ADDING HEAT FORM (complete)

Tell us what you think!

There's a consent form below that has all the information you need to decide whether you want to take part. There's a question you'll have to answer correctly, box that needs to be checked, and then the questions will open up for you to answer. You will not be asked to share any personal health information.

Consent Form

You are invited to take part in a research study being led by, Jennifer Lane, a faculty member in Nursing at Dalhousie University. The purpose of this research is to identify and explore gaps in service delivery and advance health equity in the part of Mi’kma’ki that is referred to as Nova Scotia (NS).

We will use multiple methods (described below) to achieve the study’s purpose. Our research team is comprised of individuals working with and/or belonging to underserved populations in NS who will use health equity indicators (e.g., age, citizenship, disability, ethnicity, gender, race, sex, sexual orientation, and socioeconomic class) to address the following objectives:

Create an inventory of NS-relevant health equity-related knowledge
Conduct a survey and interviews to examine the co-ordination of care in NS using a context-specific health equity lens, and
Share what we find out about health equity-related gaps in service delivery in NS to inform an integrated model of care that advances health equity across the province.

If you live in Nova Scotia, are 16 years of age or older, and have accessed and/or delivered healthcare services in NS, then you are eligible to participate in this study. The study is funded by Dalhousie University and Research Nova Scotia.

There are no direct benefits to you if you participate in this research. The research, however, might contribute to new knowledge on gaps in healthcare services that could inform the advancement of health equity in Nova Scotia.

Your participation in this research is entirely your choice.

If you want to participate in this research and agree with what’s said in this section, then you need to check the “I agree” box below. Once you do this, part one questions will become available for you to answer. They consist of questions that relate to age, appearance, beliefs, belonging, citizenship, disability, ethnicity, gender, race, sex, sexual orientation, and socioeconomic class. For each question, there is an option that will allow you to answer, “prefer not to say” if you would rather not specify which underrepresented group you belong to.

Questions that relate to belonging, citizenship, ethnicity, gender, race, religion, and sexual orientation have several options for you to choose from, including a “would rather specify or provide additional information”, which ensures that you can choose how your data will be represented in the study. These questions should take less than 10 minutes to complete, but the time it takes will depend on how many questions apply to you, which will vary from person to person.

Your answers to part one questions will be used to analyze your survey answers, should you choose to participate in that part of the study (see below). Part one questions will also be used to help us involve a diverse group of people to do interviews, should you express an interest in participating in this part of the study (see below).

The risks associated with this study are no greater than those you encounter in your everyday life. While this study is defined as minimal risk research, it is important to consider the possible harms that might result from participating. If you choose to do an interview, then we will discuss those risks in more detail at a later date. If you decide to respond to the survey questions, you might consider the conditions under which health services are delivered and how they impact your quality of life. You might also be reminded of negative experiences from your past, which could trigger trauma or discomfort and place some individuals’ mental health at a moderate risk. Another risk associated with this study is a breach of confidentiality because we are using online platforms to collect data. We are taking steps to mitigate this risk.

Once you complete part one questions, part two questions will ask you what parts of the study you want to be involved in. You can choose to participate in the survey and/or express an interest in participating in a group interview. Please see the information in second three of this document for information on participating in the interview portion of this study.

If you choose to do the survey, then you will be asked to provide your contact information at the end of the survey, after you’ve answered the survey questions. If you choose to do both the interview and the survey, then you will be asked to provide your contact information twice, after you express an interest in participating in an interview as well as at the end of the survey.

Survey questions are in two sections that should take a total of about 20 minutes to complete:

the first section includes 26 questions that will ask you how you feel about how satisfied you are with different aspects of your health, and
the second section of the survey questions will ask you questions about care delivery—the number of questions you receive will depend on your primary role in the health system—if your primary role is a patient, then you will be given 17 questions that will ask you about how satisfied you are with the health care you receive. If your primary role is a provider, then you will be given 21 questions that will ask about how satisfied you are with the care you deliver. There is no reason for the different number of questions aside from the instruments that we’re using don’t have the same number of questions. Once you’re finished, you will be asked to provide your name, email address, and/or phone number so we can enter your name into a draw to win one of two iPads. If you win, then we will use this information to contact you. All contact information collected for the iPad draw will be deleted once the draw happens.

