Long-term care home family members, friends and caregivers

Thank you for answering this survey. The survey should take about 10 minutes to complete.

Patient Ombudsman is interested in hearing about the experiences of long-term care home residents and their family members/caregivers during the COVID-19 pandemic even if there was no COVID-19 outbreak in your relative/friend’s home. We want to know about your experience since the beginning of the pandemic, March 2020 until now.

If you had more than one relative or friend living in a long-term care home at any time between March 2020 and now, please select one person and answer the survey questions based on that person.

For at least some of the pandemic, visitation restrictions were in place and you may not have direct knowledge of all of the circumstances and conditions in the long-term care home. Please answer the questions based on the best of your knowledge or recollection.

If feasible, please also consider helping your relative or friend in long-term care to complete a resident survey about their own experience during COVID-19.

All personal and other information collected for this survey will be handled confidentially and only for the purpose of Patient Ombudsman’s investigation

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* 1. What is your relationship to the person who was a long-term care home resident?

I am a family member

I am a friend

I am a paid caregiver or volunteer

Other (please specify)

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* 2. What is the name of the Long-term care home where your relative/friend lived between March and June 2020 (Optional):

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* 3. In what city/town is the home located (Optional):

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* 4. If you know, please check the type of long-term care home:

Municipal (owned by the city)

Not-for-profit

For-profit and part of a chain of home (for example, Chartwell, Extendicare, Revera or Sienna)

Independent for-profit (not part of a chain)

I don't know

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* 5. Were there one or more COVID-19 outbreaks in the home where your relative/friend lived between March 2020 and now?

Yes

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* 6. If there were one or more COVID-19 outbreaks, when did they begin? (Please check as many as apply)

March 2020

April 2020

May 2020

June 2020

July 2020

August 2020

September 2020

October 2020

November 2020

December 2020

January 2021

February 2021

March 2021

April 2021

I don't know

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* 7. If there was a COVID-19 outbreak at the home where your relative/friend lived, who became ill?

One or more residents

One or more staff members

Both residents and staff

There hasn’t been a COVD-19 outbreak in my relative/friend’s home

I don’t know

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* 8. Were there resident deaths because of COVID-19?

Yes

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* 9. Did your relative/friend become ill with COVID-19?

Yes

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* 10. What type of room did your relative/friend live in the spring of 2020?

One bed room

Two bed room (shared with one roommate)

Three or more bed room (shared with more than one roommate)

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* 11. If there was an outbreak in the home, was your relative/friend moved to a different room to help prevent the spread of COVID-19?

Yes

I don't know

There was no outbreak

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* 12. To the best of your knowledge, did your relative/friend experience a reduction in the level of support or quality of care provided in the long-term care home during the COVID-19 pandemic? Please check all that apply.

	Much better	Better	No change	Worse	Much worse
Help with meals and snacks	Help with meals and snacks Much better	Help with meals and snacks Better	Help with meals and snacks No change	Help with meals and snacks Worse	Help with meals and snacks Much worse
Help walking or moving around	Help walking or moving around Much better	Help walking or moving around Better	Help walking or moving around No change	Help walking or moving around Worse	Help walking or moving around Much worse
Help to get out of bed	Help to get out of bed Much better	Help to get out of bed Better	Help to get out of bed No change	Help to get out of bed Worse	Help to get out of bed Much worse
Help putting on and taking off clothes	Help putting on and taking off clothes Much better	Help putting on and taking off clothes Better	Help putting on and taking off clothes No change	Help putting on and taking off clothes Worse	Help putting on and taking off clothes Much worse
Washing/bathing	Washing/bathing Much better	Washing/bathing Better	Washing/bathing No change	Washing/bathing Worse	Washing/bathing Much worse
Daily oral care (mouth care, brushing teeth, denture care)	Daily oral care (mouth care, brushing teeth, denture care) Much better	Daily oral care (mouth care, brushing teeth, denture care) Better	Daily oral care (mouth care, brushing teeth, denture care) No change	Daily oral care (mouth care, brushing teeth, denture care) Worse	Daily oral care (mouth care, brushing teeth, denture care) Much worse
Foot and nail care	Foot and nail care Much better	Foot and nail care Better	Foot and nail care No change	Foot and nail care Worse	Foot and nail care Much worse
Nursing care	Nursing care Much better	Nursing care Better	Nursing care No change	Nursing care Worse	Nursing care Much worse
Medical care	Medical care Much better	Medical care Better	Medical care No change	Medical care Worse	Medical care Much worse
Emotional support	Emotional support Much better	Emotional support Better	Emotional support No change	Emotional support Worse	Emotional support Much worse
Rehabilitation/therapy	Rehabilitation/therapy Much better	Rehabilitation/therapy Better	Rehabilitation/therapy No change	Rehabilitation/therapy Worse	Rehabilitation/therapy Much worse
Dental/denturist care	Dental/denturist care Much better	Dental/denturist care Better	Dental/denturist care No change	Dental/denturist care Worse	Dental/denturist care Much worse
Activities and recreation	Activities and recreation Much better	Activities and recreation Better	Activities and recreation No change	Activities and recreation Worse	Activities and recreation Much worse
Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid)	Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid) Much better	Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid) Better	Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid) No change	Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid) Worse	Maintenance/repairs for assistive medical devices (for example, walker, wheelchair, hearing aid) Much worse
Help with medications and drugs	Help with medications and drugs Much better	Help with medications and drugs Better	Help with medications and drugs No change	Help with medications and drugs Worse	Help with medications and drugs Much worse
Meal choice	Meal choice Much better	Meal choice Better	Meal choice No change	Meal choice Worse	Meal choice Much worse
Support for special diets	Support for special diets Much better	Support for special diets Better	Support for special diets No change	Support for special diets Worse	Support for special diets Much worse
Quality or amount of food	Quality or amount of food Much better	Quality or amount of food Better	Quality or amount of food No change	Quality or amount of food Worse	Quality or amount of food Much worse
Spiritual/religious support	Spiritual/religious support Much better	Spiritual/religious support Better	Spiritual/religious support No change	Spiritual/religious support Worse	Spiritual/religious support Much worse
Cleaning of resident’s room and common areas	Cleaning of resident’s room and common areas Much better	Cleaning of resident’s room and common areas Better	Cleaning of resident’s room and common areas No change	Cleaning of resident’s room and common areas Worse	Cleaning of resident’s room and common areas Much worse

