Screen questions
Introduction: The purpose of this study is to collect information to help understand the experiences and access to care of individuals with life-limiting illnesses and their unpaid caregivers.
Throughout the questionnaire we will be using the term "serious illness" and by that we are referring to life-limiting illnesses, diseases or conditions that cannot be cured and will ultimately shorten a person’s life.
If you are completing this questionnaire on behalf of someone with a serious illness, please answer the questions based on their experiences.
Do you or does someone you care about have a serious illness?
By “serious illness” we are referring to life-limiting illnesses, diseases or conditions that cannot be cured, get worse over time and will ultimately shorten a person’s life.
Include close family (e.g., children, partner, siblings, parents), friends or community members.
Select all that apply.
- Yes, I have a serious illness
- Yes, someone I care about has or had a serious illness
OR
- No, neither I nor someone I care about has a serious illness
In the past 2 years, have you ever provided unpaid care or support for someone you care about who has a serious illness?
Unpaid care refers to any support or assistance you provide without receiving financial compensation. For example, helping with personal care, managing medications, providing emotional support, assisting with medical appointments or helping with household chores.
Include close family (e.g., children, partner, siblings, parents), friends or community members.
Select all that apply.
- Yes, I am currently providing unpaid care
- Yes, I have provided unpaid care in the last 2 years, but the person has since passed away
- Yes, I have provided unpaid care in the last 2 years, but I no longer do
OR
- No, I have not provided unpaid care for anyone in the last 2 years
Age
What is your age?
Sex and gender
The following questions are about gender and sex at birth.
What is your gender?
[Gender refers to an individual’s personal and social identity as a man, a woman or a person who is not exclusively a man or a woman, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a boy, a girl or a person who is not exclusively a boy or a girl, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a man (or a boy), a woman (or a girl) or a person who is not exclusively a man (or a boy) or a woman (or a girl), for example, non-binary, agender, gender fluid, queer or Two-Spirit.]
Is it:
- [Man/Boy/Man (or boy)]
- [Woman/Girl/Woman (or girl)]
- Or please specify
What was your sex at birth?
Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.
Please verify that all of the information is correct.
If all the information is correct, press the Next button.
To make changes, press the Previous button.
Your information
Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]
Sex at birth: [Male/Female/Information not provided]
Postal code
To determine which geographic region you live in, provide your postal code.
- Postal code
Example: A9A 9A9
Dwelling type
What type of dwelling are you currently living in?
- Private home or apartment
- Retirement home or senior residence
a retirement home is a privately paid residency for seniors who can direct their own care but may need a bit more support with their daily living activities.
- Long-term care facility or nursing home
long-term care facilities or nursing homes provide living accommodation for people who require on-site delivery of 24 hour, 7 days a week supervised care.
- Unstable or temporary living situation
- Homeless
- Other
- Please specify type of dwelling
Assessment
Next, a few questions to understand your care needs.
What serious illness are you living with that impacts you the most?
- Advanced cancer
- Chronic liver disease
- Chronic obstructive pulmonary disease (COPD) or other chronic lung condition
e.g., cystic fibrosis, pulmonary hypertension, tuberculosis
- Dementia or Alzheimer's disease
- Heart disease or failure
- Human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS)
- Kidney failure
- Multiple organ failure
- Neurological disease
e.g., amyotrophic lateral sclerosis (ALS), Lou Gehrig’s disease, multiple sclerosis, Parkinson’s disease, Huntington’s disease
- Stroke or cerebrovascular disease
- Weakened immune system or immunocompromised
- Other
- Please specify the serious illness
Now some questions about primary healthcare. This is the type of healthcare usually delivered by family doctors or nurse practitioners who provide continuous care, are familiar with your medical history, and with whom you can book regular appointments. It is often the first point of entry to the Canadian health system.
Primary healthcare needs can include routine care such as check-ups and prescription refills as well as issues that need immediate care but are not emergencies, such as an infection, fever, headache, a sprained ankle, vomiting or an unexplained rash.
Patients sometimes have a care team which can include different healthcare professionals, as well as unpaid caregivers such as family, friends or community members.
Do you have a regular primary healthcare provider?
By this, we mean a health professional that you regularly consult with when you need care or advice for your health.
Select all that apply.
- Yes, a family doctor
- Yes, a nurse practitioner
- Yes, a palliative care specialist
- Yes, another specialist
- Yes, another health professional
- Specify the other health professional
OR
- No
Is someone from your care team regularly completing a needs assessment for you?
A needs assessment is an evaluation of your health status, risks and needs.
A care team includes the care you receive from healthcare professionals, as well as the support you get from unpaid helpers like family or friends.
Which of the following needs are being assessed by someone from your care team?
Select all that apply.
- Physical
- Psychological
- Social
Include social support from family members or friends.
- Cultural
- Legal
- Spiritual
- End-of-life
- Loss or grief
- Other
Which conditions related to your serious illness limit your daily activities the most?
Select up to 3 answers.
- Physical limitations
e.g., difficulty walking, using stairs, using your hands or fingers, problems with sight or hearing or doing other physical activities
- Severe pain
- Fatigue
- Trouble breathing
- Problems communicating
- Lack of appetite or nausea
- Cognitive limitations
e.g., difficulty learning, remembering or concentrating
- Mental health conditions
e.g., anxiety, depression, substance abuse
- Other
- Please specify the condition
OR
- None of the above
Planning
Now, a few questions to understand how your wishes, values and beliefs are reflected within the management of your illness and care planning.
Have you engaged in conversations with someone from your care team about your wishes, values and beliefs regarding care for your serious illness?
For example, conversations may include discussions about where you would like to receive care, your treatment plan, pain management preferences, etc.
A care team may include healthcare professionals as well as unpaid helpers, like family or friends.
What topics did you discuss?
Select all that apply.
- Setting of care
e.g., home, hospice, hospital, specialized care centre
- Treatment plan
e.g., types of treatments, specific instructions for future care
- Life-sustaining treatment options
e.g., resuscitation, ventilators, feeding tubes
- Pain management preferences
- Legal and financial matters
- Spiritual considerations
- Place of end-of-life care
e.g., home, hospice, hospital
- Organ and tissue donation
- Funeral or memorial preferences
- Other
- Please specify topics discussed
Have you chosen someone to be your substitute decision-maker?
A substitute decision-maker is the person who will make decisions about your care and treatments on your behalf only if you are incapable of doing so on your own. Depending on where you live in Canada, this person can also be called a medical proxy, health representative or agent or power of attorney for personal care.
How confident are you that your substitute decision-maker has the information they need to make decisions on your behalf?
- Very confident
- Somewhat confident
- Not very confident
- Not confident at all
Have you had discussions with your healthcare providers about your goals of care?
Goals of care are your overall priorities and health expectations for care based on your personal values, wishes, beliefs and perception of quality of life.
How helpful were these discussions in understanding the treatment and care options available to you?
- Very helpful
- Somewhat helpful
- Not very helpful
- Not at all helpful
Did you experience any of the following challenges expressing your wishes to your healthcare providers?
