Coaching – Families with Medical Concerns

Written by Linda Molina, Senior Case Coordinator, Mecklenburg County CDSA

Early intervention professionals strive to support families in a variety of ways that relate to their child’s development and ability to participate in the family’s everyday activities. Families will frequently bring up concerns about their child’s health since medical issues can directly impact participation in daily routines and progress in the child’s overall development. Similar to how we support families in addressing their priorities around making daily routines more successful, we can coach families in such a way that can ultimately increase parents’ confidence and competence in obtaining medical care for their child.

If this sounds like something different from helping a family enjoy a meal together, a good place to start is to reference the Roadmaps for Reflection created by the Family, Infant and Preschool Program, or FIPP, in Morganton, NC. The Roadmap for Reflection is a conversation guide to help us engage in more coaching interactions with the family to “reflect” on and improve the situation. Here are a few examples of concerns that families often bring up during visits:

Concern #1: The child had a recent doctor appointment, but the family did not feel like the doctor was able to address their concern.

Concern #2: The child was recently given a new diagnosis, and the parents are not sure what it means for their child.

Concern #3: The child has missed a lot of doctor appointments due to lack of transportation or difficulty keeping track of multiple appointments.

The first step would be to learn more about the family’s concern or priority.  You might say, “Tell me more about what is happening.”  The next step would be to gather more information. You could start by finding out what the family’s understanding is of the situation or diagnosis by asking, “What was happening during the appointment?” or “What attempts have you made to address your concerns, and how successful were they?”  These questions can help us to have a better understanding of and validate what the family has already tried, what they already know, and what has worked or not worked. Families also have the opportunity to reflect on their own abilities and knowledge, increasing their self-awareness and self-confidence.

After gathering more information, you can brainstorm some ideas with the family of where to go next. It’s important to note that, at this stage, you would first ask the family if they have thought of anything else that they were planning to try before sharing new information because the family may come up with some excellent strategies on their own. When families share their own thoughts about where to go next, it’s important to support them in their plans before sharing additional information with them. When they have exhausted their resources and strategies, we could then ask them if it’s ok to share our own experiences and/or knowledge to help come up with possible next steps. Here are a few examples of strategies that might be helpful to share with families at this point in the conversation:

Concern #1: The child had a doctor appointment, but the family did not feel like the doctor was able to address their concern.

• Writing a list of questions before going to the appointment;
• Taking someone with them to the appointment, such as a family friend or close relative (so at least one person can listen while the other cares for the child);
• Requesting with the doctor’s office that an interpreter be available for the appointment;
• Asking the doctor questions until they feel they have the information needed to move forward;
• Communicating with the doctor any concerns or beliefs that would keep them from following through with the doctor’s recommendations to see if there would be any alternative treatments; or
• Obtaining a second opinion.

Concern #2: The child was recently given a new diagnosis, and they are not sure what it means for their child.

• Being linked with other families.

Families talking to other families with similar concerns can obtain information and support. You could link families with another family (adhering to confidentially guidelines for both families) and/or look within their local community for agencies that have the capability of linking families. Early childhood professionals can also share information about local and national organizations that are specific to the diagnosis or concern.

• Gathering research based information about their child’s diagnosis.

Being fully informed helps early childhood professionals to better guide the family on where to go next. A professional working with the family can gather and study past and current medical records, talk to other professionals that work with the child and/or are familiar with the medical concern, and research the concern to get a better understanding to help the family access and understand information specific to the diagnosis.

Concern #3: The child has missed a lot of doctor appointments due to lack of transportation or difficulty keeping track of multiple appointments.

• Reviewing natural supports that they may have that can assist them with transportation;
• Looking within their local community for agencies that can assist with transportation;  or
• Being linked with community agencies that provide a more direct approach to helping families to access medical care.

After brainstorming these different ideas, you can create a joint plan with the family on what they will do next. When facilitating joint planning, you may remind the family of a few ideas that were discussed during the conversation. Then you might ask the family the following questions: “What are your thoughts on the ideas we discussed today?” or “What do you plan to do next?” Identifying what your role will be in helping them to complete their plan will also help. You can set this up in such a way that the family understands that they are the ones making the ultimate decisions, and you are there as a support if needed. You can then set a time for when to revisit the topic with the family to find out what they ultimately decided to do and what the outcome was.

When we coach families, encouraging them to reflect on their own situation and come up with their own action plan helps them to build skills that they can use later. They are more likely to implement a plan if they are the ones making the ultimate decisions in accordance to their own priorities.

For those families in Mecklenburg County, North Carolina, we are fortunate to have various community resources available to assist with accessing medical care (listed below). Check to see if your community has similar resources.

Family Support Network of North Carolina
Medicaid transportation (including via taxi) or CATS special transportation
Mecklenburg County Health Department Care Coordination for Children (CC4C)