Support & Information
B Brave recognizes that healthcare professionals who feel empowered and well supported are able to better meet the needs of the patient and their family.
We strive to bridge the gaps with resources and support, including:
- Practical expertise that informs and empowers families
- Financial support for families
- Downloadable guides
- Comfort Cart
- Caregiver Appreciation program
- Advocacy and awareness
Working with Newly Diagnosed Families
It is daunting to tell families their child has a degenerative neurological disorder, especially when the diagnosis is incurable. B Brave can help make those tough conversations more productive and effective. We cannot take their pain away but we can be sensitive, attentive to needs and be honest.
Compassionate and adaptive care is not a cure, but it usually eases families’ distress, delivering lasting positive effects. Demonstrating unconditional empathy and openness help comfort families and let them be honest with their feelings and wishes — it gives them a measure of control in a situation where they are almost powerless.
While most healthcare is focused on cures, treating a child with a rare, incurable neurological disorder is a unique challenge. Healthcare professionals who have difficult conversations with families make a huge difference. Avoiding often difficult and heartbreaking conversations can slow the coping process for families, inhibiting their ability to make important decisions. Speak to parents often and non-judgmentally. Although medical professionals are experts in healthcare, there are no experts in such difficult situations. The important thing is to strive to deliver empathy and open communications.
Working with Newly Bereaved Families
Nothing is more devastating than losing a child. Along with the usual symptoms and stages of grief, parental bereavement has a host of additional challenges. Feelings of loneliness and isolation are common, so it’s important that we confront illness, death and dying directly to remove the stigma that can leave so many families feeling alone.
Some healthcare professionals strive to be unemotional in a professional setting, but it’s human and important to express your feelings with a warm gesture or comment that shows that you care.
B Brave foundation created the guide below for professionals seeking to provide the most effective approach and best possible care in these fragile situations.
Ongoing Support: Improving the Care Model
Few children are as vulnerable as those fighting these illnesses. Children with incurable neurological diseases usually face many symptoms and problems with multiple organ systems, requiring the work of many sub-specialists. Because most physicians have an instinct to treat every symptom, their lives and those of their families can easily become consumed with costly hospital stays that reduce the quality of life and keep families apart and stressed.
Caring for these children is a complex challenge not only because their illnesses lead to numerous medical needs but also because the healthcare system is not well equipped to handle incurable illness in children. Various specialists focused narrowly on one issue can lead to fragmented care that does not account for the whole picture of the patient and family experience. Patients and their families may not feel fully understood. Busy, overloaded doctors can’t take the time to learn the nuances of every rare disease, creating gaps in care that can’t be met by a conventional hospital care model.
B Brave Foundation is working with healthcare professionals, providing support and resources to enable at-home care, and coordinated and patient-centric care. The goal is to improve the quality of life for these patients and their families. We seek to build bridges to a brighter, more compassionate and caring future for these children and their families. Contact us to see how you, your team and your organization can partner with us or to learn about our approach
Caregiver Appreciation Program
The Caregiver Appreciation Program is a gesture of thanks to those who do so much for affected children and families. If you know of someone on your team, or a coordinating healthcare team, who would benefit from this encouragement and support, B Brave’s Caregiver Appreciation Program is a way to humbly recognize those remarkable professionals with gift cards for coffee or snacks, or an item from the B Brave shop.
To help us sustain this important program, please donate
Use this form to request a comfort cart for your hospital or clinic.