When nothing seems to be working

Your patient/client is frustrated.  They feel like they have tried everything.  Their doctor says they are doing all the right things, but they are still experiencing debilitating symptoms with no relief in sight. This can leave them with a sense of hopelessness. As a health and service provider, you may feel helpless to assist them.

While there is no magic spell that will make them feel better, there are a few options to explore.

Seeking a second opinion

It is within their right to seek medical care from a variety of professionals. Some may have different training or more up to date knowledge on brain injury (or brain injury-related medical topics).

If they would like more information about seeking a second opinion, you can share this article with them.

Allied health professionals

Allied health professionals are healthcare and health service providers that are not specifically medical-focused. Allied health professionals include: dental hygienists; laboratory and medical technicians; optometrists; pharmacists; physio and occupational therapists; psychologists; speech-language pathologists and audiologists.

They can provide a range of diagnostic, therapeutic, and support services to aid in their treatment and recovery.

Discuss options with your patient/client and encourage them to consult their physician about the benefits of other therapy options.  Some of these services do not require a physician referral, so be sure to encourage them to do their homework. Not all allied health care providers are covered out of the public health insurance plan, so they may need to rely on their private insurance or pay out of pocket.

Support groups

Encourage your patient/client to seek the support from other people who have been in a similar position as them and have found success with other therapies, treatments, or recovery methods. Brain injury associations across Canada offer groups online and in-person for individuals living with brain injury. Some are geared towards targeted groups such as women, men, and youth. Familiarize yourself with the brain injury associations in your area and the services and programs they provide for individuals with brain injury. Community supports can fill a huge gap that may exist in social and recreational engagement.

Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged for individuals to seek advice and recommendations regarding the diagnosis, treatment, and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:

  • The product or service promises a quick fix
  • Sound too good to be true
  • Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
  • Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
  • The results or recommendations of a product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
  • Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based 

Always proceed with caution and with the advice of your medical team. 

Healthy habits

Nutrition for brain health, healthy sleep, exercise, and mindfulness are important. Visit the section on healthy habits to see how to help your patient/client form better health.

Take a step back

Encourage your patient/client take a step back and slow down.  Sometimes we need to pause and listen to our bodies and look at what may be triggering their symptoms. They may be juggling too many things at once or it could be something in their environment, such as the lighting in their home or office.  It is important to remember that recovery can take time, so they need to be patient and look at the whole picture.

Do something they enjoy

When we are not feeling well, it is hard to focus on the positives. Encourage your patient/client to something they enjoy or that brings them happiness and relaxation. Doing activities that make them feel fulfilled can help in their recovery process.

Become educated on their health

Individuals as much as possible need to become their own health advocates.  While service providers bring knowledge and expertise to treatment and recovery, it is empowering to patients/clients to become as educated as possible on the topics and treatments for brain injury that will help them better communicate with their health team.

Here are some helpful tips you can suggest:

  • Write down some talking point or notes so they don’t forget anything and can speak clearly with the healthcare provider
  • If they have articles or research papers about brain injury they want to share with their clinician, suggest they bring copies to their appointment
  • Use only sources of information that are reputable, credible, and based on evidence. University and medical research centres are examples of reputable sources
  • Encourage them to be open to their clinician’s perspective and knowledge of the topic
  • Take notes (or have someone take notes for them)
  • Ask for more links or resources so they can be more informed

Use their voice

Individuals have a powerful voice as a person with lived experience. Encourage them to use this power to advocate in their community. They can reach out to their local brain injury association to see if they can share their experience and challenges to help others and contribute to advocacy efforts. If they are interested in learning more, direct them to our page on self-advocacy.

Person-centred care sources

[1] Gilbert J. H., Yan J., & Hoffman S. J. (2010). A WHO Report: framework for action on interprofessional education and collaborative practice. Journal of allied health, 39 Suppl 1, 196-197. PMID: 21174039.

[2] Alberta Health Services – Patient & family care

[3] Frampton, S. B., Guastello, S., Hoy, L., Naylor, M., Sheridan, S., & Johnston-Fleece, M. (2017). Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/201701f

[4] Santana, M. J., Mnalili, K., Jolley, R. J., Zelinsky, S., Qu’an, H., & Lu, M. (2018). How to practice person-centered care: A conceptual framework. Health expectations : an international journal of public participation in health care and health policy, 21(2), 429-440.
Https://do I.org/10.1111/hex.12640

[5] Stewart M.A., Brown J. B., Donner A., McWhinney I. R.,  Oates J., Weston W., & Jordan,  J. (2000). The Impact of Patient-centered Care on Outcomes. The Journal of Family Practice. Oct;49(9):796-804. PMID: 11032203.

