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Discussion 6.1: Caregivers and caregiver supports, Grief and Bereavement

6 months ago
CLOSED: This discussion has concluded.

A caregiver, carer or family caregiver is a person who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury or a chronic life-limiting illness.

  • One in four Canadians are caregivers – 54% are women, and 46% are men

  • 50% of caregivers are between the ages of 45 and 65 (their peak earning years)

  • 6.1 million caregivers are juggling caring for loved ones and their careers

  • Caregivers in Canada spent over $12 million in 1 year on expenses related to their caregiving role

    (Carers Canada http://www.carerscanada.ca/carer-facts)

What practices are in place in your organization to support caregivers as important members of the health care team?


This consultation is now closed.


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  • Pallfan2018 over 1 year ago
    Unfortunately, in general there is more lip service paid than actual acceptance of family members as being full members of the health care team. We, culturally, have a long way to go. Having said that, when individuals are accepted in to the palliative care programs in the province, there is more understanding and acceptance of the role of carers and supports are provided based on caregiver needs. The establishment of the Assess Treat and Refer program with EMS is one mechanism used, to address crises that occur in the community and for the most part manage the crisis and arrange supports for the individual to remain in the community. This has been a significant component of caregiver support as they know where to turn if the patient is in distress (which also means the carer is in distress) and gives a mechanism to address issues without turning to an ambulance ride and acute care.
  • CFHI_FCASS over 1 year ago
    In its programming, CFHI enables engagement with patient and family advisors as partners in the design of care and its ongoing quality improvement; there is no more knowledgeable voice about what caregivers need than caregivers themselves. Working systematically with patients and families as partners is an important improvement strategy. Palliative care providers work closely with families as the unit of care and this is an essential strategy for good palliative and end-of-life care. This is however, fundamentally different than systematic, organizational efforts to work with patients and caregivers as partners in system improvement. As a quality improvement organization, CFHI is systematically, and in a coordinated fashion, supporting service provider organizations to implement and sustain patient/family partner models in support of quality improvement.
  • CanadianVirtualHospice over 1 year ago
    Family and friend caregivers should be acknowledged for all they do for the people they care for and for the health care system. The Canadian Virtual Hospice (http://virtualhospice.ca) 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. The caregiver perspective is valued highly and taken into account when developing content. A great deal of the information on the site exists to support caregivers in the different aspects of their caregiving roles, including self-care. From topic articles, to “Asked and Answered”, to caregiving demonstration videos, there are a multitude of resources to enhance caregiver knowledge. When developing new information or tools (such as http://MyGrief.ca, http://KidsGrief.ca, http://LivingMyCulture.ca), experts, family and patients are engaged in the process to make this information relevant for the audience. Canadian Virtual Hospice recognizes the unique needs that caregivers have in providing care for those with life-limiting illness and those nearing end of life.
  • yinyang over 1 year ago
    Lors de la diffusion du Plan de développement 2015-2020 en SPFV, il fut annoncé un financement annuel de 4.5 M$ pour la mise en oeuvre du Programme de soutien aux proches aidants en situation de fin de vie. Ce financement est destiné au soutien des proches aidants afin d'améliorer l'offre de service à domicile et ainsi permettre aux personnes en SPFV qui le désirent de demeurer à domicile le plus longtemps possible. Ce programme de soutien aux proches aidants s'adresse à toute personne qui apporte un soutien significatif continu ou occasionnel à une personne ayant une incapacité dans un contexte de SPFV à domicile. Ce programme concerne particulièrement la fin de vie où l'intensification des soins est généralement plus marquée. L'implication des proches aidants est alors de plus en plus exigeante, l'épuisement est à craindre, et conséquemment l'obligation de transférer la personne en fin de vie dans un milieu de soins.
  • PallRNKaren over 1 year ago
    Unfortunately there are very few supports for the caregivers of our palliative clients. The lack of trained Personal Support Workers for respite does not provide the rest required by the caregivers. We used to be able to provide each caregiver with a bereavement visit but that is now difficult to receive permission for from the LHIN.
  • pcforkids over 1 year ago
    In pediatrics, caregivers are the key to provision of care. This can place a burden on them which is not well acknowledged. When you have a baby you expect to be at home with them for a year. When you have a baby who is very ill, you spend a lot of time in hospital, and if you go home you become a medical caregiver. You may not be able to return to work, which then impacts your family dynamic and income. In our tertiary care center, we have social workers who provide a lot of grief support before death and bereavement support after death, but this in not the case in most places. Currently after a death, many workplaces expect a return to work within days, after what may have been a traumatic experience with illness. Increased community supports are needed. Families who live outside of major urban areas may have few resources to access to allow them to better support their child
  • melmay over 1 year ago
    We have no specific practices in place. We try to recognize and offer solutions whether that is scheduling family or neighbors to help. We can put in short term homemakers for 3 months (our program identifies "Palliative " as having a prognosis of <3mos. Its only a few hours a couple times per week; there is no 24 hour support available in the community. We have large rural areas that have no access to homemakers. Only a couple nursing homes offer respite. Our hospice will look at respite request on an individual bases but not as a blanket rule. Sometimes our families are simply worn out and admission to hospital is the only solution. We do our best with what we have available. We also try to utilize private insurance to its capacity. Many people dont realize what their policies actually will cover.