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* 13. Did you have concerns about the level or quality of care your relative/friend received in the long-term care home before the COVID-19 pandemic?

Yes

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* 14. Was your relative/friend confined to their room to prevent the spread of COVID-19 or because staff were not available to help?

Yes

I don't know

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* 15. Was your relative/friend left in bed all day because staff were not available to help?

Yes

I don't know

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* 16. Was your relative/friend denied the ability to go outside to prevent the spread of COVID-19 or because staff were not available to help?

Yes

I don't know

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* 17. Did you notice an overall decline in the health or well-being of your relative/friend living in a long-term care home between March 2020 and now related to COVID-19?

Yes

I don't know

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* 18. If you answered ‘Yes’, what changed in your relative/friend’s health or well-being? Please check all that apply.

General decline in physical health

General decline in ability to do day to day activities

General decline in emotional well-being

Loss of skin integrity/bed sores

Increased pain/poor pain management

Weight loss

Difficulty walking

Difficulty with eating

Difficulty moving from bed to chair

Increased sadness or depression

Increased anxiety

Loneliness

Memory decline

Increased confusion

Decreased ability to communicate

Other (please specify)

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* 19. What is the mother tongue of your relative/friend living in a long-term care home?

English

French

Other (please specify)

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* 20. Does your relative/friend normally receive services in their mother tongue in the long-term care home?

Yes

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* 21. If you answered yes to question 20, did the COVID-19 pandemic affect access to services in their mother tongue between March 2020 and now?

Yes

Does not apply

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* 22. Did you raise concerns with anyone about the level of support or quality of care your family member/friend received in the long-term care home between March 2020 and now?

Yes

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* 23. Who did you share your concerns with? Please check all of the people or organizations you shared your concerns with.

Staff in the long-term care home

Public health

Ministry of Long-term Care or Ministry of Health

Patient Ombudsman

Media

Does not apply

Other (please specify)

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* 24. What types of help or support did you routinely provide to your relative/friend in the home prior to the COVID-19 pandemic? Please check all examples of support you provided.

Assistance eating meals

Assistance with dressing and/or grooming

Assistance with bathing

Assistance with walking or moving around the home

Social and emotional support

Assistance with toileting

Assistance to go outside or attend outside appointments

Other (please specify)

None of the above

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* 25. How often did you visit and provide support before the COVID-19 pandemic?

Daily or almost daily

More than once a week

Weekly

less than once a week

I wasn't able to routinely visit

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* 26. At the time when visitors were not allowed, were you able to communicate with your relative/friend living in a long-term care home?

Yes

Does not apply to my situation

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* 27. How were you able to communicate with your relative/friend? Please check all forms of communication available to you.

Visit in the home as an essential visitor or caregiver

Telephone

Video visit on a tablet or computer

Window visit

Outdoor visit

E-mail or text message

Other (please specify)

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* 28. If communication wasn’t possible, what was the problem? Please check all concerns that you experienced.