[6] Frampton, S. B., Guastello, S., Hoy, L., Naylor, M., Sheridan, S., & Johnston-Fleece, M. (2017). Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/201701f

[7] Frampton, S. B., Guastello, S., Hoy, L., Naylor, M., Sheridan, S., & Johnston-Fleece, M. (2017). Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/201701f

[8] Stewart M.A., Brown J. B., Donner A., McWhinney I. R.,  Oates J., Weston W., & Jordan,  J. (2000). The Impact of Patient-centered Care on Outcomes. The Journal of Family Practice. Oct;49(9):796-804. PMID: 11032203.

[9] Epstein, R, M.,  Fiscella, K., Lesser, C. & Stange, K. (2010). Why the Nation Needs a Policy Push for Patient-Centered Health Care. Health affairs (Project Hope). Vol. 29. No. 8. 1489-95. 10.1377/hlthaff.2009.0888

[10] Stewart M.A., Brown J. B., Donner A., McWhinney I. R.,  Oates J., Weston W., & Jordan,  J. (2000). The Impact of Patient-centered Care on Outcomes. The Journal of Family Practice. Oct;49(9):796-804. PMID: 11032203.

The principles of person-centred care

Person-centred care is defined as valuing a patient as a person with unique needs. PCC is understanding their experience and working with them to ensure their care plan is reflective of these individual needs. This includes establishing coordinated care and proper communication. In PCC, patients are encouraged to be involved in their own care and be in partnership with their healthcare team. It is confirming that the “physical, mental, and social well-being” of the patient are encompassed in the health care plan [1].

Most healthcare institutions have policies outlining PCC. Although the majority of the academic discussions surrounding person-centered care reference physicians and nurses, it is important to note that ALL healthcare workers share in the patient experience, regardless of how casual their involvement.

PCC is considered key to a quality health care system. However, without a clear universal definition, it is necessary to understand its key guiding principles: Respect and Dignity, Participation, Collaboration and Information Sharing [2]. Interpreting these principles and putting them into practice are paramount in achieving a successful PCC culture.

Respect & dignity
Person-centred care (PCC) is principled in treating the patient with respect and dignity. It is treating the patient as an individual, exploring their values and beliefs. This includes understanding that their cultural, ethnic, and socioeconomic backgrounds affect their decision-making process, choices, beliefs, and their ability to understand the knowledge you are presenting [3].

As a healthcare provider practicing PCC, you will need the flexibility to meet the person needs cognitively, mentally, and emotionally, and provide compassionate and empathetic care by active listening and asking questions. By including and understanding the patient’s diversity, “including race, ethnicity, gender, sexual identity, religion, age and socio-economic status”, individualized care plans can be created that reflect the patient’s perspective, values, and preferences [4]. Offering respect and dignity reduces judgment and acknowledges that the patient is the expert in their own lives.

Participation
By meeting the patient where they are at, and building on a respectful relationship, the patient will be more encouraged to participate in their care plan and shared decision making. This increased involvement by the patient and the family members is related to improved health outcomes and increased quality of life [5]. Families and friends who are part of the support team of the patient are encouraged to participate in the discussions and treatment plan as well. The patient is encouraged to advise their healthcare team of what is working and what is not, therefore fully participating in the planning, implementation, and evaluation of their treatment plan.

Patient and family engaged care provides better engagement, better decisions, better processes, and better experiences which equate to better culture, better health (reduced hospitalization), and lower costs [6].

Collaboration
For person-centred care (PCC) to be truly effective, multi-sector collaboration is imperative. Access to a patient care plan should be available and utilized across all sectors of the healthcare system. This cross-sector collaboration with multiple healthcare teams and the patient is proven to improve patient health and promote a better healthcare experience [7].  Collaborating with the patient and interdisciplinary teams can reduce the quantity of duplicate testing, required appointments, reduce the time for accessing treatments and improve the patients all around care [8]. This can also reduce the stress on the healthcare providers and the healthcare system as a whole.
Information sharing
Person-centred care (PCC) promotes clear communication and sharing of information between healthcare providers and the patient at a level of understanding that is considerate of the patient’s cognitive, emotional, and developmental abilities. Understanding the patient’s cultural, ethnic, religious, and socioeconomic diversities is also key to assisting the patient in understanding the process of rehabilitation and healing [9].  Active listening and honest communication will help identify goals which match the needs and wants of the patient. As it is encouraged for the patient and families to actively engage in the patient’s care and the decision-making process, establishing honest and accurate communication strategies is essential. When individuals are provided with the appropriate education and information they require to make decisions, they are better able to direct their care and treatment plan.

PCC provides improved health outcomes as patients feel involved and accountable for their treatment and care plan. It eases the pressure on the healthcare system when patients are provided with the services they require. Through interdisciplinary and cross-sector communication, navigating the health care system becomes less complicated, as testing and appointments are minimized.

