The Wates Family
Todd is an 8 year old male diagnosed with cystic fibrosis. He is a patient in the primary care clinic at Hoffington Medical Associates. The parents identify his race as blended.
Todd lives with his parents, Anthony and Sarah Wates. Anthony identifies as African American. Sarah identifies as Native American. Sarah and Anthony lived on a reservation during their pregnancy. A tribal midwife attended Todd’s birth. Sarah breastfed and socialized with other young mothers and children on the reservation.
Todd was raised on the reservation for the first six years of his life. The family moved off the reservation to a town approximately an hour from the reservation for better work opportunities.
Todd’s father works for a local produce delivery company. He is at work by 4:30 a.m. each morning. He works Monday through Friday, and has mandatory overtime on most Saturdays. He generally finishes work at by 11:30 a.m. Todd’s father spends the afternoon with his co-workers. They eat at the Five and Dine, a local diner, and then go to Mac’s Saloon. Todd’s mother is a waitress at the Five and Dine. She drops Todd off at school in the morning and then works until the end of the dinner shift. An older neighbor, a woman form their own reservation, watches Todd and another seven-year old Native American boy while their parents are working.
Todd’s family lives in a first floor apartment in a former industrial area of town. Most of the industries have relocated to other regions, leaving most of the warehouses and production facilities vacant. The family’s apartment has a kitchen, living room, dining space, and one bedroom. Todd sleeps in a playpen in the living room. He often wakes when his father is getting ready for work. Todd’s mother brings Todd into bed with her for the remainder of the night. The apartment is affordable for the family; the monthly rent includes utilities. They have a single vehicle. Todd’s father is picked up by co-workers in the morning and usually drives home with his wife in the evenings.
Todd’s health insurance in provided through Child Primary Health (CPH), a state-based Medicaid program for children under 21 years of age. Todd’s medical expenses are fully covered by CPH.
Presentation of Symptoms
From birth through age 6 years, Todd received medical care on the reservation. At that time, services were provided by midwives, tribal doctors, and a visiting Nurse Practitioner. Todd showed signs of poor growth beginning in infancy. This was blamed upon the mother not having appropriate milk volume during breast-feeding. The infant was converted from breast-feeding to bottle-feeding. As the symptoms continued and Todd had difficulty ingesting the milk, he was diagnosed with acid reflex. At 4 years of age, his problems breathing were diagnosed as asthma.
At the age of 7 years old, Todd was first seen in the clinic for symptoms of respiratory distress. The diagnosis of asthma continued to be a consideration, although the treatment team constructed a broader differential.
At age 8, he was diagnosed with cystic fibrosis. His treatment regimen currently includes:
• Daily nebulizer
• Chest physiotherapy
• Inhalant therapies: bronchodilators; mucolytic; antibiotics; corticosteroids.
• Ibuprofen (as an anti-inflammatory)
Several factors contributed to the delay in diagnosing Todd’s condition. Todd was born on a Native American reservation with a midwife; therefore, he did not receive the same health screening that other children do in the United States, including screening for cystic fibrosis. The differential diagnosis developed for Todd during infancy and toddlerhood did not consider cystic fibrosis due to his racial heritage. Cystic Fibrosis is rare in both Native Americans and African Americans.
In the professional team’s morning meeting, the physician raised a concern with the patient’s history. Cystic fibrosis is generally associated with persons of European decent. There is very low prevalence among Native Americans, African American, and Asians. The current literature also suggests that both parents need to have the cystic fibrosis gene (dominant or recessive) in order for a child to inherit the condition.
The family’s history does not provide a clear understanding of how Todd inherited the condition. The team speculated that there is racial blending somewhere in both families’ histories prior to Anthony and Sarah’s marriage.
MY TASK/INSTRUCTIONS FOR SEGMENT 1:
1.Develop an ECOMAP for Todd based upon the information provided (This is separate from the maximum page limit for the assignment). NOTE: Please do 10 full written pages, but 1 PAGE SLIDE of an ECOMAP.
2. Develop 10 QUESTIONS I would like to ask the family to help clarify information for the ECOMAP. NOTE: Please elaborate on these 10 questions.
