Hello, dear reader!

This is my first column for Healthy Debate as a Patient Navigator. This column will be devoted to providing patients with information to help them through their journey with the health-care system and answering your questions.

Here’s a bit about me: I have been a patient partner at The Ottawa Hospital and Ottawa Hospital Research Institute since 2017, and have joined a variety of governance boards that work on patient and caregiver engagement such as the Patient Advisors Network, the Ontario Health East Region Patient and Family Advisory Council and the Equity in Health Systems Lab.

My journey as a patient partner started much before 2017 though. When I was a teenager, I was diagnosed with a cholesteatoma, a rare and chronic disease that causes the development of fatty tumors in the middle ear. I have had multiple surgeries to try to fix it but will need regular follow-ups to monitor whether the tumor returns. Because of this, I also live with an invisible disability since I have essentially become functionally deaf in one ear and often rely on a hearing aid when I navigate the world.

Having undergone three surgeries in my adolescent years, it was my experience undergoing surgery for an acute hand and wrist injury following a jet ski accident as an adult that was the catalyst for my decision to become a patient partner. There was an intriguing contrast between how I was cared for at two different health-care institutions, my age being the deciding factor at which hospital I went to (a children’s hospital or an adult one).

The most memorable example was how, as a teenager or child, you were never left alone before surgery, and nurses and staff took all the time necessary to comfort me and answer my (and my family’s) questions. I also remember how right before putting me to sleep, the whole staff initiated a surgical pause and introduced themselves and explained to me what their role was during my surgery.

None of that happened as an adult. I was left in a hallway while the operating theater was prepared, anxious and alone with staff walking by not even batting an eye. My questions felt like an annoyance to the care team; as soon as I was wheeled onto the operating room table, the anesthetist quickly put me to sleep. I didn’t even have the time to see who else was there.

Now don’t get me wrong: I am incredibly appreciative with the quality of care I received, but it was the everyday interactions with the care teams that I felt could be improved. And so, while I was recovering from that surgery, I looked for a way to help other patients and the hospital improve its care. I discovered the hospital’s patient engagement program, applied, and the rest is history!

Since then, I have worked on a host of patient-centered policy and research projects and fervently advocate that surgical teams adopt a more compassionate approach with patients before and after surgery.

I’d be happy to talk a bit more about my journey if you ask, but with that out of the way … Welcome to our first patient navigator column about patient engagement.

Conceptualizing the continuum of Patient Engagement

In the context of Canadian health care, patient engagement is a multifaceted concept that involves active collaboration between patients, caregivers, health-care providers and researchers. It involves patients and caregivers as active contributors in decision-making processes, health-care services and medical research. Though the concept is not new, the paradigm shift toward patient engagement in Canada started around 2010.

I like to conceptualize the different levels of patient engagement as a measure of the strength of the relationship between patients and their interlocutors – whether it’s a healthcare provider, administrator or researcher – charted against the duration of the engagement or the scope of input required from the patient.

Defining different levels of Patient Engagement

Following the continuum, let’s begin by defining different levels of patient engagement. Bear in mind that these definitions can vary from one organization to another but are useful in generally labelling the level of patient engagement a project has achieved (or wishes to achieve).

Patient involvement: If the strength of the relationship between patients and their interlocutors is minimal and not time consuming or too onerous, then perhaps it can be categorized as patient involvement. This applies to many instances of transactional engagement.

Patient advisory/consulting: Right in the middle of our continuum, patients can find themselves engaging in patient advisory or consulting work, where projects are limited in scope and duration or complexity, and the relationship is not as profound as a partnership.

Patient partnership: The stronger the relationship is between the patient and their interlocutor, and the longer the engagement activity lasts or how much input the patient is providing, the more this situation can be categorized as patient partnership. It is the inverse of patient involvement.

Examples of the different levels of Patient Engagement

Let’s pretend you are accompanying a loved one to an appointment to manage a kidney disease, requiring them to undergo dialysis treatment. We’ll use this scenario to exemplify what label could be used to describe the level of engagement.

Patient involvement: In our case, if your loved one – or you – fills out a satisfaction or feedback survey about your experience in the waiting room and all that needed to be done was to hand it back to the clerk or care team, then, at a basic level, you could likely label this interaction as a form of patient involvement. It can also involve open consultations around a design of a new look and feel for a hospital, or the understandability of a survey or communications product. Interactions with the care team, administrators or researchers are minimal and often transactional.

Patient advisory/consulting: If your loved one was asked for more detailed information about survey results over the course of a few meetings, this could represent patient advisory/consulting. This could mean that patients meet with program administrators and care providers and share their insights on how things can be improved. It essentially involves patients providing advice to health-care institutions from the perspective of patients, their family members and caregivers.

Patient advisors or consultants are often appointed by hospitals or academic institutions to offer insights at multiple stages of health-care delivery and research. They can help pilot an initiative based on that feedback or evaluate whether the new solutions are working. Often patient advisors are engaged in smaller-term individual projects and meet with the project team as regularly as required.

Patient partnership: Going above and beyond patient advisory, if patients have built a trusting relationship with their care team or administrators, they could feel comfortable enough to partner with them and initiate a project of their own. This could be for a project in which they study a different form of treatment to improve patient-centered outcomes (like the time it takes to feel “normal” following a session); it could be working together to identify and remove barriers for other patients that need to access that type of care. These projects are not fulfilled overnight, but require a collaborative, longstanding and trusting relationship between patients and health-care providers, administrators or researchers. It ensures that patients, regardless of severity or chronicity of their illness, can meaningfully contribute their experiences to aid in improving patient care, or develop or implement policies, pilots or research projects from start to finish.