Select all that apply.
- Lack of knowledge about my condition
- Not enough time during appointments
- Language differences
- Cultural differences
- Fear of being judged or misunderstood
- Uncertainty about treatment options
- Lack of privacy during appointments
- Difficulty understanding medical terms
- Discomfort discussing certain topics
e.g., end-of-life care, mental health
- Trust issues with healthcare team
- Inadequate support for decision-making
- Other
- Please specify challenges
OR
- No, I have not experienced challenges
OR
- Not applicable
Overall, to what extent do you feel your healthcare providers respect your care goals and wishes?
- To a large extent
- To a moderate extent
- Not at all
- Not applicable
Care team
The following questions ask about aspects of both your health and social care.
This includes the care you receive from healthcare professionals, both public and private, as well as the support you get from unpaid helpers like family or friends.
Who would you say is providing support and care to you for your serious illness?
Select all that apply.
- Community volunteers
- Family doctor
- Family or friends
- Nurses or nurse practitioner
- Palliative care specialist
- Personal support workers
e.g., home support worker or healthcare aide
- Psychologists
- Social workers
- Specialists
- Spiritual advisors
- Other
- Please specify the person who provides support and care
OR
- I don’t have a care provider
Who is most responsible for managing and coordinating your care and treatment?
This includes monitoring your treatment and care plans and facilitating communication between the various teams providing treatment and care.
- Myself
- Community volunteers
- Family doctor
- Family or friends
- Nurses or nurse practitioner
- Palliative care specialist
- Personal support workers
- Psychologists
- Social workers
- Specialists
- Spiritual advisors
- Other
- Please specify person most responsible
- No one
Please indicate your level of agreement with the following statements.
- My care team works well together
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- My care team helps improve my quality of life
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- My care team addresses my concerns
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- My healthcare providers collaborate well with me, my family and caregivers
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Management of pain and other symptoms
In this section we will ask about the pain and other symptom management that you receive related to your serious illness.
What symptoms are you experiencing that are the most concerning to you?
Select top three.
- Agitation
- Anxiety
- Changes in breathing patterns
- Constipation
- Dehydration
- Delirium
- Depression
- Diarrhea
- Dyspnea (shortness of breath)
- Fatigue
- Trouble sleeping
- Weakness
- Confusion
- Nausea
- Pain
- Poor appetite
- Vomiting
- Other
- Please specify the most concerning symptoms
Overall, how satisfied are you with the support you are receiving to manage your pain and other symptoms?
- Very satisfied
- Somewhat satisfied
- Not very satisfied
- Not satisfied at all
Which challenges have you encountered accessing necessary treatments or medications for pain and symptom management?
Select all that apply.
- Cost and insurance issues
- Availability
e.g., medications or treatments were not available or in stock
- Distance
e.g., travelling distance to get to appointments or to access care services
- Wait times, referral issues and appointment availability
- My lack of knowledge
- Communication and language barrier
- Other
- Please specify challenges
OR
- I have not experienced any challenges in access
To what extent have these challenges affected your access and choices for care?
- Significantly affected
- Moderately affected
- Slightly affected
- Not at all affected
Comprehensive supportive care
In addition to addressing physical needs, it is important that those with a serious illness receive timely support for their mental, emotional, social, cultural and spiritual needs.
Please indicate your level of agreement with the following statements.
Note: Press the help button (?) for additional information.
- I feel comfortable sharing my psychological needs with my healthcare team
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- I often feel isolated from others
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- I often experience emotional distress, anxiety or deep sadness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- My cultural background and beliefs are considered and respected in my care
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- I have access to spiritual support that aligns with my beliefs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- I feel connected and supported by my community and social groups
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- I receive adequate support in coping with the challenges of my illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Timely access
In this section, we will ask about how long it takes you to access the care you need.
Please indicate your level of agreement with the following statements.
- In general, I have timely access to the care services that I need
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- Care services are hard to access outside of regular hours (e.g., overnight, weekends or holidays)
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- Overall, the wait times between when I need and receive care are reasonable
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Which services do you have difficulty accessing at the time you need it?
Select all that apply.
- Advance care planning
- Care coordination
- Grief support
- Medical equipment or supplies
- Mental health care
- Nutritional guidance
- Occupational therapy
- Pain and symptom management
- Personal care
e.g., bathing, dressing, feeding
- Physiotherapy
- Referral to specialists
- Spiritual care
- Respite care for caregivers
- Other
OR
- I do not have difficulty accessing these services
What factors impact your ability to access care promptly?
Select all that apply.
- Distance from care services
- Lack of transportation or challenges with transportation
- Availability of care providers or specialists
- Availability of services in my preferred care setting
- Lack of information about available care
- Financial constraints
e.g., lack of insurance coverage
- Communication barriers
e.g., language or cultural barriers
- Difficulty navigating the healthcare system
- Other
Have there been situations where the lack of timely support for your serious illness led to complications?
Did these complications with your serious illness lead to going to the emergency room (ER)?
In the last 12 months, how many times have you visited the emergency room (ER)?
Transitions in care setting
For the next set of questions we will ask about transitions in care. "Transitions in Care" refers to the process where an individual changes where they received care and who provides that care.
“Care Setting” refers to the location where the patient receives care. Examples of care settings include doctor’s office or clinic, home, hospital, hospice or long-term care facilities.
Have you experienced transitions in care settings?
What prompted these transitions?
Select all that apply.
- Change in care needs
- Cost issues
- Proximity to family or caregivers
- Access to specialized care
- Other
- Please specify what prompted the transitions
Overall, how would you describe your experiences transitioning between care settings?
- Very easy
- Somewhat easy
- Somewhat difficult
- Very difficult
How well have your preferences for the setting of care been respected and accommodated?
- Completely respected
- Partially respected
- Not respected at all
In your experience with transitioning between care settings, what challenges have you faced?
Select all that apply.
- Coordination difficulties
e.g., delayed transfers, missing medical records, disrupted care continuity
- Cost issues
- Emotional and support challenges
e.g., stress, lack of support, difficulty adapting to new routines
- Information and communication barriers
e.g., unclear information, missed services like counselling or medications
- Physical and accessibility issues
e.g., transportation difficulties, inaccessible facilities, mobility challenges
- Other
- Please specify challenges
OR
- No challenges encountered
Services received at home
The following questions aim to understand your preferences and experiences in receiving care at home from professionals.
Home care services are professional support services that may assist with daily activities, medical care, mental health services, and more.
Overall, how satisfied are you with the care services you receive at home?
- Very satisfied
- Somewhat satisfied
- Somewhat dissatisfied
- Very dissatisfied
- I do not receive any care services at home
Which of the following services received at home were you most satisfied with?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
- Social work
- Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- Not satisfied with any services I receive
Which of the following services received at home were you least satisfied with?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
- Social work
- Medical equipment or supplies
e.g., wheelchair, homecare bed, oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- Satisfied with all services I receive
For which reasons were you dissatisfied with these services?
Select all that apply.
