for cancer patients and their families. For this reason, a new family resilience questionnaire (named FaRe) was developed to screen the patient's and caregiver's psycho-emotional resources. Composed of 24 items, it is divided into four subscales: Communication and Cohesion, Perceived Family Coping, Religiousness and Spirituality, and Perceived Social Support. Embedded in the iManageCancer eHealth platform, it allows users and clinicians to monitor the patient's and the caregivers' resilience throughout the cancer trajectory.
Highlights
Outpatient care flows are a common modality in oncology settings and they consist of short encounters at the clinic for medical consultation and/or therapy administration [1,2,3,4], which can take place several days or weeks from one another
There is only one measure of family resilience in cancer patients, namely the validation of the Family Resilience Assessment (FRA) in women with breast cancer, [38] which has an individualistic view of resilience and does not capture the systemic processes involved
This paper focuses on the implementation of an eHealth tool developed to monitor family resilience through a questionnaire named FaRe
Summary
Outpatient care flows are a common modality in oncology settings and they consist of short encounters at the clinic for medical consultation and/or therapy administration [1,2,3,4], which can take place several days or weeks from one another. Throughout the illness trajectories, patients and their families often express the need to receive reliable, sometimes extensive health-related information and counselling for decision-making They often ask for emotional and psycho-social support; screening for psychological distress within clinical consultations is often inadequate or insufficient due to various reasons such as lack of resources of the healthcare systems and stigma or privacy concerns of patients [7, 8]. A recent study assessing supportive care needs and attitudes towards eHealth in an online sample of cancer patients pointed out that psychological support is one of most frequently expressed needs [31], confirming the need for increased online encounters In this perspective, eHealth may represent a way to respond more broadly to these needs, in light of the fact that more and more individuals with cancer are facing important treatment decisions, emotional distress and physical challenges due to the disease or treatment plan. In the section ‘Implementation of the FaRe Questionnaire in the platform’, we present the implementation of the tool and the section ‘Conclusion’ concludes this paper and presents directions for future work
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