By Nadja Reilly, Ph.D.
In this case study I want to introduce you to the Farley family - a family which was thrown into crisis due to a major depressive disorder in the father. By reading about their story, you will learn about the factors and emotions which played a significant role in Mrs. Farley's decision whether she should seek help from her children's pediatrician. You will also learn practical suggestions for how pediatricians can develop a trusting relationship between them and families around mental health concerns. The members of the Farley family were willing to share their story in the hope that other families would not experience the burden of suffering -- in silence, as their family once did.
Father: Mark, 39 year old nurse - born in Boston
Mother: Nancy, 35 year old social worker - born in Costa Rica
William: 5 year old boy - born in Boston
Matthew: 2 year old boy - born in Boston
In March 2005, the Farleys transferred from another pediatric practice, and have been meeting with their current pediatrician for 2 years. The transfer from the previous pediatric practice had come about as a result of their pediatrician's relocation to a different state.
The last two scheduled well-child visits to the current pediatrician occurred in January and February of 2006.
In October, 2006, there was a major crisis in the family. Mark experienced an acute depressive episode, which led to him leaving his job. He had also struggled for the past six years with substance abuse, with particularly high use during the previous 18 months. Substance abuse led to a day treatment program for 2 weeks. Mark was unemployed for three months. For the past two years, the marriage had been under significant strain, but particularly since October, the relationship had been in crisis. There was talk about Mark moving out of the house.
There is a significant family history for depression, anxiety, and substance abuse in both sides of the family.
The children had been doing well and had been meeting all developmental milestones. The older child, William, had a history of asthma, and had experienced 4 sick visits due to wheezing (because of colds) during the previous 5 months.
Nancy was seen individually in a therapy appointment. When discussing the family situation with Nancy, she reported significant worries about her children's understanding of what was happening in the family. She expressed particular concerns about her older son. Finally, she worried about the possibility of a genetic risk the boys might have for depression and substance abuse. She, however, had not shared any of her concerns with her pediatrician, as she reported she did not feel comfortable discussing this information with him.
When asked why she had remained silent about these concerns, Nancy outlined several reasons why she was reluctant to share her family situation and worries with the children's pediatrician. Her thoughts are highlighted in the quotes. Clinical observations and practical suggestions for practitioners follow each quote.
1. "One of the primary reasons I didn't share anything with the pediatrician was because of how our relationship was structured from the beginning."
Nancy described their pediatrician as a very competent, friendly doctor. However, she described him as "very focused on the children as the patients. From the initial meeting, to interviewing, and managing visits, his focus was always on the boys, not the family. Family involvement was more about ideas for intellectual enrichment such as visiting a museum, rather than how we functioned as a unit." It was evident that Nancy felt comfortable with the knowledge and competence of the children's pediatrician, but she did not feel comfortable with their relationship and his understanding of the family dynamics.
When establishing a mutually trusting relationship between a parent and a pediatrician, an important notion to consider is that the relationship should follow a scaffolding model. That is, from the beginning of the relationship, there should be a deliberate attempt from the pediatrician to connect with each family member and understand how the child functions within the family. With this increased knowledge, it is more likely that in times of stress or change, a family will feel more comfortable talking about each member is coping. Such stress might be positive (e.g., expecting a new sibling) or it might be negative, for example, as due to unexpected situations prompted by mental illness in a family member.
A suggestion is that the process of establishing a trusting relationship begins during pre-natal visits when they are available. When families are about to have a child, or when they visit the pediatrician after the child's birth, they are beginning to construct a narrative about the child's life and who will be the supportive and trusted people involved.
When a provider is able to expresses interest in the family as an integrated unit, rather than interest only in the child as the sole patient, it helps the family create a narrative which involves the provider as a key participant. Mental illness is a family illness - it impacts every single member of the family. Therefore, the family's narrative when confronted with mental illness should involve the pediatrician as someone who could help and support the system.
Another important factor to consider when establishing a relationship with a family is the role that culture plays in how family members relate to their health care providers. Nancy was born in Costa Rica and she indicated that in her cultural narrative, "the role of authority figures and doctors is very important in helping families. Physicians are given significant respect, and their advice is often sought out in times of distress." Therefore, understanding the family's cultural background will also be important in establishing a healthy relationship.
2. "I was asked many questions about the children"s physical health " which was great. The problem was that communication around emotional matters was often delivered in the context of a sort of speech " for example, what the "right" thing to do for sleeping troubles is, or how to address difficult eating behaviors. I didn"t know whether he was interested in or curious about what I felt, or whether I had particular concerns about the children"s emotional well-being."
Through Nancy"s comment, we are able to see a glimpse of the difference Nancy noted when talking to her pediatrician about the children"s physical versus emotional matters. While the physical concerns seemed to be carefully discussed and individualized, the emotional concerns seemed to be discussed in a general and non-individualized manner.