PCC is associated with less discomfort, less concern, and better mental health, as well as fewer diagnostics and referrals [10] It also contributes to reduced wait times for accessible care, and minimizes unscheduled healthcare visits.

For information on PCC, please review your local, provincial, or federal health authority for additional information and policies.

Additional resources

Encouraging social engagement during isolation

While those living with brain injury experience increased isolation compared to those in the general public, the 2020 COVID-19 pandemic has amplified physical and social isolation. As healthcare treatment and daily operations in communities shifts towards online platforms, patients/clients are spending more time at home. Programs and services that normally would have been a social and recreational outlet have been moved online or deteriorated completely. Patients/clients are missing the person-to-person connections and as a result are experiencing increasing feelings of anxiety and loneliness.

As a service provider, there are ways you can encourage your patients/clients to stay connected with family, friends, and other social groups while protecting their health and the health of others in isolation.

Social media
Social media is one of the most popular ways to stay connected. There are many different platforms that let people follow friends and family, celebrities, brain injury associations, businesses/organizations, and create a newsfeed that keeps them entertained and engaged.

Visual stress is an issue for some people with brain injury, so ensure they are participating in screen time, without aggravating symptoms.  For more information, watch our webinar on visual stress.

Your patient/client may need assistance in setting up their social media, as well as finding who to follow. You can help them put together a list of family and friends and other people of interest.  Encourage them to follow their local brain injury association, as many have moved services online.

While social media is a helpful resource, it can also be overwhelming sometimes. Lots of people are posting about current events and news which can be distressing and mood-altering. It’s helpful to take breaks from that kind of content. Social media can also have an impact on mental health, as people mostly post their positive moments, rather than their lows.  For someone who is feeling anxious or self-conscious, this can be hard to digest.  It is important for patients/clients to know that everyone has bad moments, they just don’t post them on social media. Everything needs to be “taken with a grain of salt”.

Phone calls
Phone calls are a great way to feel closely connected, no matter how much distance separates them from their friends and family. Make sure they are aware of their phone plan and monthly plan limit. If you have interaction or access with family and friends, encourage them to set up a schedule for calls. This can help patients/clients feel less isolated and more supported by their loved ones.
Texting
Most phone plans come with a texting plan. Texts are a great way to do quick check-ins with friends and family. They can also send photos, videos, and other attachments. Make sure they are aware of their phone plan and monthly plan limit.

Texting is handy for those with communication challenges. Dexterity can be an issue for some patients/clients, so show them how to use the voice to text feature on their phone.

Video chats
Video chats have now become the norm. They provide virtual face-to-face contact combined with the immediacy of phone calls. The face-to-face contact can have a huge benefit for those who feel alone. Even if they don’t want to have their camera on, encourage the patient/client’s family and friends to keep theirs on.
Here are some free video chat apps you help them set up and use:

Please note: Most of these video chat platforms require an email address. They will also need a stable internet connection to make or receive calls.

Online message apps
If your patients/clients have friends and family spread out over the country or world, you may want to suggest they try an online messaging app. These have free plans and can fill in when clients/patients have limited data plans for texting/phone calls. Remind the person that the people they want to chat with must also be on the chosen messaging platform.

Options include:

Emails
Emails allow for more immediate communication with the same appeal as letter-writing. It can also be an easy way to share documents if needed. Emails have also become essential for people to be able to create social media profiles, shop online, or access resources.

If they don’t have an email address, they can create one for free on the following platforms:

Letters
For patients/clients that experience cognitive fatigue from digital communication, writing letters is a great way to stay in touch with people. Plus, who doesn’t love to receive a letter? Whether it’s typed or handwritten, having something to open from a friend or family member makes people feel connected. Encourage family and friends to also send letters to your patient/client.
Digital games
Communication can also be fun and games – literally Thanks to the Internet, it’s possible to play group games without having to be in the same room. To save data, encourage patients/clients to play while connected to Wi-Fi.

The following sites and apps allow people to engage virtually to play all kinds of fun games.

  • Pogo – sign up and play tons of classic board games for free
  • If you like more complex role-playing games, try Roll20. Please note: making the account is free, but some features cost money
  • House Party – this is a video chat app you can get on your phone, allowing you to play games on the go with your friends

Cultural intelligence sources

[1] Health Policy Institute, (2004). What is Cultural Competence in Healthcare?

[2] Canadian Medical Protective Association (March, 2014). When medicine and culture intersect.

[3] Díaz, L. (2013). Cultural perceptions of traumatic brain injury and rehabilitation in minorities. Sound neuroscience: An undergraduate neuroscience journal, 1(2), 10.

