Patient centered care: Parent perspective

For the second week of this series on patient-centered care, my focus remains on enhancing patient-centered care. This approach prioritizes the well-being of patients and recognizes the holistic needs of all patients, particularly in the context of pediatrics, where parents play a pivotal role. Parents are the front line of pediatric care and emphasize the importance of family-centered care for children.

It transcends the mere acquiescence to patient demands, requiring a deeper understanding of the concept, which is distinct from on-demand care. As a pediatric ER physician, I've come to appreciate the significance of "dealing with parents" in my role. Just as every patient is unique, every parent brings their own perspective. The art of pediatrics begins with acknowledging the importance of parents alongside the patients when caring for a child.

Allow me to share an early career experience that served as a valuable lesson. It was a busy day in the emergency department (ED), with me managing around 5-7 patients simultaneously. This entailed seeing patients, ordering tests, reviewing results, monitoring patients' progress, and delivering updates and diagnoses. Caring for sick and injured children in a bustling ED, where the cases range from injuries to illnesses, is a true test of multitasking and can be challenging.

On that particular day, I needed to convey test results to two mothers. One child had suffered a simple fall from the monkey bars, resulting in a minor broken arm that required a splint but no surgery or long-term issues. The other case involved a young child with fevers, swollen internal organs, lethargy, and worrisome lab results suggesting a potential cancer diagnosis.

First, I entered the room of the mother with the child who had a broken arm. I showed her the X-rays and conveyed the news of her son's minor injury. Her reaction was one of hysteria, with tears, frantic calls to her husband, and utter devastation. I found myself in full recovery mode, trying to calm her, assuring her that everything was okay, and providing reassurances about their travel plans, among other things. Needless to say, I spent a considerable amount of time consoling her.

The challenge remained; I needed to move to the next room. In this case, I slowed down, took a seat, and carefully explained the findings and my concerns regarding a potential cancer diagnosis in her child. The response from this mother was quite different: "Thank you, Doctor. What do we need to do next?" No tears, no distress, and no need for consoling—she understood the situation and calmly inquired about the plan.

While I could delve into the myriad reasons for the stark contrast between these two scenarios, today, I simply aim to highlight that, especially in pediatrics (and likely in geriatrics as well), we must integrate the caregiver's perspective to genuinely provide patient-centered care.

In this context, one perspective alone, namely my own, may not be adequate. Consequently, I sought the input of some parents to understand what they considered crucial in parent-centered care for their children. Here are a few responses, and I'm grateful to Rita Ho-Bezzola for her assistance in collecting these insights. These are some common themes that emerge when parents are asked about what they desire (and are not in any particular order)

• Advance Information: Parents wish to receive information about what to expect at a medical appointment before the actual appointment. This could be provided through literature or a quick call/email, covering topics such as vaccinations and what the physician will be examining.
• Child Comfort: Parents desire guidance on how to handle a distressed child in a way that doesn't involve restraining them. They also appreciate knowing how to prepare a child for medical procedures and what to expect during these procedures.
• Child-Centered Literature: In local surgical centers, post-operative instructions are often not child-centered, placing the responsibility on parents to figure out how to care for their children post-surgery.
• Access to Pediatricians: Parents often turn to internet searches for minor questions that they would prefer to discuss with a pediatrician. They value better access to pediatricians for their concerns.
• Online Appointment System: Parents prefer pediatrician offices to have an online appointment system, as the current phone-based system often involves long wait times and appointments that are scheduled far in advance.
• Integration for Special Needs Children: For parents of special needs children, they wish for more integration and communication between specialists and pediatricians.
• Communication Between Care Sites: Seamless communication between different care sites is essential. It's frustrating for parents to have to inform their pediatrician about care received at an urgent care facility.
• Mental Health Resources: Parents find pediatric mental health resources to be scarce. They desire a clearer pathway through pediatricians for accessing mental health support, even in affluent neighborhoods.
• Personal Connection: Parents, especially those with children who aren't medically complex, wish for a deeper relationship with their pediatrician or someone in the healthcare field. They seek guidance and support, especially for children approaching puberty.
• Guidance for Sick Children: Parents want guidance on when and where to seek medical care for their sick children. They often feel frustrated when pediatricians refer them to urgent care without clear guidance.
• Easy Access to Key Needs: Parents would like a streamlined process for obtaining essential items from the pediatrician's office, such as medication refills, school and camp forms, and various notes.
• Physician Communication: Parents prefer physicians who ask about their concerns during well-child check-ups. They want visits to be less scripted and the pediatrician to have the time to listen and address their specific concerns.
• Follow-Up: Parents appreciate follow-up calls when their child has been seen and was sick. They find it challenging to reach the office or a nurse for follow-up and suggest the possibility of phone check-ins or virtual visits.
• Continuity of Care: Parents value continuity of care with a pediatrician, as having a consistent healthcare provider helps build a trusted relationship. They want to see their pediatrician or hear from them when their child is born, in the hospital or has chronic disease.

These insights shed light on the diverse and complex requirements and preferences of parents when it comes to ensuring a patient-centered approach to their child's healthcare. They provide valuable perspectives but may not fully represent the needs of all parents, taking into account different demographics and circumstances. Many parents, especially those I encounter in the pediatric emergency department, likely prioritize assistance with transportation, access to primary care through various means, access to translation services for non-English speakers, and support for covering medical expenses, particularly if they are uninsured or refugees who have recently settled in the country and lack access to insurance or healthcare services. These additional aspects emphasize the importance of addressing a broad spectrum of needs to truly achieve patient-centered care.

Considering these common themes, it's crucial to reflect on whether our current healthcare systems are designed to meet these needs. Are our care delivery systems in pediatrics aligned with these priorities? Does the innovation happening in pediatrics adequately address these needs? Moreover, does the existing payment system support and fund the fulfillment of these needs? These are important questions to contemplate as we explore the practical implementation of innovation in pediatrics and ensure it truly meets the requirements and expectations of both parents and children.

Note:?As a reminder this newsletter is written from my experience and perspective.?The newsletter does not imply or relay the opinions of others unless noted.??The intent is to offer an avenue for dialogue and discussion around important topics in healthcare and healthcare innovation from one doctor’s perspective.??I am a physician and so can only write from my perspective.?If you are clinician, provider, nurse or whatever my goal is to enable you to agree or disagree.?I have no intention to suggest or imply that only the physician perspectives matter.??They do matter but as part of a larger dialogue that can foster better health outcomes. Edited with ChatGPT.