No phone, tablet or computer was available

The staff were not available or did not have time to help my relative/friend

My relative/friend was unable to communicate using a phone, tablet or computer

My relative/friends state of health did not allow communication

My relative/friend has a physical limitation that made telephone or virtual communication difficult (e.g., hearing or visual impairment)

My relative/friend’s dementia or confusion made telephone or virtual communication difficult

Does not apply

I don't know

Other (please specify)

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* 29. How often were you able to communicate with your relative/friend?

Daily

More than once a week

Once a week

Less than once a week

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* 30. Were you able to communicate often enough with your relative/friend?

Yes, it was enough

No, not enough

Does not apply

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* 31. Were you able to get updates from staff at the long-term care home about your relative/friend’s health and condition? Please select all that apply to your experience.

I was able to get regular updates

I was able to get timely updates

I was only contacted when there was a significant change in my relative/friend’s health or condition

I had difficulty contacting staff or getting my calls/messages returned

I got inconsistent or inaccurate information about relative/friend's health or condition

The staff person I was able to contact did not have direct knowledge of my relative/friend's health or condition

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* 32. Were you able to get answers to your questions about your relative/friend’s condition or the situation in the long-term care home?

Yes, always or most of the time

Yes, sometimes

I didn't have questions

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* 33. Did the long-term care home contact you with information about the COVID-19 situation in the home and communicate how the home was responding?

Yes

Does not apply

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* 34. If you answered ‘Yes’ to question 33, what information did you receive? Please check all that apply to your experience.

The COVID-19 situation in the home (outbreak status, number of cases)

Measures the home was taking to protect residents (isolation of ill residents, protection zones, use of PPE)

The care provided to you relative/friend

Instructions or information about visits or communicating with residents

I don't know

Other (please specify)

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* 35. How was the information communicated? Please check all that apply.

By phone, directly by staff

Pre-recorded phone messages/"robo calls"

By newsletter or messages on the website

By email

Virtual town hall

Other (please specify)

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* 36. Did you experience any negative effects as a family member or caregiver? Please check all that apply to your experience.

I did not experience any negative impact

I was unable to help with my relative/friend's care needs

I was unable to defend the rights of my relative friend

I was unable to monitor my relative/friends condition or quality of care

I was unable to give my consent for the care or services offered to my relative/friend

I was unable to offer social or emotional support to my relative/friend

I experienced fear or worry about my relative/friend's condition and care

I experienced a lack of sensitivity or emotional support from the home

I was unable to provide care and support to my relative/friend in their final days or hours

I incurred additional financial costs because I was unable to drive my relative/friend to healthcare or other appointments outside the long-term care home

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* 37. Did you ask to visit your relative/friend for compassionate reasons?

Yes

I did not know I could make such a request

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* 38. If you answered ‘Yes’ to question 37, for what compassionate reason? Please check all reasons based on your experience.

To provide or help provide basic care

To offer emotional support

My relative/friend was dying or at risk of dying soon

Does not apply

Other (please specify)

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* 39. Was your request approved?

Yes

Does not apply

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* 40. If you were refused access, did you receive an explanation for the decision?

Yes

Does not apply

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* 41. What reason was given for refusing your request to visit?

The home did not agree that I met the definition of an essential visitor

The home did not have sufficient staff and/or personal protective equipment to support visits

Any visits were considered unsafe because of a COVID-19 outbreak

Does not apply

I don't know

Other (please specify)

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* 42. Were you able to visit your relative/friend when visits resumed?

Yes, but outdoor visits only

Yes, I was able to enter the home and visit my relative/friend

No, the home refused to acknowledge my caregiver status

No, I chose not to go to the long-term care home

Other (please specify)

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* 43. What problems, if any, did you experience when visits resumed? Please check a many as apply.

I had no problems

My caregiver status wasn't recognized

It was difficult to get tested for COVID-19

It was difficult to get timely test result

I had difficulty arranging appointments at a time that worked for me or my relative/friend

The home didn't have enough personal protective equipment for visitors

Information about the resumption of visits was confusing

Other (please specify)

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* 44. Have you received the COVID-19 vaccine?

First dose only

Fully vaccinated

I haven't had access to the vaccine

I chose not to get the vaccine

I don't know

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* 45. If you chose to not get the vaccine, why not?

I have a health condition that made it too risky (e.g., serious allergies)

I was concerned that it wouldn’t be safe

Does not apply

Other (please specify)

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* 46. Is there anything you want to add? (For example, concerns or issues the survey didn’t cover, suggestions for an improved experience in future outbreaks, compliments on how the staff or management of the home coped with the situation)