Pediatricians may worry that discussing emotional concerns is difficult, or perhaps that they might not know the "right" things to say in response. In fact, responding to emotional concerns that families might raise does not have to be complicated. What families often report is a desire to know that their pediatricians are genuinely interested in them as people " what they think, and how they feel. To achieve this, often simple inviting questions can draw out feelings, which may be right below the surface.
During times when the family is doing well, these questions will be appreciated as gestures of interest and support. During difficult times, these questions might indeed be the needed invitations to proceed with a more serious conversation.
3. "The pediatrician seemed to ask me questions in a very systematic, or programmed way. I was worried about telling him something he might not consider to be the "correct" answer."
Nancy shared a more detailed account of what she meant in the quote above. She indicated that her younger son, Matthew, was having difficulty sleeping through the night and woke frequently during the night. During Matthew"s well child visit, she mentioned this to the pediatrician. He responded by reminding Nancy about the importance of not giving Matthew a bottle in the middle of the night because of the impact on tooth development. He also told her about the Ferber sleep method.
While Nancy knew this to be correct, and she reported it was helpful to have the reminder, she felt that the pediatrician did not acknowledge how difficult it might have been for Nancy to be so tired in the middle of the night and how that impacted the decisions she made.
Nancy went further on to say that she felt that all her emotions were so raw and heightened, that had the pediatrician asked something like, "is it making you tired or stressed to get such little sleep," she would have probably broken down and talked about all the stress she was experiencing, not just with Matthew"s waking, but with the home situation as a whole.
In building a relationship with a family, it is important to acknowledge the realities and challenges of being a parent. Functioning on little or no sleep; managing different temperaments in children; bearing the responsibility for enforcing limits or helping children when they are sick " these factors play enormous roles in how parents respond to their children normally, but especially under times of stress.
What are the lessons?
First, don"t be afraid to ask questions in an open, empathic way. Ask questions in a way that seeks to find out more information about the current situation, without judgment.
Second, resist the urge for immediate problem solving. This often presents a huge challenge, as pediatricians are caring, compassionate providers, and it is very difficult for them to see someone in distress.
However, sometimes the listening process can be as important, if not more so, than the problem solving. There is a real sense of isolation that family members experience when there is mental illness in the family. Whether it is due to shame, fear, or just not knowing what to do, it is easy to feel lost and alone. Careful listening and support can help the family feel less isolated and more accepted.
4. "I didn"t know whether he felt comfortable talking about stress or mental illness. He never mentioned anything related to it during any of our visits. From my part, I was worried about what he would think about us " maybe he would think my husband was a bad father or that I was a bad mother."
For health care providers, one crucial factor in developing a mutually trusting relationship with a family is acknowledging our own personal histories, and how these histories may impact how we address difficult topics. For virtually all practitioners, there are certain topics, which may be particularly difficult to address when working with patients or parents.
For example, for me as a therapist, I know I have to pay particular attention when I work with parents of boys experiencing difficulties because it is hard not to relate it to my own boys. I try to gauge how intrusive a topic might be by the level of extra "chatter" in my head. That is, I refer to the level of distracting thoughts which come into my mind when I try to focus on a conversation with a patient. When I hear extra loud chatter, or too many distracting thoughts, I know I am entering one of my difficult spots. I have to be particularly mindful of this so that the conversation remains about the patient, and not about what I am reminded of.
In the Farley family case, some of the chatter in the pediatrician"s mind might have sounded like this:
"She"s a social worker, I don"t want to sound patronizing by telling her something she already knows."
"I"m embarrassed to talk about this with a colleague."
"How could she not have known about her husband"s drinking?"
However, it is not only the practitioners who hear this "chatter," but also the parents. And when it has to do with mental illness, the "chatter" can be brought on due to stigma. Stigma is often the primary source of reluctance to talk about mental health issues.
Nancy shared some of the chatter she heard, and it was eventually these thoughts that prevented her from sharing her worries with the children"s pediatrician.
"I am a social worker " I should know how to deal with this."
"I should know child development well, and therefore whether the boys are doing ok or not."
"I am worried about what he will think of me."
"I am worried what he will think of my husband and whether he will question his parenting skills."
"I am worried he will think less of our family."
"I am worried he will think my boys" illnesses are all psychosomatic."
"I am worried he"ll think I cannot handle the stress."
The Farley family and I hope this case study has provided some insight into some factors that might impede the development of a trusting relationship between a family and their pediatrician, as well as some helpful strategies for overcoming such barriers. The relationship between a pediatrician and parents can be a powerful and supportive one, and when mental illness concerns arise, the pediatrician can be a significant member of the family"s narrative.
