Many caregivers are overwhelmed in their role – unsure of where to get information and anxious about what the future holds. They’re frustrated, worried and many find it difficult to cope.
Caregiving impacts the caregiver’s health and wellness, employment, finances and personal relationships. And, they often find it hard to ask for help.
As a healthcare provider, you can make a meaningful difference in the caregiving experience.
Caregivers as Partners
In Canada, caregivers provide roughly three quarters of all patient care.
While the majority of caregivers recognize that they are not the most important member of the healthcare team, they do know they play a significant role. They are partners in care. Luckily, many believe healthcare providers also see them in this light.
Most caregivers see themselves as fully or partially responsible for organizing the circle of care, including accessing community and/or home care, medical equipment and financial aid. They also connect the dots between providers and others who help provide care. While this organizing is not seen as a difficult task, half do admit feeling overwhelmed by it.
You can better support caregivers by recognizing them as partners in care, demonstrating respect for their knowledge and insight into the patient’s experience and empathy for the challenges they face.
You can further your skills by enrolling in the Caregivers as Partners Learning Suite – Education for healthcare providers. This self-learning program has been certified by several accreditation bodies and can be used for professional development credits. Module topics include: understanding the role of caregivers, communicating with caregivers, and empowering caregivers.
- Navigating Roles and the System
Communicating with Caregivers
As a healthcare provider, you can recognize caregivers and incorporate these practices as part of your interactions with them:
1. Identify caregivers and include them as part of the healthcare team. They are your partner in providing care.
2. Ask caregivers how they’re doing. This is their #1 request. Few people ask how the caregiver is doing which contributes to feelings of despair and isolation. This simple question alone can make a difference.
3. Tell caregivers what’s happening and what they can expect next. Caregivers are anxious about the patient’s prognosis and what the future holds. Knowing what’s going to happen next can help relieve their anxiety and help them plan ahead.
5. Help connect them to resources. Inform them of local programs and services, and direct them to the Ontario Caregiver Helpline for further information.
4. Encourage caregivers to accept help. Caregivers often find it hard to ask for help and feel they should be able to manage this responsibility on their own. The reality is that caregivers who don’t seek or accept support are at high risk of caregiver burnout.
6. Encourage them to talk to someone about their feelings. It’s not always easy for caregivers to share. Confiding in you and/or a mental health professional is a first step and can help relieve anxiety and feelings of isolation.
7. Re-visit this conversation throughout their journey. It may take time for caregivers to seek or accept help for themselves.
List based on the Time to Talk toolkit from The Change Foundation’s Connecting the Dots for Caregivers initiative.
Health Record Sharing
Your patient’s caregiver is often responsible for maintaining records and is a key resource in cross-provider communication, making them your partner in providing continuity of care. It is important that you share all relevant health information with them, in addition to what they need to know to help provide care outside of a health facility. It is also imperative that you document important information shared by the caregiver that is pertinent to the patient’s care.
Ask your patient and caregiver if they have the patient’s written consent for their caregiver to receive their healthcare information. If they would like to do so, help them complete a Consent to Disclose Personal Health Information form. Make a note of the caregiver’s name, contact information and patient consent on the patient’s Electronic Medical Record (EMR) and in any facility software or database (Meditech, Patient Keeper, etc.).
To help the caregiver keep track of and manage information, you can recommend that they use a Care Binder. (link) The binder can also help improve communication among care team members, with sections to track medications, appointments and to document questions the caregiver may have.
If you’d like an example, review the Caregiver Communication Toolkit from the pilot project at Seaforth Community Hospital and the Huron Perth Healthcare Alliance through the Connecting the Dots for Caregivers project.
Including Caregivers in Transition and Discharge Planning
Most caregivers have been in the situation of having to transition their family member/friend from the care of one provider to another in the past year. Transitioning between primary care and other physicians or between facilities is not seen as particularly difficult. However, moving from a specialist to another type of care, and between home and a facility are more difficult. Bringing them home from a facility without home care help is particularly hard, as it requires special arrangements to cover caregiving and other life responsibilities.
