Living Library Catalogue

Patient Experiences

Darren: The Journey to Disclosure (1:39) UBC Health Mentor since 2012

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

Topics: HIV, disclosure

Darren: And Then You Get a Diagnosis that Changes Your World (5:28) UBC Health Mentor since 2012

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

Topics: HIV, resiliency

Al: A Journey of Living Positive (3:14) UBC Health Mentor since 2014

Al discusses living with HIV, his experiences with drug trials, medication side effects, and managing depression.

Topics: HIV, depression, medication side-effects, stigma

 

Al: Being HIV+ what needs to be said? (1:38) UBC Health Mentor since 2014

Al details an experience in Mexico to show why professionals should follow proper procedures.

Topics: HIV, patient safety, disclosure

Paul: Advice for Healthcare Providers (7:44) UBC Health Mentor since 2011

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

Topics: HIV, diagnosis, patient education, shared decision-making, quality of life

Thom: History Matters (3:47) UBC Health Mentor since 2018

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

Topics: HIV, mental health, abuse, building trust, vulnerability

Daryl: An Experience with Assumptions (1:00) UBC Health Patient & Community Advisory Committee Member since 2017

Daryl recounts a negative moment in his health care journey due to stereotypes.

Topics: hepatitis C, pain management, stigma

Maxine: A Journey with Hearing Loss (2:16) Western Institute for the Deaf & Hard of Hearing Audiometric Technician

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

Topics: hearing loss, cochlear implant, communication

Rob: A Journey of Aphasia & Hope (1:55) UBC Health Mentor since 2012

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

Topics: stroke, aphasia, hope

Vikram: Being Honest (5:20) UBC Health Mentor since 2020

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

Topics: stroke, cancer, hearing loss, visual loss, surgery, complex case management

Mario & Lynn: Different Journeys with Dementia (2:35) UBC Health Mentors since 2016

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.

Topics: dementia, Alzheimer disease, grief, acceptance

Jon: Arthritis and Painful Feet (5:23) UBC Health Mentor since 2017

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

Topics: arthritis, collaborative care, kinesiologists

Michael: Anything is Possible (4:24) UBC Health Mentor since 2018

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.

Topics: brain injury, coma, collaborative care, recovery, resiliency

Alexandra: Life is like a Speeding Train (4:58) UBC Health Mentor since 2018

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

Topics: necrotizing fasciitis, amputation, prosthetics, self-care, motivation

Chris: Mobility Matters (2:47) UBC Health Mentor since 2011

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

Topics: disability, wheelchair demonstration, transportation, mobility  

Karen: The Journey to Acceptance (5:48) UBC Health Mentor since 2018

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

Topics: cerebral palsy, disability, stigma, ableism, mobility

Gina: The Quilt (5:11) UBC Health Mentor since 2021 (OT Student Project)

Gina shares her journey of living with many chronic conditions and highlights the significance of resilience and support in coping with the uninvited challenges of her condition.

Topics: chronic pain, PTSD, grief, resiliency, support networks

Kristie: What and Why (3:27) UBC Health Mentor since 2014

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.

Topics: chronic pain, endometriosis, shared decision-making, quality of life

Kristie: Maybe I’m More Healthy than I Realized (8:53) UBC Health Mentor since 2014

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

Topics: chronic pain, endometriosis, resiliency, grief, quality of life

Eve: Dying with Dignity (2:00) UBC Health Mentor since 2014

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

Topics: end of life care, assisted death, advanced directives

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

Justice For Girls (2019 Recipient of the R. Paul Kerston Community Educator Award)

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

Topics: teen girls, stereotypes, intersectionality, trust

David Youngson: “I am much more than cancer” (6:17)

David reflects on his experiences and perspective about cancer, including the language used when supporting people with the diagnosis. Most importantly, he shares how he is much more than someone who had cancer.

Topics: cancer; person-centered care; communication

Melanie: Client-Centered Care (4:57)

Melanie discusses the importance of collaboration between members of a healthcare team and actively engaging patients in the process of their care and treatment

Topics: collaboration, effective communication

CJ: A Message (5:01)

CJ shares the importance of collaborative decision making in healthcare to improve the quality of care delivered

Topics: collaborative healthcare, shared decision making, patient empowerment

Mariana de Jager (4:48)

Mariana details what resilience and self-determination mean to her, as an individual with chronic conditions.

