Study oriented towards what caregivers feel would work best for them demonstrates the need for screening for family-reported outcomes in cancer care.
Ingram School of Nursing researcher Sylvie Lambert, RN, PhD and PhD students Lydia Ould Brahim and Sydney Wasserman are among the co-authors of a study titled “From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care”. Published online in Palliative & Supportive Care, the objective of this study was to explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of what such a screening program should entailLydia Ould Brahim is in her final year of the PhD program. She previously completed an undergraduate degree in Environment and the Direct-Entry Master’s Program in Nursing. Sydney Wasserman is wrapping up her first year of the PhD Program in Nursing, having completed both her Bachelor of Science in Nursing and her Master of Science (Applied) in Advanced Nursing at McGill. We sat down with them to learn more about their involvement in this study and how nursing research can help meet the needs of caregivers.

Please describe your specific involvement in this particular research on family reported outcomes

Lydia: My thesis work is on a depression intervention designed to be used both by adults with chronic conditions and their caregivers. The aim is to support both as we understand that caregivers are an integral part of the unit of care. This idea is also reflected in this recently published article. Screening for caregiver outcomes (e.g., depression, distress) is an important step in addressing their unmet needs and knowing how to tailor our care.

Sydney: I am grateful to have been involved with this incredible project which seeks to better understand and address the needs of patients living with cancer as well as their caregivers. This study highlights the importance of involving the caregivers, families and loved ones who play such a pivotal role in the health trajectory of these patients.

What attracted you to caregiver-related research and what outcome do you hope to see?

Lydia: While studying to become a nurse, I was also a family caregiver. My later experience working as an RN in a hospital setting reinforced what an important role caregivers play. I hoped that by bringing these clinical and personal perspectives, I could help conduct research that was ultimately useful in meeting caregivers’ needs.

Sydney: I am very passionate about pursuing research that supports caregivers, particularly because of my clinical exposure to the important role of caregivers in patient care as an emergency nurse clinician. I have witnessed the power of engaging family caregivers, their eagerness to learn and support their loved ones, and the unrecognized burden and challenges they experience. I hope to contribute to the research supporting this population by providing resources curated for both the patient and their caregivers.

What did you like most about being involved in this project?

LydiaWhat I appreciate most is that it is clinically relevant (supports changing practice to better include caregivers) and that it is oriented towards what caregivers themselves feel would work best for them. Over 20 caregivers were interviewed for this project; I am very grateful for their contributions, and, as always, learned something unexpected.

Sydney: I appreciated the opportunity to work together with this team of researchers who share my passion and interest in involving caregivers’ reported outcomes in psychosocial screening programs. It is very rewarding to work on a project that seeks to improve the lives of caregivers who often dedicate so much of themselves to support others.

What has surprised you about caregivers?

Lydia: One of our findings was that most caregivers prioritized screening for emotional symptoms. We often think of the practical challenges first (e.g., transport, scheduling, cleaning, errands) – this was a good reminder that providing emotional support is also very important.

Sydney: What stood out to me among the findings of this study was the preference among caregivers to have the results from the family-reported outcomes (FRO) screening shared with the patient’s treating team rather than their primary care provider. I believe this emphasizes how interconnected the patient’s experience is with the caregivers.

Is there anything else you would like people to know about caregivers?

Lydia: When we think about the care people receive for chronic physical conditions like emphysema, diabetes, or cancer, we often think of formal healthcare systems (hospitals, clinics, home care). I was surprised to learn that 70-80% of all care for adults with chronic conditions is provided by their family and friends. On a daily basis, they are the ones providing support and are an often unacknowledged pillar of our healthcare system.

Sydney: This paper highlights the invaluable contributions of caregivers to our healthcare system and society as a whole and the importance of recognizing caregiver- and family-reported outcomes when delivering holistic care. Caregivers’ dedication, compassion and selflessness often go unrecognized, yet they are the unsung heroes who provide the most hands-on support to patients. We should acknowledge their sacrifices and prioritize the development of support structures to enhance their well-being.

What are your future plans in nursing and healthcare?

Lydia: My first step is to finish my PhD! Beyond that, I hope to continue working in research to support caregivers, ideally both at the clinical and policy levels.

Sydney: My academic journey at McGill has been incredibly enriching, allowing me to recognize how much I value both the clinical and research experience related to the field of nursing. I want to continue collaborating with interdisciplinary teams of researchers and clinicians and work towards creating resources that support and empower patients and their entire support system. I also hope to continue to bridge the gap between research and practice by advocating for family-centred care in all aspects of my career.