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Imagine a health care world where the term “visiting hours” doesn’t exist and caregivers or family members of people with dementia are invited to stay with their loved one in hospital.
Open visiting hours may still be a work in progress in Ontario, but thanks to a small but very powerful grassroots movement, it’s a reality in over 400 hospitals in the United Kingdom.
The reason? John’s Campaign.
John’s Campaign was born out of Nicci Gerrard’s experience watching her father John’s rapid decline during an extended hospital stay. At 86, John, who had been living with dementia for over a decade, was brought into hospital to be treated for debilitating leg ulcers. During his stay, an outbreak of norovirus within the hospital kept Nicci and the rest of John’s family from visiting. As time went on, John’s cognitive and physical condition began to decline rapidly and he had little contact with any family or friends. Five weeks later, although fully recovered from his leg ulcers, John left the hospital immobile frail and unable to perform even the simplest tasks he had been able to partake in just five weeks earlier.
For Nicci, seeing this change in her father was heartbreaking. However, what was more shocking was just how common this experience was for people living with dementia and their families. Recognizing this as an important issue, Nicci took action.
Fortunately, she didn’t have to look far for a model that works. In the pediatric system, parents are encouraged to stay with their children in hospital to help them feel safe and comfortable in a strange environment. But Nicci wondered: why not take a similar approach for dementia patients who may become confused, scared, or agitated when left alone in hospital?
Like that, John’s Campaign was born.
The premise of the campaign is simple: open visiting hours for people providing care for someone with dementia. Their tagline “Stay With Me” calls for families and caregivers of people with dementia to have the same rights as the parents of sick children, and be allowed to remain in hospital for as many hours as needed. It may sound simple, but for caregivers it makes a world of difference.
“Carers should be allowed to stay with those suffering from dementia. It should not be a duty but an inalienable right, a matter of moral decency and simple human kindness,”
– Nicci Gerrard
While the campaign is primarily centred around an influential presence on Twitter (@JohnCampaign), in just over two years, 407 hospitals have joined a growing coalition that supports a more carer-friendly healthcare environment. Though the Campaign’s main focus is to get hospitals to sign on for open visiting hours, this has also led to a much broader system-wide commitment to recognizing and meeting the needs of carers.
The campaign has achieved such unprecedented success and momentum that in early October 2016 it hosted its first conference. With over 150 health care providers in attendance, and countless caregivers and family supporters, the conference allowed families to share their experiences and unite their voices on the major issues the campaign addresses. It also provided a much needed forum to discuss what’s next for this simple yet transformative cause.
John’s Campaign first came to the attention of The Change Foundation during a recent trip to the UK to meet with caregiver-focused organizations. During the trip, Foundation staff, including President and CEO Cathy Fooks, was struck by the campaign’s power to create system-level change through a grassroots movement.
As The Change Foundation partners with Ontario health care delivery/service organizations to actively integrate, recognize and support caregivers in the important role they play within the health care system, this movement serves as an important reminder of the powerful influence grassroots action can have in shaping and changing formal health care structures.
As long as she can remember Olivia Wyatt has been a caregiver to those around her. She didn’t grow into it and it didn’t come naturally—it was just always part of her.
“It’s hard to remember it coming at all,” says Olivia, 17, “It was just always there. Caregiving was my whole experience.”
Olivia’s caregiving experience is unique due the fact that she is a young carer. Young carers are children, youth, and young adults who provide care and support to a family member with a health issue. It’s estimated that approximately 17% of Ontario caregivers are between the ages of 15 and 24. They are often referred to as an invisible population, as very few people are aware of their situation.
The eldest of four siblings, two of which have Autism and ADHD, Olivia has been the long-time right hand for her mom Lianne, a role which intensified when Olivia’s father Tim was also diagnosed with Autism and ADHD in his 40’s and who suffers from debilitating migraines as a result.
“Olivia was my gift from the universe and my gift to the universe,” says Lianne.
Lianne describes Olivia as fiercely protective of her family, noting that many of Olivia’s friends growing up didn’t understand the need for Olivia to help her brothers off the school bus, or her responsibilities to be at home to assist her mom.
