Living Library

Video Vignettes of Real Patients and Caregivers

The Living Library is a collection of videos of patients and caregivers talking about their experiences during their health journeys. The videos illustrate how vital topics—healthcare teams, communication and relationship building, stigma and assumptions, chronic disease, substance use, end-of-life, and healthcare advocacy—are to the learning of health professional students.

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Note: You will need to use your Campus-Wide Login (CWL) to access the Living Library, or contact cathy.kline@ubc.ca for access.

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Healthcare Teams

Jon: Arthritis and Painful Feet (5:23)

Jon shares his experience with arthritis and makes his case for the patient-centred approach and for better collaboration within healthcare.

You cannot take someone off the street and just turn them into whatever you want...

Topics: physical therapy, kinesiologists and biomechanics, collaborative patient-centered care and shared decision making

Mandy & Sophie: A Caregiver’s Journey Part 2 (2:53)

Mandy describes changes she made to her home and lifestyle and how she built her health care dream team.

..that gave everybody ownership that Sophie wasn't just a number.

Topics: chronic disease self-management, team- based care, patient-centred care.

Marge & Eric: Collaborative Healthcare with Families (5:11)

Marge recounts her experience bringing healthcare professionals together to work with Eric, discusses the current state of the system and offers her hopes as a mother of a child born with cognitive disabilities.

…professionals and families, we were all working together.

Topics: communication, collaborative care, family- centred care, advocacy, neurological disability, neurodiversity

Michael: Anything is Possible (4:24)

Michael elaborates on how his life has changed as a traumatic brain injury survivor and emphasizes the importance of physical and mental resilience during recovery.

I have the best teams of people behind me...

Topics: traumatic brain injury, patient-centered care, resiliency

Communication and Relationship Building with Healthcare Professionals

Thom: History Matters (3:47)

Every patient has a history beyond the chart, and history matters. Thom discusses some of the intricacies in the relationship between patient and practitioner.

That confirms to me that I’m not good enough…

Topics: mental health, relationship, more than medical history, building trust, vulnerability

Kristie: What and Why (3:27)

Questions are important tools for practitioners. Kristie describes the difference between “what” and “why” and how these respective questions achieve different but related goals in the patient-practitioner relationship.

…you’re trying to find out who they are to find the best way to help them…

Topics: communication, relationship, patient- centered care

Mandy & Sophie: A Caregiver’s Journey Part 1 (1:05)

Mandy recounts receiving her young daughter’s life changing diagnosis of Prader-Willi Syndrome over the phone.

She gave me the diagnosis of my daughter over my phone...

Topics: ethics, professionalism, communication, caregiving, rare diseases, breaking bad news

Darren: The Journey to Disclosure (1:39)

Darren shares the flood of emotions and feelings one has after a positive HIV diagnosis.

Your life will forever change once I tell you something...

Topics: criminalization, empathy, breaking bad news, communication, ethics

Al: Being HIV+ what needs to be said? (1:38)

Al details a first aid experience in Mexico to show why health professionals should always follow proper first aid procedures.

You're going to follow proper first aid procedures aren't you?

Topics: ethics, communication, stigma, patient safety

Paul: Advice for Healthcare Providers (7:44)

Paul gives four key pieces of advice on how healthcare providers can best support individuals with HIV.

I'm gonna have to believe that you have my best interest at heart and understand me.

Topics: HIV, communication, patient-centered care, building trust

Vikram: Being Honest (5:19)

Vikram recounts a non-satisfactory experience with healthcare professionals and stresses the importance of compassion, communication, and collaboration.

I had no way to communicate with anybody when I woke up.

Topics: stroke, cancer, communication

Stigma, Assumptions, and Stereotypes

Daryl: An Experience with Assumptions (1:00)

Daryl recounts a negative moment in his health care journey that occurred as a result of stereotypes.

Things went terribly wrong by the afternoon...

Topics: stigma, communication, professionalism

Her and Her Healthcare: A Look into the Relationship Between Healthcare and Teen Girls (4:20)

Three friends discuss intersectional experiences of black and indigenous girls with healthcare.

How could she even ask you a question like that?

Topics: intersectionality, relationship, teen girls

Thom: History Matters (3:47)

Every patient has a history beyond the chart, and history matters. Thom discusses some of the intricacies in the relationship between patient and practitioner.

That confirms to me that I’m not good enough…

Topics: mental health, relationship, more than medical history, building trust, vulnerability

Karen: The Journey to Acceptance (5:47)

Karen narrates her experiences in coming to terms with having cerebral palsy and provides examples of the everyday stigma that comes with the condition.

The more I talk about it the more confident I become.

Topics: cerebral palsy, stigma and stereotypes, communication, empathy

Chronic Disease

Al: A Journey of Living Positive (3:14)

Al discusses living with HIV, his experiences with drug trials, medication side effects, and managing depression due to a chronic health condition.

