Discussion 3.4: Caregiver Supports | A Framework for Palliative Care | Let's Talk Health

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Discussion 3.4: Caregiver Supports

6 months ago

Where did you turn to for supports and information? Are you aware of the many on-line resources available in your province or territory, as well as Canadian Virtual Hospice, Carers Canada and Mygrief.ca?

Many of these can be found in the Important Links section of the consultation.


This consultation is now closed. 

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  • palliate101 4 months ago
    As a health care provider working in palliative care I am aware of these resources. They are a great source of information for anyone involved in the care of palliative patients/family members/friends. We need to remember though that people learn and retain information in many different ways. We have written resources on our unit but people also need to be hearing this information from their health care providers. In my experience people need to receive information in many different ways and many different times especially in high stress situations like the death of a loved one.
  • JusticeinDying 4 months ago
    These resources are phenomenal and absolutely necessary BUT please let’s not forget the significance of literacy issues in our communities.As well- communication at a one on one, MORE support groups need to be funded and delivered to engage that ‘community’ lens and family meetings.
  • jkatan 4 months ago
    I sought support from Caregivers Alberta - I have also recently joined a social networking group called Huddol where I have found interesting articles, local resources and the ability to join groups pertaining to specific areas of interest. As the number of informal caregivers continue to rise I hope to see provincial government grants that will allow caregiving organizations such as Caregivers Alberta to expand their education/awareness programs and reach more people.
  • Support4u 4 months ago
    I had no idea what was available. My husband got a cancer diagnosis and was gone in 7 weeks. I've asked before so I will ask again: why isn't there information available in drugstores??? I was so stunned at the diagnosis and prognosis (he was given a one month timeframe) that combing through the internet to look for support was not what I was doing. I was running to appointments, the drugstore, getting special food, looking for parking downtown in Toronto....BTW, most senior citizens are not likely to jump on a computer for help. This is a good example of how younger people who work in a system are, frankly, out of touch with seniors. Furthermore, immigrants with language challenges are also not likely to look on the internet for help when they are consumed with navigating their way to appointments, etc
  • bjpalliative 4 months ago
    Most people in our rural communities rely on support and information from their primary nurses and doctors. However, in the near future, they will have an additional source of support and information in the above-mentioned Resource Guide. All things "Canadian Virtual Hospice" are included in it.
  • hospice 4 months ago
    The CHPCA associates/affiliates (members) are all supporting patient and caregivers in everything they do. There are over 650 programs registered in the national directory all providing supports and information. This national directory provides easy access to the programs in their communities but could be expanded and updated but a good start. Navigators often help but always available to patient/caregivers.
  • Maryisarat 4 months ago
    My local hospice association has been a wonderful support for me over the last five years. We still don't have designated hospice beds in my community's hospital, but the hospice association is a strong presence. Great counselling, remembrance candle ceremonies....wonderful.
  • monkeymom 4 months ago
    I am going back a few years but obtained support through the old Home Care Program for Metro Toronto and an amazing neurologist, Dr. Peter Ashby.
  • Sherry Moran 4 months ago
    People with aging parents share this information. However, I worry about those aging without close friends or family available to gather information and ensure the results elderly get the care they need.
  • Janus 5 months ago
    It would be exceedingly helpful to have family physicians and specialists serve as gateways to information about these resources. Have you considered asking that physicians proactively make information available, via their respective offices, particularly for cohorts over the age of 60 years?
  • Bereavement Supporter 5 months ago
    I was very fortunate in that the doctor gave open honest information about the course of my husband’s cancer and when the time came, arranged for palliative care. One thing I and many others I talk to have found is that the caregiving before the palliative care stage is exhausting and there are very few available hours of support from CCAC (the previous Ontare care providers). I had an excellent palliative care nurse and doctor who answered all my questions and concerns and helped me through the at home palliative care. However, the interrupted sleep at night and the stress of the 24 hour care was very hard and there was very little relief. Palliative care for all needs to incorporate caregiver support as part of the program, not just medical support. Hospices and Palliative Care need to be working closer together when the Hospices do not often provide the medial care.
