Seventy CMC were observed for a median period of 535 days (range: 24 to 1,158 days). Seven children (10%) died during the observation period. Demographic characteristics of CMC were - sex: 34 boys (49%) and 36 girls (51%); median age 5 years (range: 6 months to 18 years); insurance: 68 (97%) had Medicaid and 2 (3%) were uninsured; residence: 56 (80%) urban, 9 (13%) rural and 5 (7%) suburban. Health conditions were: chromosomal abnormality 15 (21%); other genetic conditions 23 (33%); neuromuscular disorders 8 (12%); prematurity 5 (7%); anoxic brain injury 11 (16%); others 8 (11%). Major themes identified that are related to communication are presented below. Illustrative quotes from care coordinator interviews/ notes of care coordinators are in italics. Numbers represent a child’s unique identification number.
Theme 1: Spanish-speaking caregivers of CMC faced many communication challenges, primarily because of language barrier.
Most caregivers faced challenges in communication with healthcare providers. Language barrier was an important contributor of challenges to in-person, telephone, and written communications.
In the hospital and clinic settings, in-person or telephone interpreters were used by healthcare providers; but this did not occur consistently. Interpreters were not readily available in community agencies (e.g. pharmacy, home health nursing agency, equipment company etc.). Without interpreters, caregivers communicated by resorting to gestures, or soliciting the help of English-speaking family members.
Patient’s parents don’t speak much English, so at first they communicated with their providers mostly through hand gestures. [Coordinator quote about C08]
Phone calls to and from healthcare providers or agency representatives were frequent sources of miscommunication for families. Phone messages were most often left for families in English. Caregivers did not understand the messages and were not able to call back for clarification. Interpreters were used infrequently for phone interactions and, as such, caregivers were often confused about the content of the phone calls. Caregivers also experienced difficulty when making phone calls to providers because those who were answering the phone were English speakers. Additionally, they had difficulty navigating the phone instructions and prompts in English. Caregivers did not feel empowered to request an interpreter if one was not offered. In some cases, even if caregivers requested interpreter help for phone communication, this service was not provided.
Language played a role in the pharmacy issue; mother cannot get interpreters to call her back to refill a prescription [Coordinator quote about C06]
Mother receives a call from Equipment Company in English, confused about the meaning [Encounter log for C17]
Language barrier was also a significant problem in written communications. Medication instructions were sometimes provided in English. Caregivers received appointment reminders or other documents in English and were not always able to decipher them. Other times, results of tests and procedures were sent to families in English. Caregivers could not comprehend letters and paperwork about benefits including Social Security, Medicaid forms or expiration letters, application for camps, and Medicaid waiver program applications.
Mother receives letter in English from Social Security, tries calling to get an interpreter, but cannot do so successfully [Encounter log for C01]
Theme 2: Multiple factors at caregiver-, provider-, and system-levels, in addition to language barrier, contributed to communication challenges.
Practical factors contributed to communication challenges. Many caregivers used go-phones or pay-by-the-minute numbers; therefore, their phone numbers changed frequently. Oftentimes, a single phone was shared between multiple family members. In some cases, the phone number listed in the Electronic Medical Record (EMR) was not accurate. This resulted in healthcare providers and agency representatives not being able to contact caregivers reliably. In addition, some phones did not have voicemail option available. Sometimes families did not return voice messages left on their phones.
Patient’s father works at a distance from family, has the only cell phone, makes the family difficult to contact [Encounter log for C03]
Equipment companies have a difficult time getting in touch with mom because of lack of reliable phone number [Coordinator quote about C11]
Other caregiver-level factors that affected communication were caregivers’ poor health literacy, lack of trust of healthcare providers, and inability to navigate the healthcare system. Families with poor health literacy were confused by instructions and did not follow them as a result. This resulted in children not receiving medications according to instructions on the prescription.
Mother often misses appointments because she is not literate, cannot read the reminders [Encounter log for C20]
Family is very shy, and won't ask questions of doctors directly; they ask questions only through the coordinator [Coordinator quote C24]
Some caregivers did not understand the prescription refill system; they thought that they had to have another prescription instead of going directly to the pharmacy for refills. As a result, refills were delayed or missed. For controlled substances when identification was required by pharmacy, caregivers felt as though they were being discriminated against and did not understand that the system required identification for obtaining a controlled substance. Caregivers did not understand healthcare rules and regulations such as prior-authorization requirement for medications or procedures.
Mother thought she was being discriminated against because she was made to show passport to get medication [Coordinator quote about C17]
Several provider-level factors that contributed to communication problems were also identified. Pharmacies did not use interpreters either for their phone calls or when labeling their medications after purchase. When families attempted to call the pharmacies for refills they were unable to communicate and therefore the refills were delayed. Surgeries and procedures were not explained resulting in misunderstanding about or delay in procedures.
Mom calling because she never received a call about test results [Encounter log for C61]
Pharmacy gives 30-day supply instead of 90-day supply, pharmacy's mistake; once new prescription written mother was not notified [Encounter log for C02]
Theme 3: Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual care coordinators.
The consequences of communication issues varied but affected both CMC and their caregivers. A common problem identified was missed appointments. When appointment reminders were sent or voice messages left in English, children missed these appointments. When there were appointment conflicts, caregivers were unable to call providers’ offices to reschedule these appointments.
Patient missed appointment because they never received a call from [specialty] clinic [Encounter log for C01]
Mom missed appointment because she did not know the time [Encounter log C04]
Medication issues were another common consequence of miscommunication or misunderstanding. CMC experienced delayed or missed refills because of caregivers’ lack of understanding of the system or inability of the caregiver to communicate with the pharmacy. Incorrect administration of medication, and failure to administer medication were also seen.
Patient has gone for months without supplies because mother didn’t know who to call [Coordinator description about C17]
Patient took medication incorrectly because family spoke with a non-Spanish speaking nurse, causing a misunderstanding about how it is taken and when [Coordinator description about C19]
Communication challenges resulted in missed or delayed services for some children. Children did not receive health and support services they were qualified for, such as Early Intervention Services or special camps for CMC. One child had a surgical procedure delayed for months due to a miscommunication between the surgical team and the caregiver. Due to misconceptions about helpfulness of the procedure, one family missed multiple appointments delaying a diagnosis of seizure and appropriate seizure control for their daughter. Caregivers’ inability to complete paperwork needed to obtain services resulted in missed or delayed services for children.
Mom was not responding to letters written in English asking her for supplies she needed, and consequently she stopped receiving supplies [Encounter log for C06]
Caregivers were unable to advocate for services for their children secondary to the language barrier. Caregivers experienced stress as a result of communication challenges surrounding the care of their children. Communication problems contributed to lack of caregiver trust of providers that resulted in less adherence to medical instructions.
Mom concerned about patient, but cannot contact PCP because of language barrier, since she cannot negotiate Spanish line [Encounter log for C29]
Family was buying formula that should have been paid for because they could not negotiate the process. [Encounter log for C38]
Bilingual care coordinators identified caregivers’ communication challenges and served as intermediaries in communication between caregivers and healthcare providers. They also helped caregivers navigate the healthcare system. Involvement of care coordinators mitigated the consequences of communication problems for families.
Care coordinator assisted mom in reading 2 letters, one from Social Security and the other from Medicaid transportation [Encounter Log for C26]
Mother calls to verify time and place of appointment [Encounter log for C13]