He said at this point you really don't have much to lose...

Topics: medication side effects, mental health, advocacy, stigma

Jon: Arthritis and Painful Feet (5:23)

Jon shares his experience with arthritis and makes his case for the patient-centred approach and for better collaboration within healthcare.

You cannot take someone off the street and just turn them into whatever you want...

Topics: physical therapy, kinesiologists and biomechanics, collaborative patient-centered care and shared decision making

Marge & Eric: Collaborative Healthcare with Families (5:11)

Marge recounts her experience bringing healthcare professionals together to work with Eric, discusses the current state of the system and offers her hopes as a mother of a child born with cognitive disabilities.

…professionals and families, we were all working together.

Topics: communication, collaborative care, family- centred care, advocacy, neurological disability, neurodiversity

Jory & Robin: A Journey with Alzheimer’s Disease (3:57)

Jory shares how his wife’s Alzheimer’s diagnosis taught him about selflessness, commitment, and heartbreak, as well as the progression of the disease and how he coped as her caregiver.

The heartbreak has been the hardest...

Topics: caregiving, advocacy, resiliency, family- centred care, palliative and end-of-life care

Donna: Caring to the End (3:11)

Donna shares her experiences becoming Neil's full-time caregiver as his ALS deteriorates, resulting in his death.

…he was trapped in his body...

Topics: caregiving, end of life, palliative care, quality of life, death, faith, motor neuron disease, ALS, PLS

Kristie: Maybe I'm More Healthy than I Realized (8:53)

Kristie shares her experiences coping with chronic illness, and how her grief lent her strength.

I had processed my grief with the loss of many things in my life...

Topics: resilience, grief, loss

Darren: And Then You Get a Diagnosis that Changes Your World (5:28)

Darren shares why he left the corporate world following his diagnosis and how running has positively contributed to his career and personal wellbeing.

Otherwise I'm just gonna die on a couch...and that's just not a good story.

Topics: communication, resiliency, HIV, patient-centered care

Substance Use

Deb: I'm Just Trying to Keep My Kid Alive (11:45)

Deb tells the story of her child’s struggles with addiction and navigating health services.

We have to look at addiction more holistically.

Topics: substance use, resiliency, mental health, communication

End-of-Life

Donna: Caring to the End (3:11)

Donna shares her experiences becoming Neil's full-time caregiver as his ALS deteriorates, resulting in his death.

…he was trapped in his body...

Topics: caregiving, end of life, palliative care, quality of life, death, faith, motor neuron disease, ALS, PLS

Eve: Dying with Dignity (2:00)

Eve speaks about the loss of her husband and shares her perspective on dying.

...maybe I’ll end up in the hospital and no one will realize what I want.

Topics: end of life, assisted death, advanced directives

Jory & Robin: A Journey with Alzheimer’s Disease (3:57)

Jory shares how his wife’s Alzheimer’s diagnosis taught him about selflessness, commitment, and heartbreak, as well as the progression of the disease and how he coped as her caregiver.

The heartbreak has been the hardest...

Topics: caregiving, advocacy, resiliency, family- centred care, palliative and end-of-life care

Healthcare Advocacy

Rob: A Journey of Aphasia & Hope (1:55)

Rob discusses how his stroke resulted in global aphasia, how he learned to talk again, and how hope got him through it.

I was Royal Canadian Air Force and CEO of Regina airport and had a stroke.

Topics: communication, patient-centred care, breaking bad news

Mario & Lynn: Different Journeys with Dementia (2:35)

Mario and Lynn discuss the stages from denial to acceptance in dementia diagnoses, stress the importance of positive language, individualized treatment and the role of peer support.

Dementia is really an umbrella term...

Topics: communication, advocacy, brain health, community resources and peer support

Chris: Mobility Matters (2:47)

Chris describes what transportation and mobility is like for him and shows how his wheelchair can empower.

I can stand up so that people see me eye-to-eye.

Topics: disability, transportation, mobility, independence, wheelchair demonstration

Maxine: A Journey with Hearing Loss (2:16)

Maxine discusses her journey with hearing loss and life after a cochlear implant.

How can I best communicate with you?

Topics: communication, health and technology

Her and Her Healthcare: A Look into the Relationship Between Healthcare and Teen Girls (4:20)

Three friends discuss intersectional experiences of black and indigenous girls with healthcare.

How could she even ask you a question like that?

Topics: intersectionality, relationship, teen girls

Alexandra: Life is like a Speeding Train (4:58)

Alexandra shares her amputation story and emphasizes the importance of internal motivation in amputee patients. 

I was very very motivated to start walking again.

Topics: amputation, resiliency, internal motivation