  • gunits 5 months ago
    My support was my husband, who we also deal with a disease with. No, I knew of none of the above, social worker at hospital was inept. I had her removed from my mothers and I's presence. I turned to a group on facebook from the states. It was a safe place to read that others were going through the same thing. Things to try to ease various aches and pains, foods to try, etc. Nothing was offered here.
  • Hollander 5 months ago
    I was not aware of the above-mentioned on-line resources. Perhaps this information should be made available at all institutions that provide palliative care.
  • plainfancy 5 months ago
    I am aware of many resources, but there are a few issues: 1) finding culturally relevant ones can be a pain. Every site just links to another site which links to another one which links back to the first site and so on...it becomes a tormented circular logic event. 2) I find the same "broad picture" resources whenever I try to find more detailed information. I know broadly what hospice is, but what I want to know is more of the specific FAQ-type information...what is involved with arriving at a palliative care setting, what information should I or my family/SDM have available, etc.
  • fernandlily 5 months ago
    One thing I have found challenging is many of the supportive resources that are listed are not-for-profit - which I see as important because it makes it accessible to many people...BUT, programs that are not for profit or community funded are small and often have a limited reach (for example, one person for an entire region, or online access only). There are many great programs out there that do charge a fee, and yet, they aren't included on any of these resource listings. And, not only that...why aren't programs funded differently to pay for more qualified staff to run them? If we don't start putting money/advertising/training into programs that support caregivers, patients and families, how can we ever expect programs to grow beyond grass roots? I definitely love and use the virtual hospice and mygrief resources, but many people want in-person support and the reality is that in Edmonton and rural alberta there is very very little qualified and free in-person support for caregivers, grief and bereavement. I think when these public listings only include free services, we don't capture the resources that provide excellent support and cost a fee...and when that happens, there is no record of how many people access more support or how much people spend on getting support outside of these free options. One thing is certain about life - everyone will die and everyone will grief. I find it strange that there isn't more funding given to programs to support this universal experience that requires support.
  • ICareBC 5 months ago
    When my mom was dying, the phrase "palliative care" was never mentioned. It was not offered, and I'd never even heard of it. I thought "palliative" just means that someone is dying. Little did I know, that it refers to a fabulous set of caring services that would have been a huge help to my mom and to our family. Now I've learned about Canadian Virtual Hospice, which is a fantastic web site. What I don't understand is why healthcare people don't recommend it routinely! I've told many friends about when they are dealing with serious illnesses in their families, and so far no one has heard of it. Why not? Could it be part of education for nurses and social workers? Could it be part of a public awareness campaign? I think the government paid for the site so why not advertise it like they do with other public service announcements?
  • Midnight1217 6 months ago
    Obviously publicity about these supports is crucial. I work in healthcare for Heaven's sake and have never heard of these. Where are we supposed to find out about them? As the population ages and people look after their spouses/partners and family members many of them are not computer savvy. They won't go looking for these. And when do they have time?
  • cam 6 months ago
    Clearly from many of the comments, people are not aware of the supports available to caregivers. More promotion and education about the benefits of palliative care - for the person with a life-threatening illness and for their caregivers is desperately needed. Each health authority needs to make palliative care a priority in order for greater access. The Canadian government needs to invest in health care so that palliative care is available to the over 70% of Canadians that do not have any form of it in their community. While online resources are helpful, more hospices are needed with their specialized staff and programs that support individuals and care givers.
  • palliumcanada 6 months ago
    Pallium Canada’s community consultations have identified that, generally good resources for caregivers exist across the country, however, there is a need to increase awareness of and access to these resources. Canadian Virtual Hospice, Carers Canada and Mygrief.ca have done excellent work to build resources and strengthen access, however, more needs to be done. Currently, there are many resources that have been developed and produced by a number of different organizations and it can be difficult to both direct the caregiver to the right resources as well as ensure accuracy of resource that may not be regularly updated. Increasing local community support databases (e.g., 211) could be extremely helpful to provide a centralized, just-in-time resource to community caregivers.