If you choose to complete the survey, we would like to thank you for your time by entering you into a draw for a chance to win one of two iPads. Your contact information for the draw will stored separately from your survey responses as described above.

If you express an interest in the interview, but not the survey, then you will be asked to provide your name, email address, and/or phone number. We will only use this information to contact you to schedule your interview. There is a separate consent process for the interviews, which can be found here for group interviews.

The general findings of this research will be shared on the study website (HEResearch.ca) and described in at least two publications. We will only directly inform people who express an interest in being contacted about the study results. If you want to be directly informed about the study results, then let us know by emailing herlab@dal.ca.

You should discuss any questions you have about this study. Please ask as many questions as you like before or after participating. You can email HERLab@dal.ca to contact us or call Jennifer Lane directly at (902) 489-7410.

If you have any ethical concerns about your participation in this research, you may contact Research Ethics, Dalhousie University at (902) 494-3423, or email ethics@dal.ca (and reference REB file # 2023-6903).

If you agree to completing the survey, then answer the question below correctly, and the remaining terms of participation will appear.

By checking the “I agree” box, you will be asked to do which of the following? Select all that apply*

Answer questions that relate to different parts of your identityChoose which parts of the study you want to participate in

Check the box below to agree to the terms and conditions of participation. Then you will be able to answer more questions.

What is your date of birth?*

DayMonthYear

Do you live in Nova Scotia?*

YesNo

Which county in Nova Scotia do you live in?*

What are the first three digits of your postal code?*

What neighbourhood do you currently live in? (leave blank if you'd rather not say)

Have you always lived in the neighbourhood you currently live in?*

YesNoPrefer not to answer

Where else have you lived? (leave blank if you'd rather not say)

Were you born in Canada?*

YesNo

How did your ancestors/family come to Canada? Select all that apply*

Ancestors/family are Indigenous and have always been here, even before it was called CanadaAncestors/family are Foundational Black Nova Scotians and came here more than 400 years agoAncestors/family immigrated here more than three generations agoGreat grandparents immigrated to CanadaGrandparents immigrated to CanadaParents immigrated to CanadaPrefer not to answerWould rather specify or provide additional information

Which of the following terms best describe(s) how/why you came to Canada?*

What language are you most comfortable using?*

EnglishFrenchA non-official language

What language are you most comfortable using?

Which of the following impact(s) your ability to communicate or connect with people? This can be any way that you interact with people, including in-person, over-the-telephone, or online interactions.*

Language barriersCultural barriersTechnological barriers (e.g., poor internet access, no phone/computer)An unknown or undiagnosed disorder (e.g., behavioural, cognitive, communication, language, mental, psychological, sensory processing, or speech disorder)A lack of social support or shared experience with people in social circle is limitedNone of the abovePrefer not to answerWould rather specify or provide additional information

Are all your needs always met by the health system?*

YesNo

Which of the following cause(s) your needs to go unmet? Select all the apply.*

If you wish, use this space to share more about forms of oppression or discrimination that cause your needs to go unmet in the health system:

Do you have a disability? This can include any condition that causes you to experience difficulties that people without the condition don't experience.*

YesNo

Which of the following cause you to experience difficulties? Select all that apply*

Seeing, even when wearing glasses or contact lensesHearing, even with hearing aids or without cochlear implantsDoing physical activities, such as walking, lifting, or using handsA form of neurodivergence (e.g., ADHD, autism, dyslexia, intellectual disability, Tourette’s)Chronic medical health condition (e.g., diabetes, arthritis, Crohn's, pain, migraines)Emotional, psychological, or mental health condition (e.g., anxiety, depression, PTSD, schizophrenia, or substance use)A history of abuse (e.g., bullying, emotional, intimidation, physical, self-directed, sexual)Prefer not to answerWould rather specify or provide additional information

Consider the impact of your condition(s) on your everyday life. Please rate the degree to which you can do what you need to do in your everyday life.