It is leveraging that lived and living experience to its full extent and having the patient partner involved as an equal voice in the decision-making process for a project – over many months, usually – that the engagement could be labeled a partnership.

Last words

The point of this column will be to answer or explore issues or questions related to patient engagement, health communications or even provide some thoughts on how to handle a particular situation.

I would be happy to collect your questions and feedback at any time, which will help inform future columns. Just email me at max@le-co.ca or connect with me on social media (Linked In, X / Twitter).

It’s not easy to navigate our health-care systems, but you are not alone.

This article is republished from healthydebate under a Creative Commons license. Read the original article.

Tasha Werner, 43, gets up at 3:30 a.m. twice a week for her part-time job at a fitness centre in Calgary. After a five-hour shift, she is back home by 9 a.m. to homeschool her two children, aged 9 and 12. The hardest part of her position – stay-at-home mom, homeschool teacher and part-time worker – is the downtime “lost from my life,” says Werner.

A study by Howard M. Kravitz, a psychiatrist in Chicago, showed that up to 60 per cent of women experience sleep disorders due to hormonal changes linked to menopause. But there is an increasing prevalence of insomnia symptoms in women that may be attributed, in part, to societal changes.

“We live in a world that didn’t exist a generation ago. Now everyone is trying to figure it out,” says Michael Grandner, director of the Sleep and Health Research Program at the University of Arizona.

While women are no longer expected to stay at home, many who are employed outside the home also have the primary responsibility for family matters. And women aged 40 to 60 commonly fall within the “sandwich generation,” caring for both children and parents.

As women juggle their responsibilities, these duties can take a toll, both emotionally and practically.

Both Werner and her husband were raised in traditional homes; their mothers stayed at home to oversee childcare, cooking, grocery shopping and household duties. Initially, Werner and her husband followed a similar path, mirroring their parents’ lives as homemakers. “I think we just fell into what we were used to,” says Werner.

However, a notable shift in their family dynamics occurred once she started working outside the home.

Her children’s physical needs and illnesses have had major consequences on her sleep. If one of the children is sick with the flu, that’s “a week of not a lot of sleep during the night,” she says, “because that’s my job.” Many nights, she finds herself waking up between 1 a.m. and 3 a.m., worrying about how the kids are doing academically or behaviourally.

“We face a specific set of anxieties and a different set of pressures than men,” says Emma Kobil, who has been a therapist in Denver, Colo., for 15 years and is now an insomnia coach. There is so much pressure to be everything as a woman – to be an amazing homemaker and worker while maintaining a hot-rocking body and having a cool personality, to “be the cool mom but also the CEO, to follow your dreams and be the boss b****,” says Kobil.

And there’s an appeal to that concept. Daughters grow up viewing their moms as superwomen juggling responsibilities. But what isn’t always obvious are the challenges women face while managing their lives and the health issues they may encounter.

A study revealed that women are 41 per cent more at risk of insomnia than men.

A thorough study revealed that women are 41 per cent more at risk of insomnia than men. Beyond menopausal hormonal shifts, societal pressures, maternal concerns and the challenge of balancing multiple roles contribute to women’s increased susceptibility to insomnia.

Cyndi Aarrestad, 57, lives on a farm in Saskatchewan with her husband, Denis. Now an empty nester, Aarrestad fills her time working on the farm, keeping house, volunteering at her church and managing her small woodworking business. And she struggles with sleep.

Despite implementing some remedies, including stretching, drinking calming teas and rubbing her feet before bed, Aarrestad says achieving restful sleep has remained elusive for the past decade.

Two primary factors contribute to her sleep challenges — her inability to quiet her mind and hormonal hot flashes due to menopause. Faced with family and outside commitments, Aarrestad finds it challenging to escape night time’s mental chatter. “It’s a mom thing for me … I can’t quite shut it off.” Even as her children transitioned to young adulthood and moved out, the worries persisted, highlighting the lasting concerns moms have about their kids’ jobs, relationships and overall well-being.

Therapist Kobil says that every woman she’s ever worked with experiences this pressure to do everything, to be perfect. These women feel like they’re not measuring up. They’re encouraged to take on other people’s burdens; to be the confidante and the saviour in many ways; to sacrifice themselves. Sleep disruptions simply reflect the consequences of this pressure.

“They’re trying to fit 20 hours in a 24-hour day, and it doesn’t work,” says Grandner, the sleep specialist.

Grandner says that consistently sleeping six hours or less as an adult makes one 55 per cent more likely to become obese, 20 per cent more likely to develop high blood pressure, and 30 per cent more likely to develop Type 2 diabetes if you didn’t have it already. This lack of sleep makes you more likely to catch the flu. It makes vaccines less effective, and it increases your likelihood of developing depression and anxiety.

When is the time to change? Yesterday. Grandner warns that the sleep sacrifices made at a young age impact health later. But it’s never too late to make changes, he says, and “you do the best with what you’ve got.”

Kobil suggests a practical approach for women struggling with sleep. She emphasizes understanding that sleeplessness isn’t a threat and encourages a shift in mindset about being awake. Instead of fighting sleeplessness, she advises treating oneself kindly, recognizing the difficulty.

Kobil recommends creating a simple playbook with comforting activities for awake moments during the night. Just as you would comfort a child who’s afraid, she suggests being gentle with yourself, gradually changing the perception of wakefulness into a positive experience.

This article is republished from HealthyDebate under a Creative Commons license. Read the original article.