  • CanadianVirtualHospice 6 months ago
    Let’s hear it for family and friend caregivers and all they do for the people they care for and for the health care system! Family caregivers deliver the vast majority of palliative care. Often they don’t receive the training or supports they need. Virtual Hospice is committed to putting information and tools in the hands of caregivers to assist them to deliver quality care and help reduce feelings of isolation, at no cost. We (http://virtualhospice.ca) are the most comprehensive website on caregiving when a person has a life-limiting illness or is a senior with complex care needs. A series of caregiving demonstration videos (see bottom of post for link) for common tasks including moving a person up in bed, moving from bed to a wheel chair and giving medications are a popular feature. We address common caregiving questions about symptom management, communication, what to expect as illness progresses and more in our Asked and Answered section. A wide array of articles include topics such as: considerations for a home death, when death is near, spirituality, emotional health, financial support programs and sleeplessness. Our Gallery of videos includes a vast array of topics including caring for a person with dementia, how to advocate for quality care and many other topics. We also enable people to connect with our clinical team who answer questions confidentially through our Ask a Professional service and with a caring community of peer-to-peer support through our Discussion Forums. http://LivingMyCulture.ca empowers caregivers who are Indigenous or immigrants and refugees to advocate for quality care and navigate issues as well as the health system. The vast majority of palliative care is delivered by family caregivers and when developing these tools we work with caregivers from planning through evaluation to ensure we are meeting their needs. Make sure you check out Caregivers Nova Scotia (http://caregiversns.org/), Family Caregivers of British Columbia (https://www.familycaregiversbc.ca/) and Caregivers Alberta (http://www.caregiversalberta.ca/) for their exemplary work. Caregiving demonstration videos: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/The+Gallery.aspx?type=cat&cid=110f65fd-0447-4e6e-b860-7646e02b997b#video_content_index
  • HOME 6 months ago
    Didn't know about online supports.No support or information received from the hospital my mother was in.No counselling of any kind to assist us with the process.Felt she was brought there to die, and just a number. We were treated the same. I /we did not have a good experience with the passing of my mother in the palliative care unit of the hospital.
  • drvho 6 months ago
    Turned to care providers, to family and friends who have gone through the same. VON Hospice and local cancer centre supports. Didn't know about online supports.
  • Brad Inkster 6 months ago
    At the time neither my wife or I were aware of the online support
  • Jashmeister 6 months ago
    I was lucky to find out that a friend of mine was very good friends with the Palliative care doctor at a newly opened hospice. She connected me who expedited getting my Mom into the facility very quickly. No one else I spoke to (family doctor, CCAC Nurse) seemed to know much about the process for accessing hospice care. We were just lucky
  • Marvel 6 months ago
    I turned to the community home care program for information and support (Extramural) in our area in the past which has been developing a better Hospice Palliative Care Program and understanding of the needs of patients, families and the family physicians. Currently the virtual hospice, mygrief, cancer.ca as well as the book title "A carefivers guide" LEAP information, CHPCNG resources and certification for nurses. The scope of resources available are great on line as well as attending local and national conferences.
  • Kacy 6 months ago
    I am familiar with the great online resources that are available and I share that information with the nurses and other health care staff. I frequently hear staff comment that the clients they support can not access these resources as they do not have computers or the internet, nor do they have family members available that can. Our health authoriy has shifted away from having printed brochures and pamphlets on hand so I recommend staff print specific information to bring with them,. We need to be flexible as not everyone has the same needs.
  • yvrpcm 6 months ago
    I think the fact that so few people are currently engaging with these conversations (right here) indicates that there has been poor promotion of palliative care at all levels in Canada.
  • bluejay 6 months ago
    Many caregivers are older individuals who are confused by the internet and on line resources. It is important for service providers to have hard copies of programs available for these individuals. Our hospice services work hard to let our caregivers know what's available out there, but many areas of Canada do not have services as good as ours.
    Hide reply (1)
    • yvrpcm 6 months ago
      Pamphlets and booklets are best in these extreme situations. Older people may not be comfortable with online research and certainly I suspect anyone over 50 is more comfortable with paper that they can write notes on and refer back to easily or at night when they can't sleep! If you can say "I saw something at the top of a left hand page" that helps you find it again - you can't do that online. When I was going through chemo I was very glad for the paper literature - online would have been no good, even though I work in IT.