[4] Díaz, L. (2013). Cultural perceptions of traumatic brain injury and rehabilitation in minorities. Sound neuroscience: An undergraduate neuroscience journal, 1(2), 10.

[5] Smith-Wexler, L. (2014) Cultural Competency in TBI rehabilitation. American Psychological Association: Spotlight on Disability Newsletter, December 2014.

[6] Canadian Medical Protective Association (March, 2014). When medicine and culture intersect.

[7] Health Policy Institute, (2004). What is Cultural Competence in Healthcare?

[8] Seibert, P. S., Stridh-Igo, P., & Zimmerman, C. G. (2002). A checklist to facilitate cultural awareness and sensitivity. Journal of medical ethics, 28(3), 143-146.

[9] Smith-Wexler, L. (2014) Cultural Competency in TBI rehabilitation. American Psychological Association: Spotlight on Disability Newsletter, December 2014.

[10] Díaz, L. (2013). Cultural perceptions of traumatic brain injury and rehabilitation in minorities. Sound neuroscience: An undergraduate neuroscience journal, 1(2), 10.

[11]Seibert, P. S., Stridh-Igo, P., & Zimmerman, C. G. (2002). A checklist to facilitate cultural awareness and sensitivity. Journal of medical ethics, 28(3), 143-146.

[12] Smith-Wexler, L. (2014) Cultural Competency in TBI rehabilitation. American Psychological Association: Spotlight on Disability Newsletter, December 2014.

[13] Betancourt, J. R., Green, A. R., Carrillo, J. E., & Owusu Ananeh-Firempong, I. I. (2016). Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care. Public health reports.

[14] Díaz, L. (2013). Cultural perceptions of traumatic brain injury and rehabilitation in minorities. Sound neuroscience: An undergraduate neuroscience journal, 1(2), 10.

[15] Díaz, L. (2013). Cultural perceptions of traumatic brain injury and rehabilitation in minorities. Sound neuroscience: An undergraduate neuroscience journal, 1(2), 10.

[16] American Association of Colleges of Nursing. (2008). Cultural Competency in Baccalaureate Nursing Education.

Cultural intelligence

Disclaimer: The term cultural competence is used frequently in academic texts, but is an outdated term that is being phased out of everyday culture. To accurately portray the concept of professionals being educated and aware of culture and its impacts on health care, we will be replacing the term ‘cultural competence’ in this article with ‘cultural intelligence’.

The Canadian health care system is witness to a variety of beliefs, values, religions, and social structures. Culture has an impact on our health care system and how we provide healthcare in our communities. It plays a large role in the understanding of illness, treatment, rehabilitation, and family involvement. It also contributes to a person’s decision to seek health care treatment at all.

With the knowledge we have about the role culture plays in a person’s health, there has been a major focus on understanding and implementing cultural intelligence in the delivery of care.

Topics in this section include:


What is cultural intelligence? 

Cultural intelligence (labeled as cultural competence in the following citation) is the “ability to understand and integrate [an individual’s values, beliefs, and behaviours about health and well-being, shaped by various factors such as race, ethnicity, nationality, language, gender, socioeconomic status, physical, and mental ability, sexual orientation and occupation] into the delivery and structure of the health care system” [1].

Awareness of an individual’s cultural and intersectional background allows clinicians, physicians, and all health care providers to better understand a patient’s view on illness and health treatment. This facilitates the use of skills and strategies to develop and implement a rehabilitation plan, producing the best outcomes for the patient [2].

How does culture play a role in rehabilitation? 

An individual’s culture has a great impact on how they approach health care, disability, and rehabilitation. “People from different cultures have unique expectations of what it means to be ill or to have a disability” [3]. Some cultures believe an injury was an act of God while others may believe they have been cursed by an enemy [4].  Culturally specific beliefs regarding treatment also affect the rehabilitation process. Many cultures have traditional methods of healing that are poorly understood or aren’t acknowledged by others. By understanding a patient’s beliefs, values, and expectations, it is possible to “enhance treatment motivations and rehabilitation outcomes” [5].

In order for a health care or service provider to be successful in this aspect of care, they must commit to developing their cultural intelligence.

Cultural intelligence begins with awareness & knowledge

Health care providers can strengthen their cultural intelligence by acknowledging and taking inventory of one’s cultural values, attitudes, and potential biases [6]. By reflecting upon one’s potential biases, we can better understand the impact our culture has on our understanding and beliefs of illness and disability. Cultural intelligence is an ongoing, lifelong process, learned through educational training, and lived experiences [7].

Asking the right questions and seeking out information can assist a health care worker in determining what is important to the patient. This not only helps one understand the patient better, but it also builds a rapport and trust between both parties [8].

