Your Valuable Insights & Thoughtful Responses

What primary benefits do you need?

• Respite, as it is nearly non-existent in PEI. -Parent #1
• As a health care provider, the primary benefit I would want to see is the services being used by families who need it. And for these services to always be available so families don’t have to worry about being refused/cancelled at last minute. -Pediatric RN #1
• Respite care, transition from hospital to home, day visits as well as palliative care. -Pediatric RN #2
• Long term care facilities for children when parents become burnt out. This facility needs to have an open-door policy for families to visit but also take their children home for overnights and weekends. Needs to be flexible with hours. -Parent #2
• Emotional Support: Access to counselling and support groups to help cope with grief and stress. Financial Assistance: Help with medical expenses, transportation, and other costs associated with care. Respite Care. Educational Resources: Information on the child’s condition, treatment options, and care strategies. Holistic Care Services: Access to therapies, such as massage or art therapy, to support the child’s quality of life. Advocacy and Guidance: Assistance navigating this difficult time. -Caregivers

What are your overall thoughts of our center?

• It is a beautiful center that gives us parents a secure safe space where we can find lots of support both physically and emotionally. -Parent #1
• Having a center like this would be an absolute dream! Transitioning my career from an acute care Peds nurse to a hospice Peds nurse is 100% what I want. There is a huge gap in services for our pediatric population that would be filled by having a center like this. -Pediatric RN #1
• Overall, the center seems like it will fill a gap in our health care system that will enable families access to much needed care/ help outside of a hospital setting. It appears to encompass a family approach and not just patient specific needs. -Pediatric RN #2
• It’s a must have for families like mine who are facing burn out from the lack of support on the Island. -Parent #2
• We were over all very impressed with your facility. We felt it was designed with thoughtful consideration to the needs of families and clients. - Caregivers

What related services would you like to see come next?

• A collaboration service that us parents can come to and request information on how to proceed on something, like applying for disability, or other province, private and federal programs. -Parent #1
• Therapeutic day programs such as PD camps when there’s no school; OT/PT services as needed during their stay at the center; grief and bereavement supports for parents/siblings; spiritual care for those that need it; Child Life therapists; Social Workers; expanding Palliative Care services to allow children to palliate at home if that is what the family prefers and supporting them with this (essentially you’d need a pediatric home care liaison nurse of some kind); sibling support group. -Pediatric RN #1
• Services to come next would be Grief support, day programs, sibling activities/supports. -Pediatric RN #2
• Long term care facilities for families that have no support system. Parents who work full time are becoming overwhelmed and exhausted trying to keep up with their everyday lives while caring for their children as their child’s health declines. -Parent #2
• Spiritual Care: Offer access to chaplains or spiritual advisors for those seeking spiritual guidance. Caregiver Support Groups: Create opportunities for caregivers to connect and share experiences. -Caregivers

What can we do to create a more comforting and home-like environment for you?

• Ensuring the persons working at the home is compassionate, and a good listener and providing safe space for what is needed during that time of my families needs. -Parent #1
• There needs to be a mix of essential medical equipment while still allow the space to feel like home. Medical equipment doesn’t always need to be visible, so proper storage for it would be ideal. Rooms should feel like a bedroom, not a hospital room. For those that are there for end-of-life care, having an adjoining family/parent bedroom would be nice as well. Families can still be present but have enough space to get the rest they need when they can. -Pediatric RN #1
• Having real beds for patients and family members. Comfortable bedding, T.V’s. kitchen/ pantry for families to keep food. Sitting/play area for families. A garden area to walk/sit in outside. Programs that include all family members. -Pediatric RN #2
• The space should feel like a second home, not a hospital. Having staff that can handle all medical care is essential for making sure families feel their children are in capable hands. Meaning LPN, RCW, RN. -Parent #2
• Comfortable Decor: a cozy atmosphere. Private Spaces: Ensure rooms have privacy and personal space for families to spend time together. Familiar Items: Encourage families to bring personal belongings, such as photographs, blankets, and favorite items. Flexible Visiting Hours: Allow family and friends to visit at any time, fostering a sense of normalcy. Home-Cooked Meals. Outdoor Spaces: for relaxation and connection with nature. Comfortable Furniture: Provide comfortable seating and sleeping arrangements for families who wish to stay overnight. Personalized Care. Inclusive Activities: Organize activities that encourage family interaction and engagement. -Caregivers

What specific services or support do you think are most important for a pediatric hospice home?

