In the early days of Courageous Parents Network, I read as much rigorously designed and published research as I could find (and understand) about what means most to parents of seriously ill children: their priorities, their fears and concerns, the help they sought, what helped, what didn’t, the role of palliative care. There wasn’t very much; and thankfully that is changing.
One line of inquiry and published research I found resonated especially with me — the work led by Dr. Pamela Hinds and her colleagues who surveyed and talked with parents of children (with cancer): the notion of what it means to parents to ‘be a good parent.’ I knew that believing I had been a good parent to Cameron helped me live with little regret in the years following her death; and I was curious about what other parents had to say about this and how it would help me unpack my experience.
Fast forward to today: CPN is collaborating with Dr. Hinds and colleagues Dr. Meaghann Weaver and Dr. Lori Wiener to advance the “good parent” research to the next step. We said YES to collaborating because the more that is known about what matters most to parents, the better able medical providers will be to support families. We also believe that the process of answering its questions will actually feel good – good because you will be reflecting on your values and strengths, what matters to you and how you are acting on that with your child.
A few key points:
- The survey is NOT about COVID-19.
- Parents, including several CPN parents, informed the design of the survey, including its questions; and they piloted it too.
- Every individual parent’s response is meaningful. This is less about the number of respondents (though we hope all of you participate) than what each respondent says. In other words, your voice matters.
- There is an option to follow up directly with Dr. Weaver.
- The investigators will share with CPN the summary of the findings. How interesting it will be to see what we have to say!
I thank you in advance for giving your precious time to contribute what you believe. Please know that your thoughtful responses will make a difference down the road.
And now …. Dr. Weaver is herself a mother and a palliative care doctor and has written the following piece to accompany the survey.
by Meaghann Weaver, MD, MPH, FAAP
These are surely unique days. We each parent in unique and special ways based on the unique and special needs of our children. Together, we are collectively parenting from a place of good and loving intentions. Whether we’re making pancakes for a breakfast picnic in the living room or juggling the new teacher-parent home role, the daily actions of parenting represent such a personal and such a profound role.
Our parenting approach is uniquely defined by many forces and factors: the ways we were raised, the ways we wish we were raised, the many responsibilities we juggle as we parent, and the personalities and special needs of our children. Taking a moment to reflect upon the influences in our parenting philosophy and choices can be a moment of self-care as we think of the ways we pour love and good intentions into impacting our children.
While philosophies about parenting may feel personal, the desire to “be a good parent” seems to hold true for all parents as a shared goal. Over a decade ago, parents of children with cancer defined themselves as “trying to be a good parent in making care decisions in the child’s best interest.”1 These parents revealed that they have good intentions to do well for and by their loved children. As each parent brings a special definition of what it meant to be a good parent to their child based, this concept of “being a good parent” is definable, distinct, and dynamic.
As we are each adjusting to a new normal for ourselves, our children, and our communities – we may together consider taking a moment to ponder our personal response to the question, “What does it mean to be a good parent to my child?”.
- Does it mean loving?
- Does it mean listening actively for what my child is or is not expressing?
- Does it mean laughing together even on the hard days?
- Does it mean learning more about my child?
- Does it mean helping others learn more about my child as more than just her diagnosis?
- Does it mean making more lasagna because my child loves Italian food?
- Does it mean leaning in more to advocate for her unique health needs?
We share the survey link below as an opportunity to participate in a research study intended to learn more about: 1) How parents define their own unique Good Parent Beliefs that define their sense of parenting role; 2) How parents perceive their definition of “being a good parent” may stay the same or change over time; 3) And, how parents want medical teams to help support these special “being a good parent” beliefs and roles.
Now, let’s be clear that there is not a secret shadow of the Good Parent Concept. As in, there isn’t a hidden Bad Parent Concept lurking. The Good Parent Concept is one of goodness, self-compassion, and striving to do our best with what each day brings. And, there definitely is not a Perfect Parent Hidden Agenda. When it comes to parenting – good is actually way better for kids and parents and families than perfect! As in, the pancake picnic leaves syrup stains and crumbs because love is authentic and messy and true. And, juggling the parent-teacher role means sometimes just engaging in spontaneous play because while structure is meaningful we also learn through life and the joyful togetherness of living each day’s unfolding.
As we pause to reflect upon our inner definitions of “being a good parent to my child” – what that means for us as parents, what that means for our children, and how health care teams can best support us in that ongoing process – let’s also take a moment to celebrate the ways that we bring our true selves into the noble actions of parenting courageously and lovingly.
Reflecting upon the idea of “being a good parent to my child” is intended to offer a supportive moment to celebrate the beauty, kindness, humor, courage, humility, and self-compassion YOU as an amazing parent uniquely strive to uphold in parenting your amazing child.
Dr. Weaver is the Director of Pediatric Palliative Care at Children’s Hospital and Medical Center, Omaha, NE