Robin Cohen has focused her research on optimizing the quality of life of people with life-threatening illness and that of their family caregivers. She began by developing measures of their quality of life (MQOL: McGill Quality of Life Questionnaire; QOLLTI-F: Quality of Life in Life-Threatening Illness – Family Caregiver version). She continues to work on improving them (e.g. MQOL-R: McGill Quality of Life Questionnaire – Revised). With those outcome measures she has conducted descriptive studies and is developing and testing interventions to improve patient and family caregiver quality of life. Her research interests also include the development and outcomes of Compassionate Communities. Current studies at McGill include:
- Implementing and formatively evaluating a volunteer Caregiver Coach service with the goal of empowering and supporting family caregivers of palliative care patients at home (with several colleagues and students)
- Testing an intervention to help advanced cancer patients, their family caregivers, and people who are recently bereaved to establish a new sense of purpose and meaning in life taking into account their new situation (with Melissa Henry)
- Elucidating how some people at the end of life manage to have existential wellbeing without professional help (with Philippe Carruzzo).
- Developing and testing a physical activity intervention to improve family caregiver outcomes (with Jamie Penner)
- Studying how a specialized interdisciplinary team makes treatment decisions to treat cachexia in advanced cancer patients (with Monica Parmar Calislar)
- Developing, implementing, and evaluating a program to increase acute care nurses' ability to provide and comfort with a palliative approach to caring for advanced heart failure patients (with Esther Laforest).
She has a close collaboration with colleagues Richard Sawatzky and Kelli Stajduhar in British Columbia, and Kara Schick-Makaroff in Alberta. A focus of this collaboration is to help the patient and family caregiver voices become central to healthcare through integration of assessment of their quality of life concerns, their experience with healthcare, and their needs into routine care.
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis KR & Cohen SR. Complicated grief following violent loss: The mediating role of meaning. Paper to be presented at 40th Annual Conference of the Association of Death Education and Counselling, April 25-28, 2018, Pittsburgh, PA, USA.
Gagnon P, Dumont S, Cohen SR, Gauthier LR, Savard J, Tardif F. Nouvelles perspectives pour la recherche en soins palliatifs au Québec: Le Réseau Québécois en soins palliatifs et de fin de vie (RQSPAL) - 90 minutes présentation orale - Congrès annuel de l’association québécoise de soins palliatifs (AQSP), 3-4 mai 2018 Drummondville, Québec, Canada.
Penner JL, Sabiston CM, Ducharme F, Cohen SR. An individually tailored physical activity intervention for family caregivers of people with advanced cancer: What and how much can they do? Oral presentation at the Canadian Association of Psychosocial Oncology Conference - Tailored & Targeted Interventions: The New Frontier of Psychosocial Interventions, May 30-June 1, 2018, Toronto, Ontario, Canada.
Parmar M, Jagoe RT, Purden M, Hunt M, Cohen SR. Interprofessional Clinical Reasoning: Explaining How Interprofessional Teams Make Shared Decisions in Advanced Cancer and Cachexia Care – Oral presentation at 22nd International Congress on Palliative Care, October 2-5, 2018, Montreal, Québec, Canada. J Pain Symptom Manage 56(6): e50.
Penner JL, Dewitte M, & Cohen SR. Self-care in family caregivers of people with advanced cancer: A scoping review. 22nd International Congress on Palliative Care, October 2-5, 2018, Montreal, Quebec, Canada. J Pain Symptom Manage 56(6): e53.
Chan LS, Macdonald ME, Carnevale FA, Cohen SR. The End of Life Implications of Patient Categorization on a Medical Ward. Oral presentation at the 22nd International Congress on Palliative Care, October 2-5, 2018, Montreal, Quebec, Canada. J Pain Symptom Manage 56(6): e62.
Laforest EM, *Hartley R, Michel CM, Cohen SR. Heart Failure Supportive Care Clinic: Improving Palliative Care Access for Patients Living with Advanced Heart Failure? 22nd International Congress on Palliative Care, October 2-5, 2018, Montreal, Quebec, Canada J Pain Symptom Manage 56(6): e112
Silbernagel P, Sawatzky R, Klarenbach S, Czupryn J, Iradukunda R, Palfreyman S, Cohen R, Lee L, Schick-Makaroff K. Patient-reported outcomes in clinical kidney practice: Development of education sessions for clinicians. 22nd International Congress on Palliative Care, Oct 2-5, 2018, Montreal, Quebec, Canada. J Pain Symptom Manage 56(6): e83
Yamaguchi S, Inokuchii E, Nakamurai M, Uza M, Okamura J, Sawatzky R, Cohen SR. Process of developing the family caregiver QOL scale: creating a culturally appropriate scale for Japanese, 22nd International Congress on Palliative Care, October 2-5, 2018, Montreal, QC, Canada
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis KR, Cohen SR. Rumination as a Moderating Process in the Development of Prolonged Grief Disorder Symptomatology. Within the symposium: Motivational and Self-Regulatory Processes Associated with Complicated Grieving. Association for Behavioural and Cognitive Therapies 52nd Annual Conference, Nov 15-18, 2018, Washington D.C.