  • yvrpcm 6 months ago
    8 years ago I had no idea what to expect or where to turn. I simply went with the healthcare system and took what they offered. Now I know a lot more and could probably access more assistance when needed. As the HCP were not answering our questions openly and honestly we were very much in the dark - and knew that. It was day-to-day rather than having a good idea of how things might go. HCP never want to give you best guess information, they always say "everybody is different". But you know that round the water-cooler they could discuss likely outcomes, based on their experience. They really need to share this with the patient and caregiver.Perhaps as part of end of life palliative care there should be an advisor who actually sits down and tells the caregiver and the patient what resources are available in your health region and how to access them (and if indeed you qualify).Promotion of the resources mentioned in this question should be on a level with the promotion of death cafes, death doulas, and ACP. I find the public is hungry for this information and braver than the health care system about addressing it.
  • PH4PC 6 months ago
    4-9 years ago I was not aware of any of these resources. I used 211.ca to find local resources to support me in my community. There needs to be one place to go for supports like CVH and the local community. We need the resource to be linking across the country so I can find resources from Ontario for my parents in NB in the medical and community (ex. meal delivery) stream. Some provinces have provincial databases but they are often out of date. Recently I was searching on a Provincial database for Compassionate Care Benefit info, it stated that a caregiver can apply for 6 weeks of EI funding. See example of local 211 in Halton that has created a specific tab for “Palliative Care/Grief” www.hipinfo.ca This was a Compassionate City partnership with City of Burlington and the database.
  • candysurvey 6 months ago
    As a health care provider I am aware of the resources in my community but still have found "the system" daunting at times to try to navigate. There are many resources available but trying to figure out how to access them can be tricky. We need a broad marketing campaign that encourages people to; talk about death, dying, loss, grief and bereavement; create a will; complete advance care planning work; learn and understand their palliative care options and then finally promote what those options are.
  • alliedhealthworker 6 months ago
    I work in healthcare so I'm familiar with the resources listed. I tend to turn to friends and family for support, and think that promoting a community of caring where open discussions related to dying and death would be helpful (I think this was mentioned in other areas).
    Hide replies (2)
    • admin2 6 months ago
      Thank you for that comment. You may be interested to stay tuned to our last theme of the consultation which is about Community Engagement and Compassionate Communities. It will roll out on July 2nd - I hope you stay with the conversation through until then!Health Canada Team
      • alliedhealthworker 6 months ago
        That's great to hear. I'll definitely stay tuned!
  • respondent 6 months ago
    No, I am not aware of where to turn for support and resources that may help at this time of need.
  • eegr18 6 months ago
    the new online resources through the Canadian Virtual Hospice are invaluable !!!!! I cannot praise them highly enough I also did the old google search and flowed links that lead me to the info i needed and wanted
  • mlppalliativecare 6 months ago
    I had not heard of any of the above. I just went to the Canadian Virtual Hospice site and it looks like an amazing resource. A public awareness advertising/information campaign letting people know that these resources are available would be very helpful.
  • Marnie 6 months ago
    No, I was not aware of Canadian Virtual Hospice, Carers Canada, or Mygrief.ca. Usually, I think, one tries to obtain information from the care centres, hospitals, or doctors; but information is lacking and supports even more lacking. While I am sure that online information is good and helpful, it would be nice if there were more real people to turn to, sigh.
  • 123AbC 6 months ago
    I am always amazed at how few HCP know about the resources in their own communities &/or online. Local residential hospices (if your community is fortunate enough to have one) are a wealth of knowledge for resources.
  • Tsawwassen 6 months ago
    PamphletsRegional health authorityFamiiy physician
  • Richmond patient 6 months ago
    I am not aware of the many on-line resources. Will google for more information.
  • JenniferM 6 months ago
    Hospice society
  • cam 6 months ago
    Our local hospice is a great resource for supports for the patient and caregiver. However, many physicians and health care providers are not aware of the benefits that palliative care offers and do not refer and some might not know that this service is available.