Like many young carers, Olivia has maturity beyond her years, describing her biggest caregiving challenge during high school as simply “staying sane.” To do this, Olivia found solace in drama, which helped to alleviate her anxiety, and also turned to books as a way to escape.
Olivia also found support through the Powerhouse Project, an inter-agency strategy that offers activities and programs for young carers in the Niagara region and Haldimand and Norfolk counties. The Powerhouse Project gives young carers a much needed break from their regular caregiving duties and connects them with young people in similar situations.
“[Powerhouse] is a place where you can just ‘be’ and there are other people who understand,” says Olivia.
Recently eight young carers from the Powerhouse Project, including Olivia, took part in a one-week digital story telling workshop hosted by The Change Foundation in collaboration with Project ReVision, a program of the University of Guelph. Armed with cameras, laptops, and recording equipment, each young carer had the chance to learn and create their own short film about their caregiving experience.
Lianne says this experience opened Olivia’s eyes to a new medium of expression and storytelling.
Now Olivia finds herself at the start of a new experience. After graduating from Laura Secord Secondary School in St. Catharines with a glittering scholastic record (though Olivia is compelled by modesty to mention two B’s in her Grade 12 year), she has just started her first year at Brock University in the Concurrent Education program.
However, with this new opportunity to start making a life on her own, Olivia is also debating whether she wants to caregiving to be part of professional life as well.
But if possessing this foresight, thoughtfulness, and poise say anything about Olivia, it’s that she’s a dynamic young woman and carer with a bright future ahead of her.
For more information on young carers and to watch other videos from Powerhouse Project youth, click here: www.changefoundation.ca/ontario-young-carers.
Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.
Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.
At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.
Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.
Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.
Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.
This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.
Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.
Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.
Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.
With this approach, we can continue to be the catalyst for change in Ontario health care.
Meet Chase. He’s a dare devil. He thrives on adrenaline. No roller coaster is fast enough. He lives for excitement, sometimes waiting at the end of his driveway to wave at all the drivers going by, hoping that they’ll honk their horns in return.
When you pictured Chase, you likely didn’t see a teenage boy in a wheelchair who is non-verbal. Chase was born with cerebral palsy (CP) and needs round-the-clock care.
Now, meet Lisa. Lisa is Chase’s mom and his full-time family caregiver.
From the day that Chase came into Lisa’s life, she has been constantly monitoring and managing Chase’s chest and breathing, contractures and skin integrity, due to his spastic quadriplegia. To help with this, he has a G-tube to vent him and needs lots of re-positioning throughout the day and night.
And, seven years ago, he had intestinal failure which no one expected him to survive. He did, and now his day-to-day care is much more involved. He is TPN dependent and runs an IV for 23.5 hours a day, only unhooked for bathing. The femoral line is in his groin which takes constant monitoring and hyper vigilance with dressing changes once a week. It also means he often has belly pain especially at night.
To most, Chase’s daily caring needs seem overwhelming. But Lisa has a different perspective, “Chase is on this earth for a reason, and I just want to help him enjoy his life and bringing meaning to it.”
Lisa’s caregiving journey hasn’t been an easy one. It’s been full of ups and downs and a never-ending commitment to advocating for the services and supports that Chase needs.
It has taken a financial and physical toll. Based on her caregiving demands, Lisa essentially gave up her career. Lisa wears wrist braces at night from the wear and tear of lifting and caring for him. And, unsurprisingly, she rarely gets a full night’s sleep.
Walking through Strathroy’s small downtown, it doesn’t take long to realize that Lisa and Chase are mini celebrities in their own town. They are shining examples of how one person’s challenges can benefit many others along the way. Put simply, Lisa and Chase are catalysts for positive change.
Take the accessible playground near Chase’s house. Lisa and her husband were on the planning committee that got it built. Or consider the cadre of nurses and PSWs who have provided home care to Chase over the years – they have all gained skills in how to support and care for people with complex health conditions. And probably most importantly, Lisa and Chase have paved the way for many others to have access to self-directed care.
For many years, Chase’s home-based care was coordinated by their local Community Care Access Centre (CCAC). Beyond the administrative challenges of not being able to coordinate care directly with care providers, it also meant that Lisa and her family were opening their home each day to an always-changing group of people. To complicate matters, not all the providers had the skills required to address Chase’s complex needs.