- Services needed not available in my area
- Poor quality
e.g., concerns about provider competence, reliability of services
- Services did not address my needs
- I could not access enough services to meet my needs
- Long wait times to receive services
- Cost was too high
- There was a language barrier
- Other
Which of the following services were you unable to access at home?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
- Social work
- Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- I was able to access all services at home
OR
- I did not try to access these services at home
For what reasons have you been unable to access these services at home?
Select all that apply.
- Services needed not available in my area
- Cost was too high
- Lack of knowledge about available services or how to access them
- Healthcare provider did not recommend the service for me
- I am not eligible for funded home services
- Scheduling issues
- Spatial or access limitations of my home
- Cultural or language barriers
e.g., services available do not accommodate my cultural or linguistic needs
- Transportation issues
- Quality concerns
- Privacy concerns
- Other
OR
- I did not want to access services at my home
OR
- I did not need these services at my home
Preferred setting of end-of-life care
“End-of-life care” refers to care provided during the final stages of a serious illness.
“Setting of Care” in this context refers to the preferred location for end-of-life care, chosen by the patient, their family and healthcare professionals. This choice, influenced by various circumstances, aims to respect the patient’s wishes while providing necessary care. Examples of possible settings include home, hospice, hospital or long-term care facilities.
Have you had discussions with your healthcare providers about your preferred setting for end-of-life care?
Where is your preferred setting for end-of-life care?
- Private home or apartment
- Hospice
a special facility for people living with a serious illness who are nearing the end of life
- Hospital
- Seniors’ residence
- Long-term care facility
- Assisted living facility
- I don’t have one
- I don’t know
- Other
- Please specify your preferred setting
What is most important to you when choosing your setting for end-of-life care?
Select top three.
- Severity of medical condition
- Pain and other symptom management
e.g., whether symptoms are under control
- Availability of professional assistance
- Availability of informal assistance
e.g., family, friends or community members
- Access to urgent care or specialists
- Finances
- Personal wishes
- Family considerations
- Social connections
- Spiritual or cultural considerations
- Other
Overall, how much does access to care impact your choice of settings for end of life?
- To a large degree
- To some degree
- To a small degree
- Not at all
Caregiver support
This section is designed to understand the support your primary caregiver provided to you and the support they received in caring for you during your serious illness. If you have had more than one caregiver, please focus your responses on your experience with your primary caregiver.
Do you have an unpaid caregiver?
A caregiver is someone who provides unpaid care and support to you in a nonprofessional capacity, such as a family member or a friend. Types of support may include personal care, help with household activities, transportation, etc.
What is your primary caregiver’s relationship to you?
They are:
- My spouse or common-law partner
- My partner
- My child
- My grandchild
- My parent
- My sibling
- My friend
- My neighbour or community member
- Other
- Please specify their relationship to you
What is their age?
What is their gender?
[Gender refers to an individual’s personal and social identity as a man, a woman or a person who is not exclusively a man or a woman, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a boy, a girl or a person who is not exclusively a boy or a girl, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a man (or a boy), a woman (or a girl) or a person who is not exclusively a man (or a boy) or a woman (or a girl), for example, non-binary, agender, gender fluid, queer or Two-Spirit.]
Is it:
- [Man/Boy/Man (or boy)]
- [Woman/Girl/Woman (or girl)]
- Or please specify
How long has your unpaid caregiver been supporting you?
- Less than 6 months
- 6 months to less than a year
- 1 to 2 years
- More than 2 years
Does your unpaid caregiver usually live with you?
What kinds of care does your unpaid caregiver provide for you?
Select all that apply.
- Personal care
e.g., dressing, bathing, toileting
- Medical care
e.g., help taking medicine, wound care
- Managing care
e.g., making appointments, communicating with healthcare providers
- Help with household activities
e.g., housework, home maintenance, outdoor work
- Transportation
e.g., to appointments, for errands
- Meal preparation, help with eating or having food delivered
- Banking, paying bills or preparing taxes
- Psychological, spiritual and emotional support
e.g., social visits, outings
- Financial support to help pay for services
- Other
- Please specify the kind of care they provide
Sources of information
The following questions aim to understand where you find information about your serious illness, resources and support.
Have any of your healthcare providers provided you with helpful sources of information (e.g., brochures, websites, support groups) for your serious illness and your care options?
Do you feel you have had sufficient opportunities to discuss and ask questions about your illness and care with your healthcare providers?
Have your caregivers and family members been provided with necessary information about your serious illness and care options?
Besides healthcare providers, where else did you seek information for the care and support you needed for your serious illness?
Select all that apply.
- Local, provincial or national organizations
- International organizations or resources
- Internet search
e.g., Google
- Health-specific websites or online forums
- Social media, blogs or vlogs
- Family, friends or community members
- Traditional media
e.g., books, magazines, TV, radio
- Educational institutions
- Spiritual groups
- Other
- Please specify sources of information
OR
- I did not seek additional information
Cultural considerations
The following questions aim to understand your unique experiences, preferences and challenges in respect to your culture or spirituality while receiving care for your serious illness.
Overall, how comfortable are you discussing your cultural needs with your care providers?
- Very comfortable
- Somewhat comfortable
- Not comfortable
- Not comfortable at all
- Not applicable
Overall, how would you describe the care providers' sensitivity to your cultural needs?
Cultural sensitivity is awareness and respect for another’s cultural beliefs, values and practices.
- Very culturally sensitive
- Somewhat culturally sensitive
- Not very culturally sensitive
- Not culturally sensitive at all
- Not applicable
What types of cultural or spiritual misunderstandings or barriers have you encountered?
Select all that apply.
- Difficulties related to language or communication
- Differences in care approach due to cultural expectations or beliefs
- Dietary or food-related
- Misinterpretation of cultural or spiritual rituals or practices
- Lack of accommodation or privacy to carry out cultural practices
- Inappropriate remarks or behaviour
- Other
- Please specify types of misunderstandings or barriers
OR
- I have not encountered any types of cultural or spiritual misunderstandings
Palliative care
Palliative care is a relatively new field of medicine that takes a holistic approach to caring for those living with a serious illness.
It encompasses much of the care already asked about in this questionnaire, from pain and symptom management to emotional and spiritual needs and aims to consider the individual needs of each person living with a serious illness and their families and loved ones.
It can begin as soon as an illness is diagnosed, and it can be provided at the same time as someone is receiving treatments aimed at curing their illness.
Next are a few questions regarding palliative care.
Which of the following professionals have spoken with you about palliative care?
Note: Press the help button (?) for additional information.
Select all that apply.
- Family doctor or nurse practitioner
- Palliative care specialist
- Other medical specialist
- Social worker
- Psychologist
- Patient advocate
- Other
- Please specify the professional
OR
- No one has spoken to me about palliative care
Considering the definition provided, to what degree would you say you have received a palliative approach to your care?
A palliative approach is a specialized form of medical care for people with serious illnesses. It focuses on providing relief from symptoms and concerns, with the goal of improving quality of life for both the person with a serious illness and their family and caregivers. It is a holistic approach that addresses physical, emotional, social and spiritual needs and can be provided alongside treatment for the serious illness.