• I believe all of them, but personally respite and end of life care is most important to my family. -Parent #1
• There needs to be a balance of medical supports and social supports. Much like what I’ve mentioned above. -Pediatric RN #1
• Pastoral care, pediatric specific palliative care, child life specialist, music therapy, art therapy, grief supports. -Pediatric RN #2
• All that is listed above! -Parent #2
• Emotional and Psychological Support: Access to child psychologists and counselors for both children and families. Family-Centered Care: Involvement of the entire family in care decisions and support services. Respite Care: Temporary relief for parents and caregivers to manage stress and fatigue. Specialized Medical Care: Access to pediatric specialists who understand the unique needs of children in palliative care. Education and Resources: Information on the child’s condition and care options for parents. Play and Recreational Activities. Spiritual Care. Community Connections. Comfort and Environment -Caregivers

What type of communication would you expect from the hospice staff regarding your child's care?

• Depending on the service I will be using at that time. Respite I might request a daily update, and monthly for the daily activity schedule. -Parent #1
• If I were a hospice staff member, I would hope families would feel comfortable enough to express their needs. I would gladly communicate whatever they wanted to know. -Pediatric RN #1
• Daily calls or daily diaries would be beneficial for families that are utilize respite care. As well as for families of palliative patients that can’t be there during day because of work etc. -Pediatric RN #2
• A daily check in would be lovely. A schedule on monthly activities. Pictures of their children during these activities would be greatly appreciated. -Parent #2
• Clear and Compassionate Updates: Regular, straightforward updates on the child's condition and treatment options, delivered with empathy. Open Dialogue: Opportunities for parents to ask questions and express concerns, ensuring they feel heard and understood. Care Planning Discussions: Collaborative discussions about care goals and preferences, involving the family in decision-making. Educational Information: Resources that explain the child's condition, potential symptoms, and management strategies in understandable language. Emotional Support: Availability of staff to provide emotional support and guidance, addressing both practical and emotional aspects of care. Crisis Communication

How important is it for the hospice to provide emotional and psychological support for both the child and the family?

• This would be the number one support I would expect from all involved. It is very hard to find support or understanding in my community for my family, having a place where people understand and to connect with other families is very important.
• As a health care provider, I think this is just if not more important than the medical care. -Pediatric RN #1
• Any pediatric facility should encompass Family Centered Care. We know care giver health directly impacts the well being of the child and care giver burn out is prominent. -Pediatric RN #2
• Having a professional that understands the parent’s point of view is extremely important. We see the world differently then most parents, and sadly we almost never truly feel understood. -Parent #2
• Emotional and psychological support is vital in helping families cope, promoting well-being, and enhancing the overall care experience during a profoundly challenging time. -Caregivers

How likely would you use our services?

• Very likely! -Parent #1
• Sign me up! -Pediatric RN #1
• Respite for PEI resident and non resident while traveling. End of life care. Day camps. -Pediatric RN #2
• Oh absolutely! -Parent #2
• We would be very likely to use your services. -Caregivers

How important is it for PEI to have a pediatric hospice home?

• This is very important, to be able to have the support where is needed, and respite so I and my family can have the proper rest and recharge what is needed to continue to give my complex needs child the best care possible. -Parent #1
• There are a lot of priorities in health care right now but honestly, this should be high on the list. It is likely the one gap in services that is most needed. -Pediatric RN #1
• Being that the only respite service available is in the hospital setting where availability is an issue due to staffing issues and acuity of the pediatric unit. As well as the risk of introducing other infections to your immunocompromised child as viral infections etc… are common in the hospital setting. It is pertinent that a facility outside the hospital setting with appropriately trained professionals would be available. Taking stress off of the active care setting. Also having a comfortable and private environment for families to spend the last days with their child and allowing them a place to grieve. -Pediatric RN #2
• As a parent of a child with complex needs, this is a must. We are expected to be the parent, a nurse, and in some cases the doctor. The expectations put upon us is overwhelming, emotionally and physically, with little to no help. We can’t keep going like this without burn out or neglecting our own mental health. This needs to be addressed. -Parent #2
• I believe there is currently a gap in services in this area in PEI. A facility Like yours would bring Peace and comfort to many families. -Caregivers

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