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Donna Thomson - McMaster University. Ottawa, ON, CA

Donna Thomson

Author, Caregiving Activist | McMaster University

Ottawa, ON, CANADA

Author and Leader in family caregiving - disability and aging Instructor, McMaster University Vice-Chair, Kids Brain Health Network





loading image Co-Author loading image Lessons I've Learned From a Life of Caregiving loading image loading image





Donna is the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014) and is the co-author of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman and Littlefield, June 2019). She blogs regularly at her website, The Caregivers’ Living Room (

Donna has a passionate interest in family engagement in health research. She is the Vice-Chair of Kids Brain Health Network (a National Network Centre of Excellence) and is the co-designer and co-instructor of a new post-graduate, online course in patient and family engagement in childhood disability research at McMaster University. Donna also teaches Caregiving Essentials, an online course for family caregivers at McMaster.

Industry Expertise (7)



Elder Care

Social Services

Health Care - Services

Government Relations


Areas of Expertise (5)

Health Care Navigation

Family Caregiving


Strategic Advocacy

Teaching, Coaching

Accomplishments (1)

Writer, Policy Options and Open Democracy (professional)

Donna Thomson writes on caregiving for Policy Options and for Transformation, an online publication of Open Democracy

Education (3)

University of Ottawa: BEd, Education 1977

Concordia University: BFA, Theatre (Performance) 1976

Magna Cum Laude

Central School of Speech and Drama: DTIE, Theatre in Education (Applied Drama) 1997

Affiliations (2)

  • Kids Brain Health Network
  • Child-Bright SPOR

Testimonials (2)

Dr. Samir Sinha, Director of Geriatrics, Sinai Health System and University Health Network, Toronto and Health Policy Research Director, National Institute on Ageing (Canada) | Mount Sinai Hospital

Nobody grows up planning to be a caregiver, but many of us will become one and sometimes when we least expect it. Donna Thomson and Zachary White bring powerful insights to help us understand what it means to be a caregiver and how to truly support those of us who will travel this unexpected journey. (Samir K. Sinha, Director of Geriatrics, Sinai Health System and University Health Network, Toronto and Health Policy Research Director, National Institute on Ageing (Canada)

Adrienne Gruber, Founder and President, The Caregiver Space | The Caregiver Space

Finally! A totally honest assessment of the caregiving experience. Not just another workbook, disease specific account or “how to” book (though there are many helpful guidelines), but a no-nonsense look at the ongoing reality and challenges of how the caregiving experience changes your life. Fear, anger, the unknown—normalcy—are dealt with in a direct, caring and expert manner. Whether you are a “newbie” or a long-term caregiver, this book illustrates all we have in common and gives us guidelines to cope wherever we are in our journey. (Adrienne Gruberg, Founder and President, The Caregiver Space)

Media Appearances (3)

Donna Thomson Unpacks The Duality of Joy and Burden of Care

Globe and Mail  print


Writing for the Globe and Mail, Zosia Bielski interviewed Donna Thomson for this feature article about her new, co-authored book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (Rowman & Littlefield, 2019)

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Crisis in Caregiving - White Coat/Black Art with Dr. Brian Goldman

CBC Radio  radio


Dr. Brian Goldman unpacks the crisis in Canadian family caregiving with Donna Thomson and Dr. Samir Sinha.

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Caring For the Caregivers with Kerri Miller

Minnesota Public Radio  radio


The number of caregivers in America is swelling. More than 40 million Americans currently care for an elderly or disabled loved one. As the baby boomers retire, that number will only grow. By all accounts, it’s a tough — if rewarding — job. Most family caregivers juggle paid work with their caregiving. Many of them are part of the so-called sandwich generation — caring for aging parents and young adult children. And the financial, health and social implications are dire. According to a study out of Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before their loved one dies. That’s why it’s important that the caregivers also learn to care for themselves. Thursday, Kerri Miller got practical suggestions from two experts who’ve been in the caregiving trenches and are now passionate about equipping others. Guests: Donna Thomson, activist, caregiver and author of “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”

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Event Appearances (3)

The Chambers Family Lecture, American Academy of Cerebral Palsy and Developmental Medicine

AGM, AACPDM  Fort Lauderdale, FLA


The Caregiving Effect: When Love Meets Necessity in Palliative Care

McGill Council on Palliative Care Annual Lecture  McGill University


Cities Deepening Community, Tamarack Institute

Asset Based Community Development Workshop  Waterloo, ON


Sample Talks (2)

Resilience, Optimism and Endurance: The Undervalued Survival Skills

Maintaining personal health and productivity through times of chaos and adversity is difficult, but not impossible. This talk will assist audience members to prepare for surviving difficult life events by creating personal support networks and developing strategies that enable effective crisis management while not compromising personal wellbeing.

About Care: Know What You Need and Get What You Want

Transitioning through levels of care can be confusing and traumatic, whether it is for yourself or for an ageing parent. This talk offers practical advice and strategic tips on how to survive the process with your sense of control, your dignity and your employment intact.



