Treatment Collaboration When the Stakes Are High: Ethnographically Studying Family-Centered Care in an Outpatient Pediatric Specialty Clinic.

Family-centered care (FCC) is vital for children with special health-care needs and serious chronic illnesses. Family-clinician collaboration and partnership formation are key FCC elements associated with improved health outcomes. However, FCC implementation barriers persist. Although some ethnographic research examines how FCC principles align with practice in inpatient settings, more studies are needed in outpatient specialty clinics. Using an FCC-oriented research team (clinicians, social science researchers, and families) blended multidisciplinary clinical knowledge and family/patient expertise with chronic illness. Our ethnographic study in a high-risk asthma outpatient clinic examined how FCC principles align with clinical practice, identified factors affecting partnership, and compared our findings to a large ethnographic study in an inpatient setting. Qualitative data from direct observation of 14 families with lengthy clinic visits were analyzed. Codes were applied to themes using FCC principles. Clinic visits had interactional and contextual elements that both aligned and misaligned with key FCC principles: information sharing, respect, participation, and collaboration. Recommendations for advancing FCC are outlined, and the importance of this step in light of ongoing health disparities is addressed.

The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence.

BACKGROUND: Children with systemic juvenile idiopathic arthritis (SJIA) often encounter a delay between symptom onset and disease diagnosis, partly due to the broad differential of fever and lack of symptom recognition by providers. Families often seek multiple medical opinions and post on social media about their frustrations. This linguistic analysis observed the changing language patterns and social media posting behaviors of parents in the time leading to, during, and after SJIA diagnosis. METHODS: Public social media sites were manually reviewed by a linguistic team to evaluate posts about SJIA from US-based parents. RESULTS: A total of 3,979 posts between July 2001 and January 2015 were reviewed from 108 sites. Pre-SJIA diagnosis parents sought answers and shared status updates on social media, focusing primarily on the following three site types: alternative/natural lifestyle forums (39%), Facebook (27%), and disease-specific forums (17%). Posts during early prediagnosis phases were characterized by expressive language showing confidence in health care providers and trust in parental instincts. At later prediagnosis stages, parents continued to use social media, but the posts demonstrated increased frustration with delays in diagnosis and gaps in communication with providers. More objective symptom descriptions and a greatly reduced child-centered emotional focus were observed as parents shifted into caregiving roles. Once the diagnosis of SJIA was confirmed, parents used straightforward, less expressive language, and Facebook (47%) to make "announcement" posts and increased their use of SJIA websites (30%). With treatment initiation, the posts demonstrated a slow return of expressive language and an increased parental understanding of the "new normal". CONCLUSION: Parents use different language styles, frames of reference, and websites before and after SJIA diagnosis. Gaps in parent-provider communication, especially before diagnosis, and their new roles as caregivers lead to parental use of social media to express frustration with the health care process. Providers should tailor their discussions with parents to address these issues.

Teaching About Better Family-Clinician Partnerships in High-Risk Pediatric Asthma Care.

Family-clinician partnership including communication, trust, respect, and power leveling is essential in pediatrics. Our case study illustrates elements supporting/hindering partnership in a high-risk urban pediatric asthma clinic. Data from observation of a 100-minute visit were qualitatively analyzed by applying codes to themes, using family-centered principles. Three key categories emerged from examining interactions and their sequencing: (1) partnership supported, (2) partnership missed, and (3) partnership hindered. Practitioners must become more sensitive to families' lives and skilled in family-centered care delivery. Clinician education about partnership can help with negotiating workable treatment strategies for complex conditions such as asthma and reduce health disparities.