Topics: Resiliency, self-determination, empowerment

Stephen Reid (3:53)

Stephen emphasizes the need to treat patients with empathy, respect, and kindness

Topics: Treating others with respect, kindness

The Planetary Health Project – Shane (2:59)

Shane, a traumatic brain injury survivor, discusses his journey experiencing symptoms of depression and how climate change has impacted his mental health.

Topics: traumatic brain injury, depression, climate change

The Planetary Health Project – Michele (3:45)

Michele discusses her experiences with anxiety and depression

Topics: Anxiety, Depression, Forest Fires, Disability

The Planetary Health Project – Katrina (2:11)

Katrina shares her journey experiencing climate anxiety as well as depression

Topics: Climate anxiety, depression

The Planetary Health Project – Sandy (3:47)

Sandy discusses how forest fires have resulted in lifelong symptoms of worsened asthma. Furthermore, Sandy discusses how she has changed her medication regimen in order to reduce negative environmental impacts.

Topics: Asthma, Inhalers, Forest Fires

Patient Experiences Project – Jim and Isabelle (6:58)

Living with a spinal cord injury affects even the most basic parts of your life. Jim and Isabelle give us a window into the changes they had to adapt to in their everyday experience, and the challenges along the way.

Topics: Spinal Cord Injury, Impacts on Daily Living

Patient Experiences Project – Jamie (9:37)

Jamie and her family share the story of Jamie’s recovery from a severe traumatic brain injury after a catastrophic skiing accident.

Topics: Severe Traumatic Brain Injury

Patient Experiences Project – Walt (7:11)

Walt shares his experience living with Type 2 Diabetes Mellitus, what it’s like day to day, and things you don’t always see in the clinic.

Topics: Type 2 Diabetes Mellitus

Caregiver Experiences

Mandy & Sophie: A Caregiver’s Journey Part 1 (1:05) UBC Health Mentor since 2012

Mandy recounts receiving her daughter’s Prader-Willi Syndrome diagnosis on the phone.

Topics: Prader-Willi syndrome, rare diseases, caregiving, diagnosis, breaking bad news

Mandy & Sophie: A Caregiver’s Journey Part 2 (2:53) UBC Health Mentor since 2012

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

Topics: Prader-Willi syndrome, autism, rare diseases, caregiving, collaborative care

Mandy & Hudson (4:32) UBC Health Mentor since 2012 (OT Student Project)

Mandy shares her journey with her child born with Prader-Willi syndrome, highlighting the importance of healthcare support and advocating for families in need.

Topics: Prader-Willi syndrome, rare diseases, advocacy, support networks, schools

Jory & Robin: A Journey with Alzheimer’s Disease (3:57) UBC Health Mentor since 2012

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.

Topics: Alzheimer disease, caregiving, end of life care

Donna: Caring to the End (3:11) End-of-Life Care Panelist 2019

Donna talks about becoming Neil’s caregiver as his ALS deteriorates and leads to his death.

Topics: motor neuron disease, caregiving, end of life care, quality of life

Jory & Donna: The Heart Matters (6:28) UBC Health Mentor since 2012 (OT Student Project)

Jory and Donna highlight caregivers’ extraordinary efforts to understand and care for individuals with disabilities, emphasizing empathy and compassion in caregiving.

Topics: Alzheimer disease, motor neuron disease, caregiving, end of life care, advocacy

Marge & Eric: Collaborative Healthcare with Families (5:11) UBC Health Mentors since 2012

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

Topics: mental health, caregiving, collaborative care, families, burnout

Deb: I’m Just Trying to Keep My Kid Alive Here (11:46) Moms Stop the Harm

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

Topics: substance use, addiction, ADHD, caregiving

Alla: A Caregiver’s Experience (5:00) UBC Health Mentor (OT Student Project)

Alla shares her journey as a caregiver to her two children with complex medical and developmental needs, shedding light on the significance of healthcare support and advocating for immigrant families in similar situations.

Topics: caregiving, stigma, immigrants

Sandra: “Wrap Around Health-Care”(6:04)

Sandra discusses her experience helping a patient receive support services, her role as a caregiver for her mother, and the value of wrap around health services

Topics: support services, caregiving, continuity of care

Tyrone, Lyndon, & Melody Brown (5:29)

Melody provides insight into the challenges that her sons, Tyrone and Lyndon, have faced within the healthcare system as patients with disabilities

Topics: disability, misdiagnosis, stigma

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