  • Keynote
  • Moderator
  • Panelist
  • Workshop Leader
  • Host/MC
  • Author Appearance


500 to 1000

Research Focus (1)

Using your lived experience to influence health research


I am a parent partner in disability health research. Caregiver partners in research use their lived experience to influence WHAT is researched and HOW it’s researched. We have the opportunity to ease the path of care for other families and improve opportunities for our own loved ones by increasing our knowledge. If this role interests you, ask your GP or specialist provider who to contact about joining a research project in your area. Early December in Ottawa, Canada was the place to be for childhood disability researchers and parent partners (youth too!). Back to back conferences hosted by Children’s Healthcare Canada and Kids Brain Health Network offered an amazing opportunity for learning, networking and presenting.

Research focus Image

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Articles (6)

Mobilizing the Hidden Army of First Responders

Policy Options

Donna Thomson, Vickie Cammack


ild fires. Torrential rains and flooding. Violent windstorms. As changing weather bombards us with evidence of the global climate crisis, we are ignoring some of our most powerful first responders – natural carers. In the country’s move to confront the climate crisis and to become carbon neutral, Canada also need to be care-positive, and that means leveraging the skills and capacities of our 8 million caregivers in disaster planning. Catherine McKenna, as Minister of Infrastructure and Communities, has a unique opportunity to lead on this agenda.

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Recognizing the Worth of Natural Caregivers

Policy Options

Donna Thomson, Vickie Cammack


The planet has a temperature, and it’s not just because of climate change. The unpredictability of the future is making us sick with worry. But in the meantime, we can always count on the love and care of family. . .can’t we? Not necessarily. Millennials might be surprised to learn they will spend more time and money looking after their parents than they will in caring for their own children. An aging population and smaller families together with reduced health and social care budgets make it clear that this is not dystopian fiction. Caring for someone takes a physical toll over time and creates unanticipated financial pressures. In the near future, these challenges will be exacerbated by the growing numbers of people living with demanding health conditions such as dementia with fewer and fewer people to take care of them. The natural web of caring that so many of us take for granted is at risk of unravelling. What is needed is a robust social movement that values the deeply personal and broad societal benefits of caring for one another without hiding the difficulties.

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Navigating the Transformation From Loved One to Caregiver

Open Democracy: Transformation

Donna Thomson, Zachary White


ersonal transformation is usually an experience we actively seek out - not one that hunts us down. But in the twenty-first century, becoming a caregiver is a transformation that comes at us because today the ‘call to care’ is at odds with the imperative of work and the call to individual achievement. Being a caregiver is not something most people think or dream about, let alone prepare for, even though it’s a role many of us will inhabit, since there are approximately 43 million informal caregivers in the United States and 6.5 million caregivers in the United Kingdom. When a loved one becomes a caregiver everything changes, including responsibilities, beliefs, hopes, expectations and relationships. Caregiving is always different than we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes, including an ongoing tension that becomes difficult to reconcile: this is a relationship you may not want but feel you must accept. In the resulting process of transformation, your loved one’s story, your story, your relationship story, and the ‘cure’ story you have mapped out in your head can betray you when what happens isn’t what you thought would happen - or should. It’s as if someone steals the script you have been working from your whole life through.

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Caregiving: A Nascent Social Revolution

Open Democracy: Transformation

Donna Thomson, Zachary White


Mention the word “caregiver” and what is the first thought that comes to mind? Older? Exceptional? Isolated and disconnected? Homebound and unemployed? Each of these stereotypes about care and caregivers is becoming increasingly outdated for the approximately 45 million people in the United States and 6.5 million people in the UK who’ve provided informal, unpaid care to a loved one in the last year, because family caregivers have already begun to transform how people care for one another. By 2060, Americans 65 and older are expected to increase in number from 46 to 98 million, disrupting our current systems of managing care and all those impacted by care in ways that defy comprehension - including patients, providers, caregivers, families, economies and workplaces. Right now, caregivers don’t simply give care, they are also creators of dynamic communities of support and community-based care delivery systems. As agents of change and influence for those at the margins of society including the disabled, the chronically ill and the aged, informal (non-paid) caregivers are at the center of this nascent social revolution. But these innovations - born from love and connection - are largely overlooked.

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On Becoming A Full Partner in Care

Canadian Medical Association Journal

Donna Thomson


A report card on developmental medicine experienced over our son's lifetime (27 years). Condensed from The Chambers Family Lecture, American Academy of Cerebral Palsy and Developmental Medicine AGM, Fort Lauderdale, 2016.

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Our Hope Approach for Ethics and Communication in Neonatal Neurological Injury

Journal of Developmental Medicine and Child Neurology

Eric Racine Emily Bell Barbara Farlow Steven Miller Antoine Payot Lisa Anne Rasmussen Michael I Shevell Donna Thomson Pia Wintermark


SECTIONSPDFPDFTOOLS SHARE Abstract Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision‐making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence‐based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well‐known disability paradox where patients self‐report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the “ouR‐HOPE” approach (Reflection, Humility, Open‐mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self‐assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.

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