  • veejay over 1 year ago
    ORN has implemented goals of care discussions with patients and their SDMs who are often their caregivers. Our work is very much patient and family centered as a result and we work towards equipping the families with the tools needed to assist with managing their family member's care. Social workers have session guides that encourage advance care planning and provide tools to enable families to do this. Caregivers need more access to respite stay beds; and funding support for respite care services at home and additional personal support hours for care. This is something we cannot provide
  • livermore over 1 year ago
    help to implement new national standard by CSA on how to develop caregiver friendly workplaces
  • Sarah over 1 year ago
    We offer space and resources to the South Delta Caregivers Group.We purchase the book "A Caregiver's guide - a handbook about end-of-life care" from the Canadian Hospice Palliative Care Association (jointly published with the Order of St.Lazarus) and offer it free to caregivers. We dedicate some volunteer hours and funds to create and deliver "Care at Home" binders to people at home via their community home care offices. This binder is a resource guide as well as a journal for contacts, medication lists, symptoms tracking, and appointments times; to keep track of the numerous pieces of information in one handy place.
  • Sunrise over 1 year ago
    Within our practice we spend time as nurses working with the caregivers to learn about their needs. We strongly encourage the use of respite care that is available to them and openly discuss the need for support of the caregiver in discussions with patients (as most patients are concerned for their caregiver as well). There is support from spiritual care and social work for caregivers as well. Also Caregiver's Nova Scotia is an invaluable resource to connect caregivers to
  • palliumcanada over 1 year ago
    We recognize that informal care often forms 90% of the care for those facing life-threatening diseases and the majority of this responsibility falls on the caregiver. We believe in the idea of a community who can support carers and caregivers, a Compassionate Community, one that recognizes that all-natural cycles of sickness and health, birth and death, and love and loss occur every day within the orbits of its institutions and regular activities. Its residents recognize that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility. Pallium’s Compassionate Community Startup Kit (based on the Compassionate City Charter Framework) is designed to equip communities and community champions across Canada with tools so they can start an initiative appropriate for their own community. Pallium Canada understands that each community is different and this toolkit was designed so that each community can use it according to their needs. Our model focuses on supporting communities to mobilize to provide support for carers and caregivers by but bringing in multiple entities (workplaces, faith communities, schools, etc.) to support carers and caregivers in their own capacity.We believe strongly that provincial, regional and local partnerships are essential to provide effective support for communities and caregivers across the country and we are committed to working with and building these partnerships as we advance our work on Compassionate Communities.
  • jcruikshank over 1 year ago
    The CHPCA attests that caregivers who are better supported, informed and empowered are able to provide better care. We recommend that federal/provincial and territorial governments extend their compassionate care benefit (CCB) programs to include a 2-week bereavement period, and that access to culturally sensitive and language appropriate resources is improved, including online supports.The CHPCA also recommends a targeted education and awareness campaign about the availability of resources for caregivers and healthcare providers to generate more public pressure for caregiver needs. Finally, the CHPCA recommends that an expectation be set at all healthcare levels for providers to assess caregiver quality of life as part of routine practice and to make caregivers aware of tools and resources that exist to support them.
  • alliedhealthworker over 1 year ago
    We often provide support to caregivers through our social workers and spiritual care providers. We maintain lists of bereavement resources and our social workers/spiritual care staff often reach out to caregivers for bereavement support. There are also some pilot caregiver support groups that have recently started at our facility.
  • applebee1 over 1 year ago
    As both a community and residential hospice we offer... Practical Skills for Carers (8 week program), peer support, drop in and closed group grief support. What we'd like to do is mimic the European hospice model and offer short-term respite support for palliative individuals - currently there is no funding available in Ontario for this type of support (out of a residential hospice).
  • NurseDar over 1 year ago
    There is some limited Compassionate leave available in British Columbia to family members and the BC Palliative Benefits program enables home supports to be set-up to help with care. I believe the guidelines for BC Palliative care benefits is being tightened so less will become available than have been in the past. Limiting access to government funded support will have a impact in how much we as organization can offer support caregivers. Hospice must also receive funding from private donations to stay afloat as government and health authority funding is limited hence there have been cuts to the support and grief and bereavement counsellors. This same support is sometimes also needed for the health professional providing the care if it is a difficult situation but that does not seem to be a consideration in our health authority....Police, First Responders and Fire Fighters seem to have this as a priority but not health professionals who often face the trauma of difficult care. Overall not enough consideration is given to supporting caregivers providing palliative care especially at home.
  • PallMedDoc over 1 year ago
    Rural caregivers in our jurisdiction can apply and access palliative specific funding to hire private caregivers to help look after their loved ones near end of life, and allow them to stay at home longer.