- To a large degree
- To some degree
- To a small degree
- Not at all
Please indicate your level of agreement with the following statements.
- I began receiving palliative care early in the progression of my disease
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- The people I am close to have received support to help them cope with my illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- My care is coordinated across medical, social and psychological needs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- The care I received for my serious illness has improved my mental health
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- I am supported by a team who are focused on my well-being
- Strongly agree
- Agree
- Disagree
- Strongly disagree
Palliative care aims to improve the quality of life for those living with a serious illness, their unpaid caregivers and family members by providing holistic care focused on individual needs and wishes.
Quality of life encompasses many aspects of life that contribute to well-being, including physical and mental health, personal beliefs, social relationships and other factors such as where we live.
With this in mind, please answer the following question:
To what extent has the care you have received for your serious illness affected your overall quality of life?
- Improved significantly
- Improved somewhat
- No change
- Declined somewhat
- Declined significantly
Main activity
During the past 12 months, what was your main activity?
If the main activity was “sickness” or “short-term illness”, indicate the usual main activity.
Was it:
- Working at a paid job or business
- Vacation from paid work
- Looking for paid work
- Going to school, including vacation from school
- Caring for children
- Household work
- Retired
- Maternity, paternity or parental leave
- Long term illness
- Volunteering
- Care-giving other than for children
- Other
Education
What is the highest certificate, diploma or degree that you have completed?
- Less than high school diploma or its equivalent
- High school diploma or a high school equivalency certificate
- Trades certificate or diploma
- College, CEGEP or other non-university certificate or diploma (other than trades certificates or diplomas)
- University certificate or diploma below the bachelor’s level
- Bachelor’s degree
e.g., B.A., B.A. (Hons), B.Sc., B.Ed., LL.B.
- University certificate, diploma or degree above the bachelor’s level
Sexual orientation
This question collects information on sexual orientation to inform health programs that promote equitable access and treatment for individuals living with a serious illness in Canada.
What is your sexual orientation?
Sexual orientation refers to how a person describes their sexuality.
- Heterosexual (i.e., straight)
- Lesbian or gay
- Bisexual or pansexual
- Or please specify
- Specify your sexual orientation:
Martial status
What is your marital status?
Is it:
- Married
For Quebec residents only, select the "Married" category if your marital status is "civil union".
- Living common law
Two people who live together as a couple but who are not legally married to each other.
- Never married (Not living common law)
- Separated (Not living common law)
- Divorced (Not living common law)
- Widowed (Not living common law)
Indigenous identity
Are you First Nations, Métis or Inuk (Inuit)?
First Nations (North American Indian) includes Status and Non-Status Indians.
If "Yes", select the responses that best describes this person now.
- No, not First Nations, Métis or Inuk (Inuit)
OR
- Yes, First Nations (North American Indian)
- Yes, Métis
- Yes, Inuk (Inuit)
Sociodemographic characteristics
The following question collects information in accordance with the Employment Equity Act and its Regulations and Guidelines to support programs that promote equal opportunity for everyone to share in the social, cultural, and economic life of Canada.
Select all that apply.
Are you:
- White
- South Asian
e.g., East Indian, Pakistani, Sri Lankan
- Chinese
- Black
- Filipino
- Arab
- Latin American
- Southeast Asian
e.g., Vietnamese, Cambodian, Laotian, Thai
- West Asian
e.g., Iranian, Afghan
- Korean
- Japanese
- Other
Place of birth, immigration and citizenship
Where were you born?
- Born in Canada
- Born outside Canada
Are you a Canadian citizen?
- Yes, a Canadian citizen by birth
- Yes, a Canadian citizen by naturalization (Canadian citizen by naturalization refers to an immigrant who was granted citizenship of Canada under the Citizenship Act.)
- No, not a Canadian citizen
Are you a landed immigrant or permanent resident?
A landed immigrant or permanent resident is a person who has been granted the right to live in Canada permanently by immigration authorities.
In what year did you first become a landed immigrant or a permanent resident?
If exact year is not known, enter best estimate.
Language
Can you speak English or French well enough to conduct a conversation?
- English only
- French only
- Both English and French
- Neither English nor French
Total income
Now a question about total household income.
What is your best estimate of your total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?
Income can come from various sources such as from work, investments, pensions, or government. Examples include Employment Insurance, social assistance, child benefits and other income such as child support, spousal support (alimony) and rental income.
Capital gains should not be included in the household income.
- Rounded to the nearest CAN$
What is your best estimate of your total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?
- Less than $20,000
- $20,000 to less than $40,000
- $40,000 to less than $60,000
- $60,000 to less than $80,000
- $80,000 to less than $100,000
- $100,000 to less than $150,000
- $150,000 and over
Open-ended question
Do you have any further concerns about your care regarding your serious illness now or in the future, that have not been covered by this questionnaire? If yes, please let us know what they are below.
Caregiver age
What is your age?
Caregiver sex and gender
The following questions are about gender and sex at birth.
What is your gender?
[Gender refers to an individual’s personal and social identity as a man, a woman or a person who is not exclusively a man or a woman, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a boy, a girl or a person who is not exclusively a boy or a girl, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a man (or a boy), a woman (or a girl) or a person who is not exclusively a man (or a boy) or a woman (or a girl), for example, non-binary, agender, gender fluid, queer or Two-Spirit.]
Is it:
- [Man/Boy/Man (or boy)]
- [Woman/Girl/Woman (or girl)]
- Or please specify
What was your sex at birth?
Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.
Please verify that all of the information is correct.
If all the information is correct, press the Next button.
To make changes, press the Previous button.
Your information
Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]
Sex at birth: [Male/Female/Information not provided]
Information of the person living with a serious illness
We will now ask you some questions regarding the person you are currently providing unpaid care for, or the last person for whom you have provided unpaid care in relation to a serious illness. If you are currently providing unpaid care for more than one person, please consider the person you usually provide the most hours of unpaid care for.
To facilitate the flow of the questionnaire, questions regarding the person being cared for will be asked using the past tense.
In order to personalize the survey, could you please provide the first name of the person you cared for?
Note: If you prefer not to provide the person's real first name, you can use a pseudonym or a number, as the first name is only used as a reference for the questions that follow.
What was your relationship with [Patient Name]?
I was:
- Their spouse or common-law partner
- Their partner
- Their child
- Their grandchild
- Their parent
- Their sibling
- Their friend
- Their neighbour or community member
- Other
- Please specify your relationship with [Patient Name]
Age of the person living with a serious illness
What was [Patient Name]'s age?
Gender of the person living with a serious illness
What was [Patient Name]'s gender?
[Gender refers to an individual’s personal and social identity as a man, a woman or a person who is not exclusively a man or a woman, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a boy, a girl or a person who is not exclusively a boy or a girl, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a man (or a boy), a woman (or a girl) or a person who is not exclusively a man (or a boy) or a woman (or a girl), for example, non-binary, agender, gender fluid, queer or Two-Spirit.]