3. What is the potential CULTURAL COMPETENCE ISSUES in this scenario? How would I resolve these?
4. I am meeting with Anthony and Sarah in my office at the clinic. What are the THEMES I should explore with them to assess how they are dealing with Todd’s recent diagnosis and the implications for his condition? NOTE: Dear writer, please elaborate in your own words.
5. The team wishes to clarify the family history with respect to cystic fibrosis and now Todd inherited it. This necessitates clarifying the lineage of both families. During a home visit with Sarah and Anthony, I need to pose the question. What is the question I will ask? Use the exact words I would say to the patient/family: NOTE: it may be more than one sentence, or a multi-part question, depending upon my personal style. NOTE: PLEASE USE YOUR OWN JUDGMENT ON THIS QUESTION.
6. During the session exploring their respective lineages, Anthony states that he was raised in foster care until the age of 18 when he became emancipated. He never knew his father. His mother was an only child, so far as Anthony knows. His mother was involved with drugs and was frequently in-and-out of jail. Anthony vaguely remembers living with his maternal grandmother several times when “my mom wasn’t around. Probably because she was in jail.” At the age of 5, he was placed in foster care. He does not know why he did not live with his grandmother after that. He had no visits from either his mother or grandmother. “I don’t know where they might be, or if they are alive or dead. And to be honest, I want nothing to do with them” . My foster parents were good people, and now I have a loving family here. I don’t need those other people.”
7. Sarah then became visibly distressed. Her body language became closed off and she responded in one or two words to questions. Her eyes became focused upon the floor. When asked if she is feeling uncomfortable, Sarah makes the following statement to you:
“My great grandmother was raped when she was young. She was working in the town close to her reservation. It was nighttime and she was walking alone. She was a waitress. Three white men from the diner attacked her, dragged her into the bushes, and raped her. They left her there. The police did nothing nine months later, my grandmother was born.
At the end of the session, Sarah tells me that the story of her grandmother’s rape is very private to her family. Her tone becomes pleading when she says, “You cannot tell anyone this! None of your friends at the clinic! Promise me you will not tell anyone!”
6a. How do you respond to Sarah in this moment? NOTE TO WRITER: PLEASE ELABORATE ON THIS QUESTION. PLEASE BE CREATIVE.
6b. Now that I have this information, what do I share with the health care team? How do I document these findings since it is directly related to the missing information regarding family history and transmission of the cystic fibrosis genes?
Todd is now 15 years old. He is going through the normal physiological and psychological changes associated with puberty and early adolescence. He is continuing his treatment regimen:
• Daily nebulizer
• Chest physiotherapy
• Inhalant therapies: bronchodilators; mucolytic; antibiotics; corticosteroids
• Ibuprofen (as an anti-inflammatory)
As is typical for persons living with cystic fibrosis (CF), Todd experiences exacerbations of his CF, which necessitate hospitalization. Unfortunately, the family does not live close to a children’s hospital, so Todd is place in an adult unit. Most of these hospitalizations have required that Todd be placed in an ICU for a time because of pulmonary function impairment.
Todd is enrolled in the local high school as a sophomore. He periodically misses school due to exacerbations of his cystic fibrosis (CF). He also limited in some of the activities he may participate in, such as school sports. Todd would like to wrestle on the high school team, but has been told by the school district that he cannot compete because of his CF. His guidance counselor has recommend that he instead join the student government and yearbook club. Todd and his parents are very frustrated with the situation, but his parents have not spoken to anyone at the school.
Todd meets with me biweekly in the clinic. When he is hospitalized, I typically arranged to meet with him there if he is able to participate in a counseling session. This is dependent upon his lung capacity and with the approval of the respiratory therapist. Todd is often quiet at the beginning of sessions with you. You recognize he has difficulty articulating his feelings and thoughts. When you reach into the “silence”, he typically engages and is willing to explore his thoughts, feelings, and perceptions to the best of his abilities. You have come to recognize that he responds well to the work when you introduce themes for discussion and activities.
MY TASK/INSTRUCTIONS OF SEGMENT 2:
1. What are the THEMES I should explore with Todd?
2. What are some activities I might introduce to help him explore his thoughts, feelings, and perceptions in relation to the THEMES identified in question 1?