Lisa spent many hours fighting to get self-directed care so she could choose and coordinate which providers care for Chase. “It’s changed our lives,” Lisa explains, “I feel like I have control over our lives for the first time in a long time.”
When you ask Lisa and Chase what keeps them going each day, Lisa is quick to respond, “Happiness and love.”
And when you meet Chase and spend a bit of time with him, the happiness and love he feels comes shining through.
In March 2015, The Change Foundation formally released Out of the Shadows and Into the Circle, its 2015-2020 strategic plan focused on improving the experiences of family caregivers in the Ontario health care system and their interactions with health providers.
The first year of the strategic plan outlined a comprehensive period of research into the existing literature, legislation, and policy documents that currently exist on the stages and experiences attributed to caregiving. As part of this process, Sara Shearkhani worked with The Change Foundation to complete a literature review to summarize and synthesize the last two decades of caregiving research, as well as to reflect on her own experience as a caregiver.
Sara’s experience as both a researcher and a family caregiver helps to bring a unique perspective to the roles and responsibilities inherent in caregiving. Her reflections present a poignant picture of someone wrestling with the evolving real-time experience of being a caregiver, while also finding answers and insight in academic, peer-reviewed literature.
Shedding New Light: One Caregiver’s journey is the result of Sara’s work. It features an executive summary of the comprehensive literature review completed by Sara as well as her reflections on her own caregiving journey. Together, the papers that make up Shedding New Light provide a balanced and comprehensive standpoint on how the role of caregiving can be viewed.
The Change Foundation gratefully acknowledges and thanks Sara for her dedication and thoughtful approach to this work.
For more information, or to access the full literature review, please contact:
Communications at firstname.lastname@example.org
For author and academic Katherine Arnup, her journey as a family caregiver started with a promise to her sister Carol.
The promise had been made in 1990, after Katherine’s mother, her family’s main caregiver and support person, suffered a debilitating brain aneurism.
“She had always been the caregiver. You always knew, even as an adult, you could call her if you had a cold or were sick and she would care,” says Katherine.
Spurred on by this devastating event, and their close sibling relationship, Katherine and Carol pledged that if either became seriously ill, the other would act as caregiver.
“It felt real to say that,” says Katherine, “but I didn’t expect to be called into action quite so soon.”
Just seven years later in January 1997, Carol would be diagnosed with cancer for a third time, and Katherine quickly took on the role she had promised.
Thanks to a sabbatical from Carleton University, Katherine was able to shuttle herself between her home in Ottawa and Toronto on a weekly basis. There, she organized care, prepared food, and spent time with Carol, one of her closest friends.
“I felt like I knew what Carol needed,” says Katherine, “It was our close connection and the love that I had for her that enabled me to clear away everything else in my life so she could get what she needed. Sadly, Carol would progress to end of life care by April, ultimately dying in July 1997.
Through this experience, Katherine found herself occupying multiple roles for her sister. Not only was Katherine one of her sister’s main sources for care, but she was also a confidante and advocate, roles that may not be evident to the broader public.
“For me it just seemed natural,” says Katherine, “However, if people haven’t been a caregiver for someone, I don’t know that they realize they’re going have to advocate in the hospital.”
“[Their loved one] is going to need someone who is willing to go fight for them and raise their concerns and their interests.”
However, Katherine was also forced to face her longstanding fear of death as part of her caregiving journey.
“Death had been scary in the abstract,” says Katherine. “But I knew that I needed to be up for it to be able to help [Carol] and be with her.”
To overcome her fear, and to reassure Carol, Katherine read as much as she could on death and dying, as well as anything on her sister’s disease. Nearing the end, Katherine also found support from Carol’s palliative care nurse, who guided her through Carol’s last days and hours.
In terms of her own health, Katherine made a conscious effort to have dinner with friends in Toronto regularly, and seek out support from friends and family in Ottawa, including her young children.
“[Self-care] was challenging because I had so much on my plate,” says Katherine, “But I knew I needed to eat and I knew I needed to see people to get support.”
Today Katherine is dedicated to sharing her experience with caregivers through lectures and her book “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself.
“I wrote it largely to offer support and help to caregivers and it draws on my experiences caring for my sister and my parents,” says Katherine.