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis K, Cohen SR. Prolonged Grief Disorder Following Violent Loss: The Role of Rumination and Meaning Making. 34th annual meeting of the International Society for Traumatic Stress Studies, Nov. 8-10, 2018, Washington D.C.
Axelsson L, Alvariza A, Carlsson N, Cohen SR, Sawatzky R, Årestedt K. Measuring quality of life in life-threatening illness: Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers/caregivers. EAPC 2019. 16th World Congress of the European Association for Palliative Care
Schick-Makaroff K, Cohen R, Sawatzky R, Reintzes F, Czupryn J, Kusi-Appiah E, Iradukunda R, Lee L, Palfreyman S, Silbernagel P, Mevawala A, Klarenbach S. Patient-reported outcomes in home dialysis: Development of workshops for multidisciplinary clinicians. Canadian Association of Nephrology Nurses and Technologists Annual Conference, Edmonton, AB, Oct 24, 2019.
D’Andrès P, Cohen SR. How do people reach and maintain existential wellbeing in the last year of life? A qualitative study. 11th World Research Congress of the European Association for Palliative Care. Palermo, Italy, May 14-6, 2020.
Selected recent publications
O.-d’Avignon M, Dumont S, Valois P, Cohen SR. The needs of siblings of children with a life-threatening illness: Part 2: Psychometric validation of a measurement instrument. Palliative and Supportive Care 2017; 15: 20-31. DOI:10.1017/S1478951516000316
Cohen SR, Sawatzky R, Russell LB, *Shahidi J, Heyland DK, Gadermann AM. Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire–Revised. Palliative Medicine 2017; 31(2): 120-129. DOI: 10.1177/0269216316659603
Stevenson M, Achille M, Liben S, Proulx MC, Humbert N, Petti A, Macdonald ME, Cohen SR. Understanding how bereaved parents cope with their grief in order to inform the services provided to them. Qualitative Health Research 2017; 27(5): 649-664. DOI: 10.1177/1049732315622189
O.-d’Avignon M, Dumont S, Valois P, Cohen SR. The needs of siblings of children with a life-threatening illness. Part 1: Conceptualization and development of a measure. Palliative and Supportive Care 2017; 15(6): 644-664.
Stajduhar KI, Sawatzky R, Cohen SR, Heyland D, Allan S, Bidgood D, Norgrove L, Gadermann A. Bereaved family members' perceptions of the quality of end-of-life care across four types of inpatient care settings. BMC Palliative Care 2017; 16:59. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-017-0237-5
Chan LS, Macdonald ME, Carnevale FA, Cohen SR. ‘I’m only dealing with the acute issues’: How acute medical ward ‘busyness’ privileges a curative orientation to care of the dying. Health 2018; 22(5): 451-458. http://journals.sagepub.com/doi/abs/10.1177/1363459317708822
Krawczyk M, Sawatzky R, Schick-Makaroff K, Stajduhar K, Öhlen J, Reimer-Kirkham S, Laforest E, Cohen SR. Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care. Qualitative Health Research, 2019; 29(4):510-521 http://journals.sagepub.com/doi/abs/10.1177/1049732318761366
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis K, Cohen SR. Prolonged grief symptomatology following violent loss: The mediating role of meaning. Eur J Psychotraumatology 2017, 8:sup6, 1503522, DOI: 10.1080/20008198.2018.1503522
Sawatzky R, Laforest E, Schick Makaroff K, Stajduhar K, Reimer-Kirkham S, Krawczyk M, Öhlén J, McLeod B, Hilliard N, Tayler C, Cohen SR. Design and introduction of a quality of life assessment and practice support system: Perspectives from palliative care settings. Journal of Patient-Reported Outcomes, 2018; 2:36. https://jpro.springeropen.com/articles/10.1186/s41687-018-0065-2.
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis K, Cohen SR. Rumination Moderates the Role of Meaning in the Development of Complicated Grief. J. Clin Psychology, 2019; 75(6): 1047-1065.
Milman E, Neimeyer RA, Fitzpatrick M, MacKinnon CJ, Muis K, Cohen SR. Prolonged Grief and the Disruption of Meaning: Establishing a Mediation Model. J. Counsel Psychol, 2019; 66(6); 714-725. https://psycnet.apa.org/doi/10.1037/cou0000370
Cohen SR, Russell LB, Leis A, Shahidi J, Porterfield P, Kuhl DR, Gadermann AM, Sawatzky R. More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire – Expanded. BMC Palliat Care, 2019; 18:92. https://doi.org/10.1186/s12904-019-0473-y
Schick-Makaroff K, Karimi-Dehkordi M, Cuthbertson L, Dixon D, Cohen SR, Hilliard N, Sawatzky R. Using patient- and family-reported outcome and experience measures across transitions of care for frail older adults living at home: A meta-narrative synthesis. The Gerontologist, 2020; doi: 10.1093/geront/gnz162
Axelsson L, Alvariza A, Carlsson N, Cohen SR, Sawatzky R, Årestedt K. Measuring quality of life in life-threatening illness – Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers. BMC Palliat Care 19, 40 (2020) https://doi.org/10.1186/s12904-020-00549-6
Resources developed as part of a Canadian Frailty Network-funded knowledge translation project. Learn More about Quality of Life Resources 2019-2020. Healthyqol.com http://judsonvis.com/healthyqol/