	None	Minimal	Moderate	Often	Severe
Impact of condition(s)

Which of the following significantly impact(s) you? Select all that apply.*

Religion - your own (option to specify)Spirituality - your own (option to specify)Political views - your own (option to specify)Beliefs/views - of others (option to specify)None of the abovePrefer not to answerWould rather specify or provide additional information

Which of the following terms best describes your religious participation?*

Active religious participationPast religious participationPrefer not to answerWould rather specify or provide additional information

Which of the following religions?*

If you wish, use this space to share more about how you’re impacted by your or others’ beliefs/views

Which term(s) would you use to describe your race and ethnicity? Please select all that apply. If you make selection(s), then you will be able to be more specific about your race and ethnicity.*

Indigenous (select for more options)Black (select for more options)Acadian (option to specify)East Asian, South Asian, or Southeast Asian (select for more options)Hispanic or Latino/Latina/Latinx (option to specify)Middle Eastern, West Asian, or North African (select for more options)White (option to specify)Prefer not to answerWould rather specify or provide additional information

Which term(s) would you use to describe your Indigenous identity? Please select all that apply.

Which term(s) would you use to describe your Black identity? Please select all that apply.

African Nova Scotian (i.e., Foundational Black Nova Scotians whose ancestors came here over 400 years ago)African DescentCaribbean DescentPrefer not to answerWould rather specify or provide additional information

Which term(s) would you use to describe your Asian identity? Please select all that apply.

Which term(s) would you use to describe your Middle Eastern, West Asian, or North African identity? Please select all that apply.

If you wish, use this space to share more about your racial or ethnic identity:

What was your sex at birth?*

FemaleMaleIntersex

Do you agree with the sex you were assigned at birth?*

YesNo

Which of the following terms best describes your gender?*

ManWomanPrefer not to answerSee more options

Which of the following term(s) would you use to describe your gender? Please select all that apply*

Specify your trans identity (only if you wish):

Choose the answer that best describes you:*

Straight/heterosexualSexual minority (see more options)

Which term(s) best describe(s) your sexual orientation? Please select all that apply.*

Is there anything else that causes you to be treated differently by others?*

YesNo

Which of the following causes others to treat you differently? Select all that apply.*

Cultural or faith markersGender expressionPhysical features/characteristicsPhysical impairment, abnormality, or need for assistive devicesPrefer not to answerWould rather specify or provide additional information

Which of the following cultural/faith markers apply to you?

Please rate your gender presentation

	Very feminine	Feminine	Neutral	Masculine	Very masculine
Gender Presentation

Specify what it is about your gender expression that impacts how you're treated by others (only if you wish).

Which of the following physical features/characteristics impact how you're treated by others? Select all that apply.

Facial feature(s)/characteristic(s) - eyes, lips, nose, scarFeature(s)/characteristic(s) of hair - colour, textureFeature(s)/characteristic(s) of skin - colour, scarring, shadeSize - height, weight, option to specifyPrefer not to answerWould rather specify or provide additional information

Which of the following applies to you? Select all that apply.

Physical impairment - limp, paralysisPhysical abnormality - amputated limb, congenital deformityNeed for assistive devices - crutches, wheelchairPrefer not to answerWould rather specify or provide additional information

This section will ask you about your education, income, employment, living arrangements, and transportation.

Are you currently a student?*

YesNo

What level of education are you currently completing?*

Less than high schoolHigh school or equivalentRegistered apprenticeship or other trades certificateCollege or another non-university certificate or diplomaUniversityPrefer not to answerWould rather specify or provide additional information

What is the highest level of education you have completed?*

Less than high schoolHigh school or equivalentRegistered apprenticeship or other trades certificateCollege or another non-university certificate or diplomaUniversityPrefer not to answerWould rather specify or provide additional information

Which of the following best describes your highest level of university education (completed or currently completing)?

Have you ever served in the Canadian Armed Forces?*

YesNo

Which of the following best describes your service in the Canadian Armed Forces?

Current serving memberFormer serving memberPrefer not to answerWould rather specify or provide additional information

Which of the following best describe(s) your employment status? Select all that apply.

Do you have a safe place to live?

YesNoPrefer not to answer

Is there enough space at home for you to feel comfortable?

YesNoPrefer not to answer

Which of the following best describes your housing situation?