Now a volunteer at Ottawa’s Hospice at May Court, Katherine says the main lesson she’s gained through her caregiving journey is to provide dignity and respect for those you care for.
“It’s important to give the person you care for as much dignity and respect you can. They’re looking for a little control over their lives as they lose a lot of it,” says Katherine.
“It’s the little things that count.”
Katherine Arnup, PhD, is an academic, family caregiver, life coach, and author of “‘I don’t have time for this!’A Compassionate Guide to Caring for Your Parents and Yourself. She will be one of three speakers at The Change Foundation’s Hot Talks on Health event on April 27th.
If our work through The Caring Experience project has shown anything, it’s that no one family caregiver journey is the same. Some journeys can last years, others a matter of months, all with varying intensities. However, one type of caregiving experience that is often invisible is that of young carers – children and young adults providing support or care for a family member.
That’s where The Powerhouse Project by the Young Carers Initiative comes in. The Powerhouse Project offers support programs to young carers in the Niagara Region, as well as Haldimand and Norfolk counties. We sat down with Michelle Lewis, Executive Director of the Powerhouse Project, to learn more about who young carers are and the impact of this essential and wonderful project.
Young carers are children, youth, and young adults who provide care for a family member due to a chronic illness, disability (physical or intellectual), mental health issue, addiction issue, or socioeconomic factor (single parent family, language barrier, etc.).
In addition to a caregiving role, young carers may also experience the emotional impact of a family member needing their support. Young carers may provide personal care, sibling care, financial/practical care, emotional support, complete household chores, and so much more for their relative needing assistance.
The key differences between young carers and adult caregivers is that having the added caregiving responsibilities within the home has been shown to have negative impacts on young carer identity development, social development, academic achievement and psychological well-being as well as to limit opportunities for pursuing education.
I think the most important thing we do at Powerhouse Project is validate the caregiving experience for our young carers and help them understand the importance of their role. By reducing the stigma and negativity around the young carer experience, we can then shift the focus onto their own self-care and that there is nothing wrong with taking time for themselves. We actually have a life skills program called Balance where we teach just that — how to balance all the demands of school, friends, family, with caregiving on top of it all. Time management, stress management, effective communication, and being more self-aware are all a part of the lessons of this program. Our weekly respite program, Carers Night Out, gives young carers in various communities time away from home where they can connect socially with their young carer peers and take time to do age-appropriate activities.
One of the biggest challenges for us is transportation, which is a barrier to service for many of the families we serve. Some of our parents have lost the ability to drive, or don’t own a vehicle, which prevents them from being able to drive their children to programs.
When serving a rural community, the distance between houses can be significant. We do our best to bring programs to the communities where most of our clients reside and use the personal vehicles of staff to provide transportation to those most in need, but our capacity for this is quite limited.
Another challenge for us is identifying young carers. Given that this has been deemed the ‘silent population’ of caregivers, without young carers self-identifying or having someone advocate for them, it is very hard to serve this population. We know there are many more young carers out there. We have worked hard to establish strong referral relationships with key agencies in the communities we serve to assist with identifying young carers. Working with health care professionals is the next desired step for us.
Over the past few years we have been made aware of some of the experiences our young carers have had. For example, one youth had to call 9-1-1 in the middle of the night for his mom and was not allowed to ride in the ambulance, so he was left home, alone. Another youth had to get his mom to the ER knowing she was experiencing anaphylaxis. While in the waiting room, his mom’s condition became critical before he was listened to as he was trying to advocate for his mom as he knew exactly what she needed. One of our young ladies has interpreted for her father at medical appointments for the last 10 years. She has felt respected by the doctors she has interacted with. She has also made suggestions for the design of her father’s prosthetic legs as they cause her pain when she puts them on her father.
However, we are thankful for the opportunity to work with The Change Foundation as this is an area we would like to focus more on.
We are currently creating a strategic plan to map the direction for our organization which will have a large fund development focus. We need to access more funding in order to continue the wonderful path we are on.
There is so much potential and we know there is need for young carer support. To help with this, we will continue to work with Dr. Heather Chalmers in the Department of Child and Youth Studies at Brock University to ensure our services are evidence-based.
For more information on The Powerhouse Project, please visit their website: www.powerhouseproject.ca.
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