It is common in pediatric medical settings, as in the broader
culture of medicine, to understand the healthcare disciplines as
modes of professional practice, but uncommon for parenting
to be acknowledged as a practice. Even in healthcare systems
that routinely proclaim their family-centeredness, it is unusual
for the knowledge and expertise of parents to be granted the
moral weight and cultural respect connected to practice.
Yet, parenting is indeed a practice, drawing from a rich
storehouse of learning that includes observation, experiential
learning, and the generational transfer of knowledge. Parents
invest in their practices by adopting a range of learning
strategies – seeking out mentors, learning collaboratively with
peers, and reflecting upon their accumulated tacit knowledge.
This investment is heightened in families of children with
chronic illnesses and disabilities, given the higher stakes
involved. These parents routinely become skillful at advocating
for their child, navigating complex medical systems, and
making complex, ethically challenging healthcare decisions.
The strength and depth of this kind of parental practice is
captured in the following account by a parent from our faculty
team (MC), whose daughter recently graduated from high
When my daughter was one year old, I was told she
would never have children of her own, go to college
or live independently. All my dreams were destroyed
in a twenty-minute office visit. That conversation was
also the beginning of my becoming an expert, both
in terms of understanding my daughter’s physical
and developmental disabilities, and in terms of
knowing her as a unique human being – a funny
and courageous kid, talented artist, lover of animals,
and the foundation of our family. Our clinicians
understand some pieces of the puzzle; I understand
many others. More and more, our relationships with
the medical team are fueled by mutual respect. When
that happens, I can relax a bit, knowing that my
daughter will get what she needs from all of us.
In our work developing educational programs focused on
difficult conversations in pediatric settings (Browning et al.
2007; Meyer et al. 2009), we have been committed to
highlighting parental knowledge in a number of ways,
including employing parents as medical educators. As a
result, our thinking has changed markedly about the ways in
which healthcare practitioners and parent practitioners can
learn from each other and how to craft robust educational
approaches to address the chronic and complex healthcare
needs of children in the twenty-first century.
D. M. Browning, M. Comeau, S. Kishimoto
P. Varrin, E. Ward, A. Rider, & E. C. Meyer
Institute for Professionalism and Ethical Practice
Children’s Hospital Boston
One Autumn Street, Suite 416
Boston, MA 02215, USA
Browning DM, Meyer EC, Truog RD, Solomon MZ. 2007. Difficult
conversations in health care: Cultivating relational learning to address
the hidden curriculum. Acad Med 82:905–913.
Meyer EC, Sellers DE, Browning DM, McGuffie K, Solomon MZ, Truog RD.
2009. Difficult conversations: Improving communication skills and
relational abilities in health care. Pediat Critical Care Med 10:352–359.
Letters to the Editor