Cultural intelligence is not only educating oneself but educating the patient and their families on the illness and treatment options. “Providing tailored knowledge and psycho-education about TBI and rehabilitation to ethnic minorities and their families may be one of the most effective means of improving engagement in treatment and reducing outcome disparities” [9].

Due to different beliefs and interpretations, it is important to ensure the patient understands the treatments available and why they are being suggested or implemented. This education allows the patient to be better informed and make better decisions [10].

It is also important for the health care professional to listen to the patient and take the time to understand their concerns. Cultural intelligence includes taking into account a person’s history with systemic barriers and confronting one’s biases to make sure that a patient’s experience with you is not impacted in those regards.

Communication

Effective and simple communication is imperative in developing trust and building rapport [11]. There can be multiple barriers to communication, including languages and literacy. Additional barriers can include cognitive impairments, vision, auditory, or speech difficulties.

Addressing language and communication barriers has a direct impact on patient trust and health care outcomes [12]. This may include the availability of interpreters, translators, or providing documents available in Braille, with diagrams, or with large lettering.
In many cultures, family and community are extremely influential in a patient’s decision-making process and rehabilitation outcomes [13]. It is equally important to communicate with the patient’s family, friends, and traditional healers if this is requested by the patient.

Effective communication is also demonstrated through active listening. Listening and understanding the patient’s rehabilitation goals and interpretations of treatment is crucial as these may be very different to the westernized healthcare model. Cultural competence understands that rehabilitation is not provided through a template of providers and treatments; it is tailored to the individual, incorporating a mix of healthcare practices.

Individualized rehabilitation plans

Cultural intelligence includes understanding that one person’s experiences and related definitions of health care may be different than the provider’s. “Most cultures have different ideas of what being ill or disabled means, so it is likely the rehabilitation is going to look different depending on cultural background” [14]. It is important to understand “the goal of living an independent life is a westernized ideal and might not be the end goal of minorities from other cultural backgrounds” [15].

Cultural intelligence allows the healthcare worker to ask the right questions, address any concerns, and devise a mutually agreed upon treatment plan “including alternative and complementary therapies” [16], all of which will provide the best outcome for the patient.

A wide variety of therapies may be required in a brain injury rehabilitation plan. These can include physicians, surgeons, neurologists, occupational therapists, physiotherapists, speech-language pathologists, home health support workers, and traditional therapists, to name a few. Collaboration and clear communication between health care providers, the patient, families, and any additional members of the support team is essential in providing the best health outcomes, especially in culturally diverse populations.

Cultural intelligence is an ongoing process of learning and practice. As culture has a direct impact on a patient’s rehabilitation and healthcare outcomes, increasing one’s knowledge, awareness, and communication skills is imperative to developing trust and providing the best possible care.


See sources

Education & Skills training

Professional education builds on the skills and knowledge of health care and service providers, ensuring they have the tools to deliver the best support to those living with brain injury.

Brain Injury Canada has an educational online course library which we continue to grow.

Foundations of Brain Injury for Health Care Providers

An affordable self-paced course designed specifically for health care and service professionals to enhance their knowledge of brain injury, enabling improved, customized and informed care. 




Here are some further courses or resources available across Canada.

CATT Online
The Concussion Awareness Training Tool (CATT) is a series of online educational modules and resources addressing concussion recognition, diagnosis, treatment, and management. Good concussion management is pivotal to minimize the risk of brain damage and may reduce long-term health consequences.

 

CATT has courses for:

  • Medical Professionals
  • Coaches
  • Parents and caregivers
  • School professionals
  • Players or participants
  • Workers and workplaces
  • Women’s support workers

Cost: Free

Ontario Brain Injury Association (OBIA)
OBIA develops, provides, and disseminates information and educational tools that define, discuss, and describe all aspects of acquired brain injury

 

  • Certificate Training Programs: OBIA in collaboration with Brock University has developed certificate training programs to provide professionals with the tools and knowledge to assist clients with recovery and function in everyday life following acquired brain injury.
  • E-learning: The Online Brain Basics Training Program is designed to provide frontline health care workers, caregivers, and others with an understandable introduction to the world of brain injury in an interactive format. This program is also offered in person.
  • Access the courses

Cost: See OBIA for course fees

Centre for Addictions and Mental Health (CAMH)
CAMH’s continuing mental health education provides professionals with the specialized knowledge and skills they need to support mental health illnesses.

 

Cost: See CAMH for course fees

Abused & Brain Injured – ABI toolkit
Abused & Brain Injured was created to draw attention to the intersection of intimate partner violence (IPV) and traumatic brain injury (TBI). This toolkit provides information, resources, research, and practice recommendations for providing trauma-informed service delivery.

