Research and Scholarship

Developing a Communication Tool for Parents of Children With Severe Neurological Impairment: Connecting Clinicians and Parents on a Deeper Level

Clinicians often view fixing problems as their job, but this is not easy in the case of medically complex children, especially those with severe neurological impairment. Because of their underlying central nervous system disease, these children have problems with feeding, respiratory infections, and mobility. They require a lot of care from their families, presenting challenges and stressors as parents implement extensive, technology-based, medical regimens at home. Treating these children is also challenging for clinicians who may feel a lack of control over medical outcomes which is at odds with their professional identity as “fixers”. They often miss the mark in meeting important needs for the children and their families related to spirituality and values. This mismatch of priorities can lead parents to report poor communication and even conflict with clinicians during times in which they must make critical decisions for their children. 

Treuman Katz Center faculty and palliative care physician Dr. Jori Bogetz wants to change this through her research which focuses on training clinicians to better connect with parents in order to meet not just the medical needs of the patient, but the family’s quality of life needs as well.  During her fellowship at Stanford, she discovered that communication skills are critical to meeting the needs of families and she learned which aspects of communication are most important and what clinicians miss in their training. She found that being able to “sit” with unsolvable problems, listen to people tell their stories, and talk about quality of life considerations are the important details absent from many clinical conversations and that these skills are fundamental to building effective therapeutic relationships with families. Relationship-building is the key ingredient that allows families to feel that they are part of making decisions, that their child’s life is valued, and that they have made good medical choices for their child.

“How do we change the questions that we ask to facilitate quick, efficient, and effective downloading of the family’s values and perspectives”

Dr. Jori Bogetz

In her current research, Jori is exploring both parent and clinician perspectives on relationship building.  For example, she asks parents how they know when they have developed a relationship with a clinician or when they trust that a clinician really understands their perspective. The data gathered will be used to develop strategies and create a relationship-building communication tool to be used by both clinicians and parents of children when they are facing challenging decisions. Jori’s work will help us learn how enhancing communication improves care for children with severe neurological impairments, their families, and other children with complex chronic conditions.

Clinician ability to connect and communicate with families is important as many of these children don’t have the ability to speak due to their illness.  Jori has been able to get to know the children by seeing them through their parent’s eyes.  She envisions a future in which hospital systems are designed to elicit parents’ voices, values, and priorities and to provide a picture of who the child is beyond the hospital bed. Despite their limitations, these children have very meaningful lives and caring for them and their families can be a joyful and meaningful experience for clinicians.

Ultimate Goal

Improving communication and decision-making among parents of children with severe neurological impairment and healthcare professionals.

Primary Collaborators

  • Abby Rosenberg, Benjamin Wilfond, Seattle Children’s Hospital and Research Institute
  • Julie Hauer, Boston Children’s Hospital

Funding

  • Clinical Research Scholars Program, Center for Clinical and Translational Research, Seattle Children’s Research Institute

Representative Publications