Was it:
- [Man/Boy/Man (or boy)]
- [Woman/Girl/Woman (or girl)]
- Or please specify
- Specify [Patient Name]'s gender
What was [Patient Name]'s sex at birth?
Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.
Please verify that all of the information is correct.
If all the information is correct, press the Next button.
To make changes, press the Previous button.
[Patient Name]'s information
Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]
Sex at birth: [Male/Female/Information not provided]
Postal code of the person living with a serious illness
To determine which geographic region [Patient Name] lived in, provide their postal code.
- Postal code
Example: A9A 9A9
Dwelling type
What type of dwelling was [Patient Name] living in?
- Private home or apartment
- Retirement home or senior residence
a retirement home is a privately paid residency for seniors who can direct their own care but may need a bit more support with their daily living activities
- Long-term care facility or nursing home
long-term care facilities or nursing homes provide living accommodation for people who require on-site delivery of 24 hour, 7 days a week supervised care
- Unstable or temporary living situation
- Homeless
- Other
- Please specify type of dwelling
Assessment
Next, a few questions to understand the care needs of [Patient Name].
What serious illness was [Patient Name] living with that impacted them the most?
- Advanced cancer
- Chronic liver disease
- Chronic obstructive pulmonary disease (COPD) or other chronic lung condition
e.g., cystic fibrosis, pulmonary hypertension, tuberculosis
- Dementia or Alzheimer’s disease
- Heart disease or failure
- Human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS)
- Kidney failure
- Multiple organ failure
- Neurological disease
e.g., amyotrophic lateral sclerosis (ALS), Lou Gehrig’s disease, multiple sclerosis, Parkinson’s disease, Huntington’s disease
- Stroke or cerebrovascular disease
- Weakened immune system or immunocompromised
- Other
- Please specify the serious illness
Now some questions about primary healthcare. This is the type of healthcare usually delivered by family doctors or nurse practitioners who provide continuous care, are familiar with your medical history, and with whom you can book regular appointments. It is often the first point of entry to the Canadian health system.
Primary healthcare needs can include routine care such as check-ups and prescription refills as well as issues that need immediate care but are not emergencies, such as an infection, fever, headache, a sprained ankle, vomiting or an unexplained rash.
Patients sometimes have a care team which can include different healthcare professionals, as well as unpaid caregivers such as family, friends or community members.
Did [Patient Name] have a regular primary healthcare provider?
By this, we mean a health professional they regularly consulted with when they needed care or advice for their health.
Select all that apply.
- Yes, a family doctor
- Yes, a nurse practitioner
- Yes, a palliative care specialist
- Yes, another specialist
- Yes, another health professional
- Specify the other health professional
OR
- No
Was someone from [Patient Name]'s care team regularly completing a needs assessment for them?
A needs assessment is an evaluation of your health status, risks and needs.
A care team includes the care you receive from healthcare professionals, as well as the support you get from unpaid helpers like family or friends.
Which of the following needs were being assessed by someone from [Patient Name]s care team?
Select all that apply.
- Physical
- Psychological
- Social
Include social support from family members or friends.
- Cultural
- Legal
- Spiritual
- End-of-life
- Loss or grief
- Other
Which conditions related to [Patient Name]'s serious illness limited their daily activities the most?
Select up to 3 answers.
- Physical limitations
e.g., difficulty walking, using stairs, using their hands or fingers, problems with sight or hearing or doing other physical activities
- Severe pain
- Fatigue
- Trouble breathing
- Problems communicating
- Lack of appetite or nausea
- Cognitive limitations
e.g., difficulty learning, remembering or concentrating
- Mental health conditions
e.g., anxiety, depression, substance abuse
- Other
- Please specify the condition
OR
- None of the above
Planning
Now, a few questions to understand how [Patient Name]'s wishes, values and beliefs were reflected within the management of their illness and care planning.
Did [Patient Name] engage in conversations with someone from their care team about their wishes, values and beliefs regarding care for their serious illness?
For example, conversations may have included discussions about where they liked to receive care, their treatment plan, pain management preferences, etc.
A care team may include healthcare professionals as well as unpaid helpers, like family or friends.
What topics were discussed?
Select all that apply.
- Setting of care
e.g., home, hospice, hospital, specialized care centre
- Treatment plan
e.g., types of treatments, specific instructions for future care
- Life-sustaining treatment options
e.g., resuscitation, ventilators, feeding tubes
- Pain management preferences
- Legal and financial matters
- Spiritual considerations
- Place of end-of-life care
e.g., home, hospice, hospital
- Organ and tissue donation
- Funeral or memorial preferences
- Other
- Please specify topics discussed
Did [Patient Name] select a substitute decision-maker?
A substitute decision-maker is the person who makes decisions about care and treatments on behalf of a person who is seriously ill, only if they are incapable of doing so on their own. Depending on where you live in Canada, this person can also be called a medical proxy, health representative or agent or power of attorney for personal care.
- Yes, I was the substitute decision-maker
- Yes, myself and someone else were the substitute decision-makers
- Yes, they had a different substitute decision-maker
- No
- I don’t know
How confident are you that you had the information you needed to make decisions on [Patient Name]'s behalf?
- Very confident
- Somewhat confident
- Not very confident
- Not confident at all
Did [Patient Name] have discussions with their healthcare providers about their goals of care?
Goals of care are your patients' priorities and health expectations for care based on their personal values, wishes, beliefs and perception of quality of life.
How helpful were these discussions in understanding the treatment and care options available to [Patient Name]?
- Very helpful
- Somewhat helpful
- Not very helpful
- Not at all helpful
Did [Patient Name] experience any challenges expressing their wishes to their healthcare providers?
Select all that apply.
- Their lack of knowledge about their condition
- Not enough time during appointments
- Language differences
- Cultural differences
- Fear of being judged or misunderstood
- Uncertainty about treatment options
- Lack of privacy during appointments
- Difficulty understanding medical terms
- Discomfort discussing certain topics
e.g., end-of-life care, mental health
- Trust issues with healthcare team
- Inadequate support for decision-making
- Other
- Please specify challenges
OR
- No, they did not experience challenges
OR
- Not applicable
Overall, did you feel [Patient Name]'s healthcare providers respected their care goals and wishes?
- Yes, to a large extent
- Yes, to a moderate extent
- No, not at all
- Not applicable
Care team
The following questions ask about aspects of both [Patient Name]'s health and social care.
This includes the care you receive from healthcare professionals, both public and private, as well as the support you get from unpaid helpers like family or friends.
Besides you, who would you say provided support and care to [Patient Name] for their serious illness?
Select all that apply.
- Community volunteers
- Family doctor
- Family or friends
- Nurses or nurse practitioner
- Palliative care specialist
- Personal support workers
e.g., home support worker or healthcare aide
- Psychologists
- Social workers
- Specialists
- Spiritual advisors
- Other
- Please specify the person who provided support and care
OR
- Only myself
Who was most responsible for managing and coordinating [Patient Name]'s care and treatment?