You can facilitate safe discharges by promoting that caregivers and patients both receive the education they need – whether that’s related to nursing, medication management, physiotherapy, occupational therapy, diet, etc. Caregiver involvement creates better health outcomes for the patient and reduces hospital readmissions.
Use a Discharge Education Checklist and provide a copy for caregivers to add to their Care Binder.
Discharge Education Checklist created by St. Joseph’s Health Care London.
Mental Health of Caregivers
While many caregivers find their role rewarding, previous research from Health Quality Ontario has shown that one in four caregivers are experiencing distress, anger or depression and according to CIHI research, nearly half (45%) of caregivers of those with dementia are experiencing distress.
A new opinion poll from OCO indicates that 46% of caregivers who support someone with a mental health challenge are not handling the situation well. 57% say they are not coping well emotionally and 47% say they are not coping well physically. A strong majority agree they often feel anxious or worried (87%), overwhelmed (85%), frustrated, helpless and trapped (82%) and are getting disturbed sleep (80%).
The Ontario Caregiver Organization (OCO) wanted to dig deeper to better understand mental well-being and the factors that contribute to caregiver distress, anxiety and depression. The results are shared through the Caring for the Mental Health of Caregivers Wishlist. The Wishlist reveals what caregivers believe, if addressed, can improve their own mental health.
The summary of our findings is based on the analysis of data from interviews and surveys of more than 1,000 Ontario caregivers including caregivers of those who support a child or youth with mental health issues and those who support an adult with mental health challenges.
Here are some of the most common and important wishes of caregivers for healthcare providers to consider:
- Greater Empathy and Respect – They want to be a partner and contribute to the decision-making and care planning.
- Help Navigating the Health Care System – Caregivers want help so that navigation is easier and more efficient. Some don’t know where to start at all.
- Easier Access to Information and Resources – Caregivers want the right information at the right time about the person they care for and resources for their care but also for themselves.
- Timely Access to Services – Wait lists are long – Caregivers want the person they care for to have timely access to care.
- Caregiver Mental Health Support – Caregivers recognize the need to care for themselves. They see counselling, peer support groups and respite as key ways to take care of their own mental health needs.
We encourage you to discuss mental health and wellness with caregivers, and to consider what areas of the Wishlist you can work to address as a healthcare professional.
Helping Young Caregivers
Young caregivers or carers are children, youth and young adults (under age 24) who provide care for a sibling, parent or grandparent. They are often a hidden and at-risk-group of caregivers, helping a family member with a chronic illness, disability (physical or intellectual), mental health, addiction, or socioeconomic factor (single parent family, language barrier, etc.). In order to thrive, they need to be recognized and supported.
See Young Caregivers for more information on identifying and supporting this group.
Here are a variety of other resources that may be of interest to healthcare providers:
Caregiver Support Framework (Alzheimer Society York Region)
A planning tool for healthcare providers.
Organizing Your Practice to Support Family Caregivers: A Toolkit for Doctors
Toolkit created by Doctors of British Columbia.
Caregiver-Friendly Pharmacy Training Course
Through Teva, Pharmacists can access an accredited 3 module training program on how to better support caregivers.
Bilingual resource hub for caregivers and healthcare providers in the addiction and mental health system across Cornwall, Stormont, Dundas, Glengarry and Akwesasne in Ontario.
Connecting the Dots
For providers in Huron & Perth counties.
Changing Your Lens
Provides a practical guide to help professionals support parents of children with medical complexities. Includes a Francophone Toolbox that facilitates partnership between organizations and caregivers (a partnership between CHEO, Pinecrest- Queensway Community Health Centre, and Children’s Healthcare Canada).
Discovery Toolkit for Supporting Family Caregivers of Seniors
Includes tools for learning and discussion – slide presentations, handouts and suggested resources.
Establishing collaborative initiatives between mental health and primary care services for Aboriginal peoples
Toolkit to support and enhance the relationships and collaboration between health care providers, consumers, families and caregivers.
Health Service Co-design Toolkit
Provides practical tools for working effectively with patients and family caregivers in healthcare service improvement work (developed by the Waitemata District Health Board in New Zealand).
Next Steps in Care
Provides easy-to-use guides to help family caregivers and healthcare providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patient (a program of the United Hospital Fund, USA).