Pediatric palliative care focuses on quality of life for the child and the entire family. Thankfully in some communities, depending on the state, it is available IN THE HOME (not just the hospital), for those children who are living and being cared for at home.
CPN’s most recent videos featuring pediatric palliative care nurse Shaelyn help show what palliative care can look like when delivered in the home, where the family is typically in the day-to-day flow of its life. “I metaphorically lie down on the floor with the parents … Seeing them in the home creates that safe space which allows them to be vulnerable.” she says.
(update, september 2019: the research study below is now closed. The lead PI would have CPN parents know — “We would like to say thank you to the Courageous Parents Network for their incredible support of our project. We are so grateful for the interest we have received from across the Network and for the many parents who have participated or who have agreed to participate. Because of your support, we have reached our goals for participation and will be pausing recruitment at this time. Thank you for helping us develop a way to better understand and meet the most important needs of children and families receiving hospice/palliative care at home.”)
If your child and family have benefited from pediatric palliative care or hospice care in the home, we invite you to participate in what we consider an important study, being conducted by the University of Pennsylvania’s School of Nursing. CPN reviewed and commented on the survey as it was being designed: what they are asking about and measuring matters. Below is what you need to know and how to participate.
The input of families is vitally important to the improvement and advancement of the field of palliative care so we encourage you to participate. YOU are the expert in what families need and what helps and what doesn’t, so please channel that expertise and let your opinions be heard so care will improve for others. Such research can help make the case for more, much much needed, community-based palliative care.
Courageous Parents Network
- What are the goals of this study?
The study is hoping to learn what is most important to families caring for children who have received palliative or hospice care at home so that we can improve care for children and families in the future.
- Who can be a part of this study?
Parents of children who are receiving palliative or hospice care at home, or who have received palliative or hospice care at home in the past.
- What will participants be asked to do?
Participants will take a one-time survey on the computer. The survey should take 20 to 30 minutes to complete, but it doesn’t need to be completed all at once. (CPN Comment – we know that feels long but the researchers are being thorough and there is a lot to cover. We encourage you to stick with it).
Responses to survey questions will be confidential and will not be shared with your child’s care team.
- What will participants receive in this study?
Participants who complete the survey will receive a $30 Amazon gift card.
- I want to help. Whom do I call?
Jackie Boyden, MS, MPH, RN – Nurse Researcher