 

Cost: FREE

SOAR (Supporting Survivors of Abuse and Brain Injury through Research)
A unique, multi-disciplinary research collaboration between University of British Columbia – Okanagan and Kelowna Women’s Shelter.

 

Information in both French and English.

Cost: Free

Klinic Community Health Centre
The Trauma Toolkit is a resource for service organizations and providers to deliver services that are trauma-informed.

 

Cost: FREE

Canadian Centre for Substance Use and Addiction (CCSA)
CCSA produces a variety of substance use- and addiction-related publications for researchers, policy makers, and health service providers.

 

COST: Free

Communication Disabilities Access Canada
E-learning course: Making your services accessible for people with communication disabilities

 

This webinar is for people who work in organizations and businesses that provide goods and services to the members of the public.  Learn ways to communicate with people who have communication disabilities in face-to-face or telephone interactions, as well as how to host accessible meetings, public events, and provide written information in ways that people can access.
Cost: FREE

Available in English and French

Online Concussion Course from University of Calgary (Massive Open Online Course)
This free course is offered through the University of Calgary and Université Laval to those interested in preventing and managing concussions. This is a non-credit course. It is self-paced, but you may be subject to registration periods.

 

Supporting patients & clients

Supporting patients/clients through diagnosis, treatment, and brain injury recovery is an integral part of effective, conscious care. They will have a lot of questions about brain injury and its effects on their life, and you will be one of the people they turn to for answers. While their questions may not lie in your specialty or may not be medical-focused, you can still offer support through conversation and resources. Here are some resources that you can use to help your patients/clients.

Cultural intelligence
Canada is home to a variety of beliefs, religions, and values. As such, this can impact how a person interacts with the medical sector. Understanding cultural implications to treatment and demonstrating cultural intelligence is valuable in supporting patients/clients.

Encouraging social interaction in isolation
The 2020 COVID-19 pandemic threw a light on the challenges of isolation and social engagement. But for many brain injury survivors, isolation is a norm. If any of your patients/clients are experiencing isolation (or increased isolation due to the pandemic), encourage them to embrace virtual connections.

Health habits
Encouraging patients/clients to maintain or develop healthy habits is an important part of offering support. Make sure they understand the impacts that nutrition and sleep can have on the mind and body, and that there are specialists that can help them.

Person-centred care
Person-centred care is defined as valuing a patient as a person with unique needs. PCC is understanding the patient’s experience and working with them to ensure their care plan is reflective of these individual needs. This includes establishing coordinated care and proper communication. In PCC, patients are encouraged to be involved in their own care and be in partnership with their healthcare team.

When nothing seems to be working
In some cases, it may seem to the patient/client that nothing is working for them. Brain injury is complex, frustrating, and long-term. It’s normal for them to experience obstacles similar to this. Supporting them through this plateau can help both the person and you as you continue to treat them.

Guidelines & Reports

Several groups and organizations in Canada release guidelines and reports on brain injury that work to inform changes in treatment and policy. Please note we have only included evidence-based guidelines and reports. This list will be updated as necessary and is meant to be a starting point comprised of the most commonly referenced resources.


Brain injury guidelines

This section is meant to provide access to some of the evidence-based guidelines available across Canada for healthcare professionals.  We encourage you to bookmark or visit this page to check for updates.

Guideline for Concussion/Mild Traumatic Brain Injury & Prolonged Symptoms 3rd Edition for Adults over 18 years of age
Ontario Neurotrauma Foundation

The Guideline for Concussion/ mTBI and Prolonged Symptoms was developed to improve patient care by creating a framework that can be implemented by healthcare professionals to effectively identify and treat individuals with persistent symptoms following a concussion/mTBI. The third edition of the guideline was published in June 2018 and evolved into a living guideline in 2019.

Features include:

  • Patient and family version for each section of the guideline, containing the key information, and offering resources based on needs identified by persons with concussion
  • A “What’s New” section highlighting recent updates
  • An interactive and searchable platform allowing users to navigate the guideline more efficiently, making it easier for users to find the information they want
Canadian Guideline on Concussion in Sport
Parachute

The Canadian Guideline on Concussion in Sport has been developed to ensure that athletes with a suspected concussion receive timely and appropriate care, and proper management to allow them to return to their sport.

Living Guideline for Diagnosing and Managing Pediatric Concussion
Ontario Neurotrauma Foundation

The Living Guideline for Diagnosing and Managing Pediatric Concussion was released in September 2019. This guideline was developed to enable healthcare practitioners to identify and treat youth and children (aged 5-18) experiencing prolonged symptoms following a concussion/mTBI. The guideline was also developed with intent to educate parents and individuals working in community settings with children and youth who have sustained concussion/mTBI. The living guideline format allows for real-time updates based on new evidence.