No place to liveTemporary housing (current housing situation is for a short period of time)Long-term housing with no formal rental agreement (can include living with parents, siblings, chosen family, etc.)Formal rental agreement (apartment, condo, house, etc.)Homeowner and pay a mortgageHomeowner with no mortgagePrefer not to answerWould rather specify or provide additional information

How many people live with you?

Do you (or anyone living with you) financially depend on someone else? This includes anyone who relies on someone else for financial support (e.g., people who are 18 years of age or younger).

NoYesPrefer not to answer

How many people are financially dependent in your home?

Are you (or any adults in your home) married, living common-law, or in another type of legally recognized partnership?

NoYes, there is one legally recognized partnership at homeYes, there are two or more legally recognized partnerships at homePrefer not to answer

Which of the following statements best describes your current financial situation?

No financial responsibilities at homeSometimes bills do not get paidBills get paid, but there is no money left overSome spending money is left over after bills are paidEnough money is left over after bills are paid to save or investPrefer not to answerWould rather specify or provide additional information

Which of the following statements best describes how you get to the places you need to go (work, meetings, appointments, get groceries, medications, etc.)?

Please indicate if you want to participate in the survey and/or an interview:*

SurveyGroup interview

If you have a code to enter with your survey response, do so here:

*REQUIRED FOR EVENTS

Which type of interview would you prefer to participate in?*

An individual interviewA group interview

Would you like the support of an interpreter?

NoYes (specify what language the interpreter should speak)

Are you an Indigenous Person who would like to develop an agreement on how your interview data will be used in this study?

YesNo

Please provide your contact information so we can schedule your interview.

Name

First NameLast Name

Email

example@example.com

Phone Number

Please enter a valid phone number.

How would you rate your quality of life?*

	Very Poor	Poor	Neither poor nor good	Good	Very good
How would you rate your quality of life?

How satisfied are you with your health?*

	Very dissatisfied	Dissatisfied	Neither satisfied nor dissatisfied	Satisfied	Very satisfied

The following questions ask about how much you have experienced certain things in the last two weeks.*

	Not at all	A little	A moderate amount	Very much	An extreme amount
To what extent do you feel that (physical) pain prevents you from doing what you need to do?
How much do you need any medical treatment to function in your daily life?
How much do you enjoy life?
To what extent do you feel your life to be meaningful?

The following questions ask about how much you have experienced certain things in the last two weeks.*

	Not at all	A little	A moderate amount	Very much	An extreme amount
How well are you able to concentrate?
How safe do you feel in your daily life?
How healthy is your physical environment?

The following questions ask about how completely you experience or were able to do certain things in the last two weeks. *

	Not at all	A little	A moderate amount	Very much	An extreme amount
Do you have enough energy for everyday life?
Are you able to accept your bodily appearance?
Have you enough money to meet your needs?

The following questions ask about how completely you experience or were able to do certain things in the last two weeks. *

	Not at all	A little	A moderate amount	Very much	An extreme amount
How available to you is the information that you need in your day-to-day life?
To what extent do you have the opportunity for leisure activities?

How well are you able to get around?*

	Very Poor	Poor	Neither poor nor good	Good	Very good
How well are you able to get around?

The following questions ask you to say how good or satisfied you have felt about various aspects of your life over the last two weeks.*

	Very dissatisfied	Dissatisfied	Neither satisfied nor dissatisfied	Satisfied	Very satisfied
How satisfied are you with your sleep?
How satisfied are you with your ability to perform your daily living activities?
How satisfied are you with your capacity for work?

The following questions ask you to say how good or satisfied you have felt about various aspects of your life over the last two weeks.*

	Very dissatisfied	Dissatisfied	Neither satisfied nor dissatisfied	Satisfied	Very satisfied
How satisfied are you with yourself?
How satisfied are you with your personal relationships?
How satisfied are you with your sex life?
How satisfied are you with the support you get from your friends?

The following questions ask you to say how good or satisfied you have felt about various aspects of your life over the last two weeks. *

	Very dissatisfied	Dissatisfied	Neither satisfied nor dissatisfied	Satisfied	Very satisfied
How satisfied are you with the conditions of your living place?
How satisfied are you with your access to health services?
How satisfied are you with your transport?

The following question refers to how often you have felt or experienced certain things in the last two weeks. *

	Never	Seldom	Quite often	Very often	Always
How often do you have negative feelings such as blue mood, despair, anxiety, depression?