Update: Farley Family, July 2008
Nearly two years have passed since the Farley family was confronted with life-altering crises. Mr. and Mrs. Farley wished to share an update about their situation, as theirs is a story about new beginnings, shifts in perspectives, and hope.
First, an update about the family unit: Mark and Nancy Farley, and the two boys, William and Matthew. Mr. Farley is actively in treatment and recovery, and has been sober for over a year and a half. He has a new job and feels physically and emotionally healthier. While maintaining health is an ongoing process, he is learning new coping skills and is making remarkable improvements. He reports feeling a renewed sense of reconnection with his family and hope for the future. Mrs. Farley and the children are thrilled to have Mr. Farley involved and healthy. The boys are doing well emotionally, socially and academically.
When asked about her relationship with the boys" pediatrician at this time, Nancy reported that it was about the same. For two years the family struggled, but the pediatrician was unaware of any changes or stressors. Now that the family dynamics are different, Nancy took some time to examine the relationship with the pediatrician from another perspective. She now paid attention to ongoing dynamics, interactions, and responses that shaped her relationship with her sons" pediatricians. As in the initial session, Nancy"s thoughts are highlighted in the quotes. Clinical observations and practical suggestions for practitioners follow each quote.
1. "Mark has made a concerted effort to be present at more pediatric visits. During one routine visit, the four of us were in the office (the two parents and the two children) and the doctor came in. He greeted my husband with a handshake and an animated "nice to see you!" but went on with business as usual when it came to my boys and me. I was upset at the end of the visit, but chose not to say anything directly. I even considered changing practitioners, but was worried about how we would be labeled in the office."
During her visit, Nancy shared with me that she felt like the pediatrician"s approach was hierarchical in nature. He seemed to address the father as the decision maker in the family, not really including other members as active participants. While this approach may be quite effective for some families, it is important to take the time to determine which style may be best for different families. For example, in this case, a more inclusive style of interaction, where all family members are invited to participate, would have been more appropriate.
2. "During our well-child visits, our pediatrician took the opportunity to talk to us about developmental expectations and how to promote growth. However, the discussion was not child-centered, but more resource centered. For example, he told us about the Science Museum and about reading books. We left again feeling like we had the yearly "speech."
One of the things that became quite clear during my time with Nancy was that she highly values a family oriented approach, whether from medical practitioners, child care providers, or school staff.
For pediatricians with busy schedules and heavy caseloads, it can understandably be quite challenging to get to know individual aspects and likes/dislikes of every patient. However, inviting family-centered conversation does not have to be so difficult or detail-oriented. Simple questions such as:
"How is the family enjoying the summer?"
"Have you noticed any new areas of interest for the kids? How are you noticing growth in their development in these new areas?
"Are there any new challenges you are facing as a family as a result of now having a child in elementary school and one in middle school?"
Nancy reported that, in essence, her visits with the pediatrician were not remarkably different, whether circumstances were serious or more stable for the family. Nancy struggled, trying to determine which course of action would be best " asking to change their primary care pediatrician, or continue with the relationship. She sought consultation from colleagues, talked to her husband, and thought about her other interactions with other pediatricians from the practice. Eventually, she chose to keep her primary care physician. Why this decision? As she said in her quote, she worried about being labeled as a "difficult or demanding" mom. Instead, she shifted her perspective to think about the areas of strength of the pediatrician, and said she would be more proactive in asking him direct questions should a crisis situation again arise.
The Farley"s shared their experience of meetings with two other pediatricians from the practice. They met with them during sick visits for the children. In summary, here are the characteristics they viewed as helpful in developing what felt to be a supportive relationship with a pediatrician.
1. Greeting and acknowledging everyone in the room during an appointment.
2. Asking for the children"s direct opinions and experiences.
3. Initiating questions and conversations about how the family was coping in light of the particular situation (e.g., Are you having to stay home from work because he cannot go to school? How is his brother feeling? Mom, dad, how are you feeling?)
4. Follow-up phone call to check on child"s progress.
This case ends with a family feeling stronger as a unit, but also stronger in their ability to know what they would like to achieve from a relationship with a provider. They hope their story will prompt other families to think about their own patient-doctor relationships and be active in seeking those qualities which are important to them.
Please enter a search term to begin your search.
I would like to thank the following for their generous support, without whom this web site and training program would not exist: The Sidney R. Baer, Jr. Foundation, The Alden Trust, the Commonwealth of Massachusetts Department of Mental Health, Project INTERFACE (Newton Public Schools and the U.S. Department of Education), the Locke Educational Fund at Newton- Wellesley Hospital, Aetna Health Plan, the Kenneth B. Schwartz Center, and the families of my medical practice.
I hope you find this site useful and encourage any comments.
- Dr. Howard King, M.D.