INESSS-ONF Guideline for Rehabilitation of Adults with Moderate-to-Severe TBI
Ontario Neurotrauma Foundation

In partnership with Institut national d’excellence en santé et en services sociaux (INESSS), ONF guides the development, and supports implementation of the guideline for the rehabilitation of adults with moderate-to-severe TBI in Ontario and Quebec. The Guideline for Rehabilitation of Adults with Moderate-to-Severe TBI provides recommendations for front-line clinicians, program coordinators, and managers working in rehabilitation settings. The INESSS-ONF Guideline can also be of use for community-based rehabilitation, within organizations or for rehabilitation provided in home environments. In 2019 the guideline became a living guideline and any updates will be identified in a “What’s New” section.

Evidence-based Review of Acquired Brain Injury (ERABI)
ERABI is currently in its 12th edition and is used internationally to educate and inform clinicians about the latest rehabilitation research evidence. ERABI is led by an internationally recognized team of clinicians, researchers, and staff all with the goal of improving patient outcomes through research evidence.

Clinical Best Practice Guidelines: Preventing Falls and Reducing Injury from Falls Fourth Edition
Registered Nurses’ Association of Ontario

The purpose of this guideline is to outline evidence-based approaches for preventing falls and reducing fall-related injuries.

Stroke Best Practices
Heart and Stroke Foundation of Canada

The Canadian Stroke Best Practice Recommendations (CSBPR) are intended to provide up-to-date evidence-based guidelines for the prevention and management of stroke and to promote optimal recovery and reintegration for people who have experienced stroke (patients, families, and informal caregivers).


Brain injury reports

This section is meant to provide access to health care professionals to some national reports available across Canada.  This is not an exhaustive list and we encourage you to bookmark or visit this page often, as it will be updated frequently.

COVID-19 reports
Injury in review, 2020 edition: Spotlight on traumatic brain injuries across the life course
Government of Canada

The third report of the Public Health Agency of Canada’s (PHAC) Injury in Review series, providing important national surveillance statistics on the causes of traumatic brain injuries (TBI) across the life course, including sports, seniors’ falls, assaults, consumer products, and more.

At-a-glance – Traumatic brain injury management in Canada: changing patterns of care
Public Health Agency of Canada

Examines data from the Canadian Community Health Survey (years 2005, 2009, and 2014) among all respondents ages 12 years and older. TBI management characteristics examined included access to care within 48 hours of injury, point of care, hospital admission, and follow-up.

National Population Health Study of Neurological Conditions
Public Health Agency of Canada and Neurological Health Charities Canada

The $15 million, four-year (2009-2013) National Population Health Study of Neurological Conditions (the Study) represents Canada’s first-ever population health study of neurological conditions. The Study was designed to address the lack of information about brain conditions in Canada.  Findings are intended to inform Canadians and governing bodies about the impact these conditions have on affected individuals, families, and the health care system, and inform future program and policy development.

Changing Directions, Changing Lives: The Mental Health Strategy for Canada
Mental Health Commission of Canada

Changing Directions, Changing Lives is the first mental health strategy for Canada. It aims to help improve the mental health and well-being of all people living in Canada, and to create a mental health system that can truly meet the needs of people living with mental health problems and illnesses and their families.

Towards Creating a Mental Health Action Plan for Canada. Roundtable Report—2015
Mental Health Commission of Canada

The discussions were structured around the six strategic directions from the Mental Health Strategy for Canada. With the help of a facilitator, 29 individuals representing a cross-section of the mental health sector took part in a series of lengthy and detailed discussions in small groups, reporting back to the room at large after each discussion.

Safeguarding the mental health of health care workers
HealthCareCan and Mental Health Commission of Canada

A joint issue brief on protecting the health and safety of healthcare providers, outlining the need to address the physical health and safety of health care workers and workplaces, as well as the equally important and urgent need to safeguard their psychological health and safety.

The State of Homelessness in Canada 2016
Canadian Observatory on Homelessness, Canadian Alliance to End Homelessness

The State of Homelessness in Canada 2016 provides a roadmap for the way forward on the systemic issue of homelessness. Includes a series of joint recommendations – drafted by the Canadian Observatory on Homelessness and the Canadian Alliance to end Homelessness – for the National Housing Strategy.

Additional resources

Compassion fatigue

Healthcare clinicians and service/support workers are on the frontline of helping individuals and families living with brain injury. They play an essential role in helping patients/clients with their rehabilitation, recovery and in some cases with everyday tasks. Some providers work out of hospitals or other centres, while others are immersed in their patient/clients’ home. 

While stress is a part of most jobs, it is highly prevalent in the healthcare sector.