Please select which of the following options best describes your primary role in the health system:

Patient/service userProvider/staff (physician; surgeon; nurse practitioner; registered nurse; licensed practical nurse; social worker; pharmacist; physiotherapist; respiratory therapist; occupational therapist; administrator, manager, director, department head, clerk; etc.)

Which is the primary setting in which you are involved in providing health care?

Hospital (in-patient and out-patient services)Community (outside of the hospital)

How many of your needs get assessed when you access health care?*

	All	Most	Some	A few	None	Not sure/ Not applicable
How many of your needs are typically assessed?

Are you as involved as you want to be in decisions about your care and support?*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Are you as involved as you wanted to be in decisions about your care and support?

Is your family or carer as involved in decisions about your care and support as you want them to be?*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Is your family or carer as involved in decisions about your care and support as you wanted them to be?

Overall, do you feel that your carer/family receive support from health and social services as needed?*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Overall, do you feel that your carer/family receive support from health and social services as needed?

When answering these questions, please consider the first point of contact that you make when accessing health care.*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Do health and social care staff tell you what will happen next?
When health or social care staff plan care or treatment for you, does it happen?
Is your care and support reviewed as they should be?
Is your medication thoroughly reviewed as it should be?

When answering these questions, please consider the first point of contact that you make when accessing health care.*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Do you know who to contact if you need to ask questions about your condition or treatment?
If you have questions, can you contact the people treating and caring for you?
Do all the different people treating and caring for you work well together to give you the best possible care and support?

Do health and social care services help you live the life you want?*

	Completely	A lot	Moderately	A little	Hardly	Not sure/ Not applicable
Do health and social care services help you live the life you want?

When answering these questions, please consider the first point of contact that you make when accessing health care.*

	Always	Often	Sometimes	Rarely	Never	Not sure/ Not applicable
Do health and social care staff give you information about other services that are available to someone in your circumstances, including support organizations?
Is information given to you at the right time?
Is information provided in a way that you can understand?
Can you meet/phone/email a professional when you need to ask more questions or discuss options?
If you still needed contact with previous services/professionals, would it be possible?

How much do you agree or disagree with the following statements about care coordination?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Patient care is well-coordinated among providers, nurses, and staff
Providers and staff meet frequently (e.g., team huddles) to plan for patient care
Candid and open communication exists between providers and other staff

How much do you agree or disagree with the following statements about coordination with external providers?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Patient care is well-coordinated with external health care providers (e.g., specialists, hospitals, primary care providers)
We have good systems in place to track referrals to external providers
We routinely receive/ provide discharge summaries after our patients are hospitalized/ discharged

How much do you agree or disagree with the following statements about coordination with community resources?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Patient care is well- coordinated with community resources (e.g., support groups, food pantry, shelters)
Providers and staff are well-informed about available community resources for patients
We have established relationships with community agencies to facilitate our referrals to them

How much do you agree or disagree with the following statements about familiarity with the patient?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Providers and staff are well-informed about patients’ medical history and current treatments in a timely manner
Providers and staff are well-informed about patients’ current social needs (e.g., housing, transportation)
Patients see the same care team or provider for routine clinic visits/ during admissions.

How much do you agree or disagree with the following statements about contact between office visits?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
We routinely contact patients with chronic conditions to help them manage their conditions
We routinely contact patients to remind them of regular preventative or follow-up visits/care (e.g., flu vaccine or routine lab tests)
We routinely contact patients to inform them of abnormal laboratory results

How much do you agree or disagree with the following statements about patient-centred care?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Care is designed to meet the preferences of patients and their families
We regularly use feedback from patients and families to improve services
We communicate with patients in a way that they understand (e.g., appropriate language and literacy)

How much do you agree or disagree with the following statements about patients and providers?*

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree	Not sure/ Not applicable
Providers and staff view patients as equal partners in their care
When developing a treatment plan, providers and staff routinely encourage patients to actively participate in setting goals
Providers and staff routinely work with patients to develop self-management skills for managing their health conditions

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Part One

Part Two

Part Three:

Part Four:

The Patient Experience of Care

Provider and Staff Perceptions of Care