This includes monitoring their treatment and care plans and facilitating communication between the various teams providing treatment and care.
- [Patient Name]
- Myself
- Community volunteers
- Family doctor
- Family or friends
- Nurses or nurse practitioner
- Palliative care specialist
- Personal support workers
- Psychologists
- Social workers
- Specialists
- Spiritual advisors
- Other
- Please specify person most responsible
- No one
Please indicate your level of agreement with the following statements.
- [Patient Name]'s care team worked well together
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name]'s care team helped improve their quality of life
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name]'s care team addressed their concerns
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- Healthcare providers collaborated well with [Patient Name], their family and their caregivers
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Management of pain and other symptoms
In this section we will ask about the pain and other symptom management that [Patient Name] has received related to their serious illness.
What were the most concerning symptoms for [Patient Name]?
Select top three.
- Agitation
- Anxiety
- Changes in breathing patterns
- Constipation
- Dehydration
- Delirium
- Depression
- Diarrhea
- Dyspnea (shortness of breath)
- Fatigue
- Trouble sleeping
- Weakness
- Confusion
- Nausea
- Pain
- Poor appetite
- Vomiting
- Other
- Please specify the most concerning symptoms
Overall, how satisfied was [Patient Name] with the support they received to manage their pain and other symptoms?
- Very satisfied
- Somewhat satisfied
- Not very satisfied
- Not satisfied at all
- Not applicable
From your experience, did [Patient Name] face any challenges in accessing necessary treatments or medications for pain and symptom management?
Select all that apply.
- Cost and insurance issues
- Availability
e.g., medications or treatments were not available or in stock
- Distance
e.g., travelling distance to get to appointments or to access care services
- Wait times, referral issues, and appointment availability
- Lack of knowledge
- Communication and language barrier
- Other
- Please specify challenges
OR
- [Patient Name] did not experience any challenges in access
To what extent have these challenges affected [Patient Name]’s access and choices for care?
- Significantly affected
- Moderately affected
- Slightly affected
- Not at all affected
Comprehensive supportive care
In addition to addressing physical needs, it is important that those with a serious illness receive timely support for their mental, emotional, social, cultural and spiritual needs.
Please indicate your level of agreement with the following statements.
Note: Press the help button (?) for additional information.
- [Patient Name] felt comfortable sharing their psychological needs with their healthcare team
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name] often felt isolated from others
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name] often experienced emotional distress, anxiety, or deep sadness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name]’s cultural background and beliefs were considered and respected in their care
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name] had access to spiritual support that aligned with their beliefs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name] felt connected and supported by their community and social groups
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- [Patient Name] received adequate support in coping with the challenges of their illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Timely access
In this section, we will ask about how long it took [Patient Name] to access the care they needed.
Please indicate your level of agreement with the following statements.
- In general, [Patient Name] had timely access to the care services they needed
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- Care services were hard to access outside of regular hours (e.g., overnight, weekends or holidays)
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
- Overall, the wait times between when [Patient Name] needed and received care were reasonable
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Which services has [Patient Name] had difficulty accessing at the time they needed it?
Select all that apply.
- Advance care planning
- Care coordination
- Grief support
- Medical equipment or supplies
- Mental health care
- Nutritional guidance
- Occupational therapy
- Pain and symptom management
- Personal care
e.g., bathing, dressing, feeding
- Physiotherapy
- Referral to specialists
- Spiritual care
- Respite care for caregivers
- Other
OR
- [Patient Name] did not have difficulty accessing these services
What factors impacted [Patient Name]’s ability to access care promptly?
Select all that apply.
- Distance from care services
- Lack of transportation or challenges with transportation
- Availability of care providers or specialists
- Availability of services in [Patient Name]’s preferred care setting
- Lack of information about available care
- Financial constraints
e.g., lack of insurance coverage
- Communication barriers
e.g., language or cultural barriers
- Difficulty navigating the healthcare system
- Other
Were there situations where the lack of timely support in [Patient Name]’s serious illness led to complications?
Did these complications with [Patient Name]’s serious illness lead to going to the emergency room (ER)?
In the last 12 months, how many times did [Patient Name] visit the emergency room (ER)?
[Please report for the last 12 months before they passed away.]
Transitions in care settings
For the next questions we will ask question about transitions in care. "Transitions in Care" refers to the process where an individual changes where they received care and who provides that care.
“Care Setting” refers to the location where the patient receives care. Examples of care settings include doctor’s office or clinic, home, hospital, hospice or long-term care facilities.
Did [Patient Name] experience transitions in care settings?
What prompted these transitions?
Select all that apply.
- Change in care needs
- Cost issues
- Proximity to family or caregivers
- Access to specialized care
- Other
- Please specify what prompted these transitions
From your perspective, how would you describe [Patient Name]'s overall experiences transitioning between care settings?
- Very easy
- Somewhat easy
- Somewhat difficult
- Very difficult
How well were [Patient Name]’s preferences for the setting of care respected and accommodated?
- Completely respected
- Partially respected
- Not respected at all
- I don't know
In your experience with [Patient Name]’s transitioning between care settings, what challenges did they face?
Select all that apply.
- Coordination difficulties
e.g., delayed transfers, missing medical records, disrupted care continuity
- Cost issues
- Emotional and support challenges
e.g., stress, lack of support, difficulty adapting to new routines
- Information and communication barriers
e.g., unclear information, missed services like counselling or medications
- Physical and accessibility issues
e.g., transportation difficulties, inaccessible facilities, mobility challenges
- Other
- Please specify challenges
OR
- No challenges encountered
Services received at home
The following questions aim to understand [Patient Name]’s preferences and experiences in receiving care at home.
Home care services are professional support services that may assist with daily activities, medical care, mental health services, and more.
Overall, how satisfied was [Patient Name] with the care services they received at home?
- Very satisfied
- Somewhat satisfied
- Somewhat dissatisfied
- Very dissatisfied
- [Patient Name] did not receive any care services at home
Which of the following services received at home was [Patient Name] most satisfied with?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., Physiotherapy, Occupational therapy, Speech therapy, Dietitian or nutritionist services
- Social work
- Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- [Patient Name] was not satisfied with any services they received
Which of the following services received at home was [Patient Name] least satisfied with?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
- e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian, or nutritionist services
- Social work
- Access to medical equipment or supplies
e.g., wheelchair, homecare bed, oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- [Patient Name] was satisfied with all services they received
For which reasons was [Patient Name] dissatisfied with these services?
Select all that apply.
- Services needed were not available in [Patient Name]’s area
- Poor quality
e.g., concerns about provider competence, reliability of services
- Services did not address [Patient Name]’s needs
- I could not access enough services to meet [Patient Name]’s needs
- Long wait times to receive services
- Cost was too high
- There was a language barrier
- Other
Which of the following services was [Patient Name] unable to access at home?
Select all that apply.
