BY COURAGEOUS PARENTS NETWORK

My name is Jackie Boyden and at 22 years of age, I began my nursing career as a pediatric intensive care nurse. I loved the challenging yet fulfilling work of caring for critically ill children and their families. I loved the fast pace of the ICU, as well as the quieter moments of sitting with a parent at their child’s bedside and just being there for them. I loved being able to make a stressful ICU experience (hopefully) a little less stressful, to make the lives of my pediatric patients and their families hopefully a little better during the time they were with us.

I also realized, however, that I didn’t have a way to help my patients and their families as they navigated life outside of the hospital, in their homes and communities. During the next few years, I had the career-changing opportunity to work in the community. While working in a small residential care facility for medically complex children and later in a larger community hospice agency, I was shocked by the difference from my work in the hospital. For example, access to resources and supplies were dramatically different: in the hospital, we would use an oral syringe to administer a medication once and throw it away; in the community, we washed and used the same syringe over and over until we could no longer see the measurement markings. In the hospital, we were surrounded by high-tech machines and equipment, as well as by fellow nurses, doctors, and other expert clinicians, night and day. In the community, particularly during the night shift, I was on my own. No medication pumps beeping, no monitors buzzing, no colleagues from whom to ask for help when, inevitably, challenging situations arose. It was at times stressful, and often lonely, work, but I knew I was fortunate that by 7am, my day shift colleague would come in to relieve me and I could go home to shower and sleep. On my commute home on those mornings, I often wondered about families’ experiences, for whom there was no shift change. For whom there were no nurses and doctors around at all times to lean on. For whom the responsibility of monitoring the beeping and buzzing of their child’s equipment rested solely on their shoulders. I knew that, somehow, we had to try to make it better for these families and for their children at home.

Years later, I am now a nurse researcher at the Children’s Hospital of Philadelphia (CHOP) working with the palliative care team, and I am deeply grateful to be given the chance to try to make it better. I have learned that the first step toward improving care at home is to learn, from families, what they care most about regarding the palliative and hospice care they receive at home. From my previous research study conducted with CHOP and the Courageous Parents Network, parents shared that while there is so much about the palliative and hospice care for their child that they value,  I also learned that there remains significant room for improvement in the care received by many children and families residing at home.

The next step to making care better is gathering information from families about their experiences working with palliative and hospice teams that support their child at home. With the help of CPN families in my previous study, the EXPERIENCE questionnaire was developed that asks about many different aspects of families’ care experiences at home, including their child’s pain and symptom management and emotional support, their experience of support for their other children, and their experience of support for themselves as their child’s caregiver. Parents told us how important it is to have a way to give feedback about their care experiences to their providers. One parent shared with us that, “…it would be a really effective tool… it just gives families…some agency over what’s happening, and I think it’s a good thing.”¹

My hope is that the EXPERIENCE questionnaire can eventually be used by families to share with their palliative or hospice care teams what they are experiencing at home, what they need from their care teams, and how care teams can better support families in caring for their children at home.

I am once again asking for your help to make the EXPERIENCE questionnaire as useful as possible for families to share feedback with their care teams:

• Participants (parents or other family caregivers) must be over the age of 18 and have a child 30 years of age or younger who is currently receiving palliative or hospice care in the home setting and living in the United States.

More specifically, palliative and hospice care is any care your child receives that seeks to relieve the pain, symptoms, or stress of serious illness and improve the quality of life of your child and family members.  This support or your child and family at home may include phone calls, video visits, in-home visits and clinic visits.

• Participants will be asked to complete an online survey, which should take less than 20 minutes.
• Participants will be given an Amazon.com gift card for completing the survey.

If you can help, please contact me (by email boydenj@chop.edu or by phone 267-425-4510) for the survey link.

Thank you so much for your time and consideration! I hope to partner with many of you, the families of the Courageous Parents Network, to continue the work of improving care at home for all children living with serious illnesses and for the families who so lovingly care for them.