Strengthening support for cancer caregivers: an investigation of caregiving perceptions and informational needs

Introduction Unpaid caregivers play a key role in supporting people with cancer. However, their needs and perspectives are often overlooked, and few healthcare institutions offer dedicated support programs. To address this, we assessed and compared the perceptions and informational needs of unpaid caregivers and cancer patients.

Caregivers (N=115) and cancer patients (N=99) from a large urban cancer centre completed a one-time survey evaluating their perceptions of the medical care and caregiver support they had received, their informational needs, as well as their health literacy and computer proficiency. Caregivers also completed validated scales evaluating caregiver burden, preparedness, competence, and reward. We compared patients’ and caregivers’ reported perceptions and analyzed their informational needs across knowledge domains. We conducted stepwise regression to understand the relationship between participant characteristics and scores, including health literacy and caregiving burden, and their informational needs.

Patients underestimated many aspects of caregivers’ experience, and caregivers were less satisfied than patients with the medical care received. Caregivers with higher health literacy had lower informational needs and caregiver burden. Both groups expressed a strong need for medical information in addition to psychological, social, and practical support.

These results reveal a pressing need for proactive medical and practical training for caregivers to complement psychological interventions. Furthermore, interventions to improve public health literacy may enable those who become caregivers to better navigate the challenges of their role. Competing Interest Statement The authors have declared no competing interest. Funding Statement This study was supported by the Princess Margaret Cancer Foundation. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Institutional Research Ethics Board of the University Health Network gave ethical approval for this work (REB#: 09-0952). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.