- Pain management
- Medical care and consultations
- Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
- Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
- Social work
- Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
- Mental health services
- Spiritual counselling
- Respite services for caregiver
- Grief counselling
OR
- [Patient Name] was able to access all services at home
OR
- [Patient Name] did not try to access these services at home
For what reasons was [Patient Name] unable to access these services at home?
Select all that apply.
- Services needed not available in their area
- Cost was too high
- Lack of knowledge about available services or how to access them
- Healthcare provider did not recommend the service for them
- They were not eligible for funded home services
- Scheduling issues
- Spatial or access limitations of their home
- Cultural or language barriers
e.g., services available did not accommodate their cultural or linguistic needs
- Transportation issues
- Quality concerns
- Privacy concerns
- Other
OR
- [Patient Name] did not want to access services at their home
OR
- [Patient Name] did not need these services at home
Preferred setting of end-of-life care
“End-of-life care” refers to care provided during the final stages of a serious illness.
“Setting of Care” in this context refers to the preferred location for end-of-life care, chosen by the patient, their family and healthcare professionals. This choice, influenced by various circumstances, aims to respect the patient’s wishes while providing necessary care. Examples of possible settings include home, hospice, hospital or long-term care facilities.
Did [Patient Name] have discussions with their healthcare providers about their preferred setting for end-of-life care?
Where was [Patient Name]’s preferred setting for end-of-life care?
- Private home or apartment
- Hospice
a special facility for people living with a serious illness who are nearing the end of life
- Hospital
- Seniors’ residence
- Long-term care facility
- Assisted living facility
- [Patient Name] didn’t have one
- I don’t know
- Other
- Please specify preferred setting
What was most important to [Patient Name] when choosing their setting for end-of-life care?
Select top three.
- Severity of medical condition
- Pain and other symptom management
e.g., whether symptoms are under control
- Availability of professional assistance
- Availability of informal assistance
e.g., family, friends, or community members
- Access to urgent care or specialists
- Finances
- Personal wishes
- Family considerations
- Social connections
- Spiritual or cultural considerations
- Other
OR
- Don’t know
Overall, how much did access to care impact [Patient Name]’s choice of settings for their end of life?
- To a large degree
- To some degree
- To a small degree
- Not at all
- Don’t know
Did [Patient Name] die in their preferred setting for end-of-life care?
Caregiver support
This section is designed to understand your experience as a caregiver, focusing on the support you received and your overall experience.
How long were you a caregiver for [Patient Name]?
- Less than 6 months
- 6 months to less than a year
- 1 to 2 years
- More than 2 years
How many hours per week did you usually dedicate to providing care for [Patient Name]?
Types of care and support may include providing personal care, help with household activities, transportation, meal preparation, etc.
- Less than one hour per week
- 1 to less than 5 hours per week
- 5 to less than 15 hours per week
- 15 to less than 35 hours per week
- 35 hours or more per week
Did you live with [Patient Name] while providing care for them?
What kinds of care did you provide for [Patient Name]?
Select all that apply.
- Personal care
e.g., dressing, bathing, toileting
- Medical care
e.g., help taking medicine, wound care
- Managing care
e.g., making appointments, communicating with healthcare providers
- Help with household activities
e.g., housework, home maintenance, outdoor work
- Transportation
e.g., to appointments, for errands
- Meal preparation, help with eating or having food delivered
- Banking, paying bills or preparing taxes
- Psychological, spiritual and emotional support
e.g., social visits, outings
- Financial support to help pay for services
- Other
- Please specify the kind of care you provided
Did you have an assessment to determine your own needs for support as a caregiver for [Patient Name]?
Support for caregivers might include training, support groups, home care and temporary respite care for the person you take care of.
Overall, did you receive the help and support you needed to care for [Patient Name]?
- Yes, totally
- Yes, partially
- No
In your role as a caregiver, where do you feel more support would have been the most beneficial?
Select the top three.
- Enhanced communication with healthcare providers
e.g., better clarity and more information
- Professional homecare services
- Caregiver training
e.g., training on organizing care, giving medications, changing dressings
- Respite care
e.g., to enable a break from caregiving duties
- Financial support
e.g., assistance with expenses
- Work flexibility
- Emotional and psychological counselling
- Relief from other responsibilities
e.g., childcare, meal preparation, and housework for your own household
- Dedicated personal time
- Peer support
e.g., connecting with other caregivers for shared experiences and advice
- Other
- Please specify the area needing more support
OR
- I had all the support I needed
Please indicate your level of agreement with the following statements.
- [Patient Name]’s healthcare providers were always willing to answer my questions
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- When I felt I needed help with caregiving responsibilities I knew where to get support
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- I knew where to go when I needed information regarding my caregiving responsibilities
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Overall, I had a positive experience being a caregiver for [Patient Name]
- Strongly agree
- Agree
- Disagree
- Strongly disagree
Sources of information
The following questions aim to understand where the person with a serious illness found information about their serious illness, resources and support.
Did any of [Patient Name]’s healthcare providers provide them with helpful sources of information (e.g., as brochures, websites, support groups) for their serious illness and care options?
From your perspective, did [Patient Name] have sufficient opportunities to discuss and ask questions about their illness and care with their healthcare providers?
Have you and [Patient Name]’s family members also been provided with necessary information about [Patient Name]’s serious illness and care options?
Besides healthcare providers, where else did [Patient Name] seek information for the care and support they needed for their serious illness?
Select all that apply.
- Local, provincial, or national organizations
- International organizations or resources
- Internet search
e.g., Google
- Health-specific websites or online forums
- Social media, blogs or vlogs
- Family, friends or community members
- Traditional media
e.g., books, magazines, TV, radio
- Educational institutions
- Spiritual groups
- Other
- Please specify the source of information
OR
- [Patient Name] did not seek additional information
OR
- Don't know
Cultural considerations
The following questions aim to understand [Patient Name]’s unique experiences, preferences, and challenges in respect to their culture or spirituality while receiving care for their serious illness.
Overall, how comfortable was [Patient Name] discussing their cultural needs with their care providers?
- Very comfortable
- Somewhat comfortable
- Not comfortable
- Not comfortable at all
- Not applicable
Overall, how would you describe the care providers' sensitivity to [Patient Name]’s cultural needs?
Cultural sensitivity is awareness and respect for another’s cultural beliefs, values and practices.
- Very culturally sensitive
- Somewhat culturally sensitive
- Not culturally sensitive
- Not culturally sensitive at all
- Not applicable
What types of cultural or spiritual misunderstandings or barriers did [Patient Name] encounter?
Select all that apply.
- Difficulties related to language or communication
- Differences in care approach due to cultural expectations or beliefs
- Dietary or food-related
- Misinterpretation of cultural or spiritual rituals or practices
- Lack of accommodation or privacy to carry out cultural practices
- Inappropriate remarks or behaviour
- Other
- Please specify type of misunderstanding or barrier
OR
- [Patient Name] did not encounter any types of cultural or spiritual misunderstandings
Palliative care
Palliative care is a relatively new field of medicine that takes a holistic approach to caring for those living with a serious illness.
