Advisory Committee
The Advisory represents the diverse specialties and expertise across the cancer program and includes current and former caregivers and patients.
Co-Chairs:
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Meredith Giuliani, Medical Director, Cancer Education; Radiation Oncologist
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Janet Papadakos, Co-Director, Cancer Health Literacy Research Centre, Princess Margaret Cancer Centre
Provincial Head, Patient Education, Ontario Health (Cancer Care Ontario)
Committee:
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Kelly Anne Branco, Patient
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Jennifer Croke, Radiation Oncologist
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Jessica Danquah, Physician Assistant
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Celina Dara, Clinical Site Leader, Pharmacy
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Jennifer Deering, Nurse Practitioner, Head and Neck Cancer Site Group
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Patrice de Peiza, Occupational Therapist
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Melissa Gomes, Patient and Caregiver
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Abha Gupta, Medical Director, Adolescent and Young Adult (AYA) Oncology Program
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Sarah Hales, Psychologist, Caregiver Clinic Co-Lead
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Breffni Hannon, Lead, Palliative Care, Princess Margaret Cancer Centre
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Mary Hooey, Business Manager, Princess Margaret Cancer Centre and Caregiver
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Jennifer Jones, Director, Cancer Rehab and Survivorship
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Mike Lovas, Design Director, Healthcare Human Factors
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Andrew Matthew, Senior Staff Psychologist
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Susie Monginot, Clinical Nurse Specialist
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Anne Newman, Caregiver
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Rinat Nissim, Psychologist, Caregiver Clinic Co-Lead
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Tina Papadakos, Co-Director, Cancer Self-Management Research Centre, Princess Margaret Cancer Centre
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Andrea Pozo, Instructional Designer
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Anca Prica, Hematologist and Site Lead, Lymphoma and Myeloma Program
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Gary Rodin, Head, Department of Psychosocial Oncology and Palliative Care
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Santhosh Thyagu, Medical Director, Acute Oncology Program
Studies Related to Caregiver Program
Ongoing Studies
Assessing the Comprehensive Training Needs of Informational Caregivers of Cancer Patients: A Qualitative Study
Team Members: Janet Papadakos, Naa Kwarley Quartey, Tina Papadakos, Meredith Giuliani, Mohamed Ugas, Andrew Stechkevich, Mary Hooey
Collaborators: David Wiljer, Jennifer Deering, Santhosh Thyagu
The objective of this study is to verify and explore the education and training needs of informal caregivers of cancer patients. The results from this study will directly inform the creation of a comprehensive caregiver curriculum.
Investigating the Informational and Supportive Care Needs of Cancer Patients and Their Caregivers
Principal Investigator: Janet Papadakos
The aim of this study is to solicit patient and caregiver input about their cancer-related informational and supportive care needs. The needs of caregivers will be determined in three ways: identifying unique informational needs of patients and caregivers, determining how much information they need on each topic, and analyzing how patients and caregivers prefer to get this information. The results of this study will directly inform the adaptation and development of new information and supportive care resources. The results of this study will also help guide program expansion in the different cancer clnics in ways that support patient and family-centred education and empowerment.
The Experiences of Cancer Caregivers who are Newcomers with Limited Language Proficiency: A Scoping Review
Team Members: Mijia Murong, Lorraine Pirrie, Eleni Giannopoulos, Meredith Giuliani, Janet Papadakos
The objective of this review is to explore what is known about cancer caregivers who are newcomers with limited language proficiency with respect to the dominant language of their country of residence. The literature search yielded 11,165 articles, with 93 articles meeting inclusion criteria. Findings from this review will help generate an understanding of how to better support cancer caregivers and help inform development of programs to address their unique communication needs.
What Are We Doing to Support Informal Caregivers? A Scoping Review of Caregiver Education Programs in Cancer Care
Authors: Janet Papadakos, Diana Samoil, Ben Umakanthan, Rebecca Charow, Jennifer M. Jones, Andrew Matthew, Rinat Nissim, Aman Sayal, Meredith Giuliani
This review summarizes what is known about caregiver support programs. The literature search yielded 34,906 articles, leading to 119 articles meeting the inclusion criteria. The review concluded that most caregiver support programs have a unidimensional focus on psychoeducational training. There is also pronounced absence in the collection of participant socio-demographic data, which can provide important information about disparities in access to care.
Published Studies
- Samoil D, Abdelmutti N, Gallagher LO, et al.
Evaluating the effect of a group pre-treatment chemotherapy psycho-education session for chemotherapy-naive gynecologic cancer patients and their caregivers. Gynecol Oncol. 2021 Jan;160(1):234-243.
- Giuliani M, Brual J, Eng L, et al.
Investigating the Smoking Cessation Informational Needs of Cancer Patients and Informal Caregivers. J Cancer Educ. 2020 Oct;35(5):954-964.
- Tam S, Puri N, Stephens D, et al.
Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer. J Cancer Educ. 2018 Jun;33(3):528-535.
- Papadakos J, Agarwal A, Charow R, et al.
Informational Needs of Brain Metastases Patients and their Caregivers. Neurooncol Pract. 2019 Jan;6(1):47-60.
- Maqbool T, Agarwal A, Sium A, et al.
Informational and Supportive Care Needs of Brain Metastases Patients and Caregivers: A Systematic Review. J Cancer Educ. 2017 Dec;32(4):914-923.
- Papadakos J, Trang A, Cyr AB, et al.
Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and their Caregivers: a Qualitative, Instrumental Case Study. JMIR Cancer. 2017 May 24;3(1):e6.
Services
For caregivers of Princess Margaret patients, visit the Caregiver Clinic website for support and resources.
Want to know more about cancer? Visit
Cancer Answers to search for information, and
Cancer Classes Online to learn about cancer when you are ready.