What is burnout?

Burnout is the term used to describe a state of total exhaustion caused by work or project-related stress. It has profound physical, mental, and emotional consequences that result in a person being unable to cope with the demands being placed upon them personally and professionally. People in high-stress, emotionally complex fields such as healthcare are particularly susceptible to burnout.

  • Over 40% of Canadian physicians report that they are in the advanced stages of burnout
  • Over 40% of Canadian nurses report burnout
  • 14% of general nurses have tested positive for symptoms of post-traumatic stress disorder 
  • Healthcare workers are 1.5 times more likely to be off work due to illness or disability than people in all other sectors [1] 

Working with clients or patients can be very rewarding, but over time can take a toll on your health. While your focus is on the patients’ needs, you often overlook your own self-care. There are a few steps you can take to ensure self-care is also a priority, including:

  • Don’t check emails outside of work time if possible
  • Eat properly and drink plenty of water
  • Find activities that bring you happiness
  • Keep your work within the scope of what you can provide
  • Leave work behind when you go home
  • Maintain your own physical and mental health
  • Make healthy sleep a priority
  • Practice mindfulness and meditation
  • Rely on your co-workers or supervisor/manager for support when you need it
  • Set boundaries, and learn to say no if you don’t have the capacity to take on extra responsibility at the time
  • Take breaks during work to relax and regenerate
  • Take vacations or holidays

Compassion fatigue

While focusing on prevention and self-care is essential, sometimes it is not enough to prevent compassion fatigue. Compassion fatigue, otherwise known as vicarious trauma or secondary traumatic stress refers to the emotional and physical exhaustion that can affect healthcare professionals and caregivers over time. The pressure of caring for others can become overwhelming, especially since self-care often gets neglected by those in caregiving positions. Eventually compassion fatigue can set it, causing mental, physical, and emotional health problems – it may even cause you to struggle with compassion for others [2].

Recognizing the signs and seeking help or other interventions are key to reducing the impact and coping with compassion fatigue. Some of the warning signs of compassion fatigue include [3]:

  • Difficulty concentrating, focusing or making decisions
  • Difficulty sleeping and nightmares
  • Feeling detached from our surroundings or from our physical or emotional experience
  • Feeling emotionally, psychologically or physically exhausted, burnt out or numb
  • Feeling hypersensitive or insensitive to stories we hear
  • Feeling less efficient or productive at work
  • Feeling overwhelmed, hopeless, helpless or powerless when hearing of others’ suffering
  • Feelings of anger, irritability, sadness and anxiety
  • Limited tolerance for stress
  • Physical symptoms such as nausea, dizziness, headaches
  • Reduced empathy
  • Reduced pleasure in activities we used to enjoy
  • Relationship conflict
  • Self-isolation and withdrawal
  • Self-medicating and increase in substance use

Tips for coping with compassion fatigue

Coping with compassion fatigue is important – if it isn’t acknowledged and managed, it can impact your ability to continue doing your job and helping others.

Recognize the signs and address it

While there is no simple fix for compassion fatigue, ignoring the symptoms or pushing through will not help – it will only make it worse. It’s important to know the signs and acknowledge it. Talk about it with your employer, your family or friends. It’s the first step towards helping yourself.

Practice good self-care

Many people who work as caregivers or in compassionate professions often put themselves last. But self-care is an incredibly important part of health and wellness. If you aren’t taking care of yourself, you won’t be able to take care of others as well. Some ways you can prioritize self-care include:

  • Drinking lots of water
  • Eating well
  • Getting plenty of sleep
  • Meditation
  • Meeting with a therapist
  • Setting aside time for yourself each day
Set boundaries that work for you

It’s normal to want to ‘do it all’ and be there for others – but if everyone else is taking up your mental, emotional and physical capacity, there’s nothing left for you. This is why you need to set boundaries that work for you. Don’t be afraid to say no, take frequent breaks, and talk to your employer about mental health days.

It may also be helpful to break up your work day, so you don’t doo too much of one task. For example, focus on patients in the morning, and other tasks in the afternoon.

Identify what causes your compassion fatigue

Compassion fatigue will be brought on by different things for different people. By understanding and recognizing what can bring on compassion fatigue, you can address it before it becomes a problem.

Build a support system

No one does anything alone and coping with compassion fatigue shouldn’t be done alone either. A support system of friends, family and co-workers can help you cope and aid you in preventing compassion fatigue in the future. As difficult as it might feel, having other people care about you gives you the break you need to continue doing your job.

Celebrate your successes

When you’re busy focusing on others, it’s easy to let your successes slip by. Don’t let that happen – instead, celebrate them! Acknowledging your victories will make you feel good and create room for you to focus on yourself.

Resources


See sources