It encompasses much of the care already asked about in this questionnaire, from pain and symptom management to emotional and spiritual needs and aims to consider the individual needs of each person living with a serious illness and their families and loved ones.
It can begin as soon as an illness is diagnosed, and it can be provided at the same time as someone is receiving treatments aimed at curing their illness.
Next are a few questions regarding palliative care.
Which of the following professionals spoke with [Patient Name] about palliative care?
Note: Press the help button (?) for additional information.
Select all that apply.
- Family doctor or nurse practitioner
- Palliative care specialist
- Other medical specialist
- Social worker
- Psychologist
- Patient advocate
- Other
- Please specify the professional
OR
- No one has spoken to [Patient Name] about palliative care
Considering the definition provided, to what degree would you say [Patient Name] has received a palliative approach to their care?
A palliative approach is a specialized form of medical care for people with serious illnesses. It focuses on providing relief from symptoms and concerns, with the goal of improving quality of life for both the person with a serious illness and their family and caregivers. It is a holistic approach that addresses physical, emotional, social and spiritual needs and can be provided alongside treatment for the serious illness.
- To a large degree
- To some degree
- To a small degree
- Not at all
Please indicate your level of agreement with the following statements.
- [Patient Name] received palliative care early in the progression of their disease
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
- The people [Patient Name] was close to received support to help them cope with [Patient Name]’s illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
- [Patient Name]’s care was coordinated across medical, social and psychological needs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
- The care [Patient Name] received for their serious illness has improved their mental health
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
- [Patient Name] was supported by a team who were focused on their well-being
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
Palliative care aims to improve the quality of life for those living with a serious illness, their unpaid caregivers and family members by providing holistic care focused on individual needs and wishes.
Quality of life encompasses many aspects of life that contribute to well-being, including physical and mental health, personal beliefs, social relationships and other factors such as where we live.
With this in mind, please answer the following question:
To what extent did the care received by [Patient Name] for their serious illness affect their overall quality of life?
- Improved significantly
- Improved somewhat
- No change
- Declined somewhat
- Declined significantly
Education of person living with a serious illness
What was the highest certificate, diploma or degree that [Patient Name] completed?
- Less than high school diploma or its equivalent
- High school diploma or a high school equivalency certificate
- Trades certificate or diploma
- College, CEGEP or other non-university certificate or diploma (other than trades certificates or diplomas)
- University certificate or diploma below the bachelor’s level
- Bachelor’s degree
e.g., B.A., B.A. (Hons), B.Sc., B.Ed., LL.B.
- University certificate, diploma or degree above the bachelor’s level
Sexual orientation of the person living with a serious illness
This question collects information on sexual orientation to inform health programs that promote equitable access and treatment for individuals living with a serious illness in Canada.
Please answer to the best of your knowledge.
What was [Patient Name]’s sexual orientation?
Sexual orientation refers to how a person describes their sexuality.
- Heterosexual (i.e., straight)
- Lesbian or gay
- Bisexual or pansexual
- Or please specify
- Specify this person's sexual orientation:
Marital status of the person living with a serious illness
What was [Patient Name]’s marital status?
Was it:
- Married
For Quebec residents only, select the "Married" category if your marital status is "civil union".
- Living common law
Two people who live together as a couple but who are not legally married to each other.
- Never married (Not living common law)
- Separated (Not living common law)
- Divorced (Not living common law)
- Widowed (Not living common law)
Indigenous identity of the person living with a serious illness
Was [Patient Name] First Nations, Métis or Inuk (Inuit)?
First Nations (North American Indian) includes Status and Non-Status Indians.
If "Yes", select the responses that best describes this person.
- No, not First Nations, Métis or Inuk (Inuit)
OR
- Yes, First Nations (North American Indian)
- Yes, Métis
- Yes, Inuk (Inuit)
Sociodemographic characteristics of the person living with a serious illness
The following question collects information in accordance with the Employment Equity Act and its Regulations and Guidelines to support programs that promote equal opportunity for everyone to share in the social, cultural and economic life of Canada.
Select all that apply.
Was [Patient Name]:
- White
- South Asian
e.g., East Indian, Pakistani, Sri Lankan
- Chinese
- Black
- Filipino
- Arab
- Latin American
- Southeast Asian
e.g., Vietnamese, Cambodian, Laotian, Thai
- West Asian
e.g., Iranian, Afghan
- Korean
- Japanese
- Other
Place of birth, immigration and citizenship of person living with serious illness
Where was [Patient Name] born?
- Born in Canada
- Born outside Canada
Was [Patient Name] a Canadian citizen?
- Yes, a Canadian citizen by birth
- Yes, a Canadian citizen by naturalization (Canadian citizen by naturalization refers to an immigrant who was granted citizenship of Canada under the Citizenship Act.)
- No, not a Canadian citizen
Was [Patient Name] a landed immigrant or permanent resident?
A landed immigrant or permanent resident is a person who has been granted the right to live in Canada permanently by immigration authorities.
In what year did [Patient Name] first become a landed immigrant or a permanent resident?
If exact year is not known, enter best estimate.
Language of the person living with a serious illness
Could [Patient Name] speak English or French well enough to conduct a conversation?
- English only
- French only
- Both English and French
- Neither English nor French
Total income of the person living with a serious illness
Now a question about total household income.
What is your best estimate of [Patient Name]’s total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?
Income can come from various sources such as from work, investments, pensions, or government. Examples include Employment Insurance, social assistance, child benefits and other income such as child support, spousal support (alimony) and rental income.
Capital gains should not be included in the household income.
- Rounded to the nearest CAN$
What is your best estimate of [Patient Name]’s total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?
- Less than $20,000
- $20,000 to less than $40,000
- $40,000 to less than $60,000
- $60,000 to less than $80,000
- $80,000 to less than $100,000
- $100,000 to less than $150,000
- $150,000 and over
Open-ended question
Do you have any further concerns about the care [Patient Name] received for their serious illness, that have not been covered by this questionnaire? If yes, please let us know what they are below.
Proxy question
Did someone help you complete this questionnaire?
- Yes, someone helped me complete the questionnaire
- No, I completed the questionnaire myself
Province
In which province or territory [do/did] [you/[Patient Name]] live?
- Province or territory
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Northwest Territories
- Nova Scotia
- Nunavut
- Ontario
- Prince Edward Island
- Quebec
- Saskatchewan
- Yukon
OR
- Outside of Canada
Administrative information
To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health. The ministries of health may make the data available to local health authorities.
Provincial and territorial ministries of health and local health authorities would receive the survey responses and the postal code.
To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health and the Institut de la statistique du Québec. The Institut de la statistique du Québec and the ministries of health may make this data available to local health authorities.
Provincial and territorial ministries of health, the Institut de la statistique du Québec and local health authorities would receive the survey responses and the postal code.
These organizations have agreed to keep the data confidential and use it only for statistical purposes.
Do you agree to share the data you provided?
[If you are answering on behalf of someone else, please consult that person./If you are able to, please consult [Patient Name] before providing a response.]
