Table 4 Codebook definitions
Code | Definition |
|---|---|
Clinician behaviors and characteristics | Descriptions of individual clinician (primary care and subspecialty) behaviors. Includes references how clinicians' knowledge, responsiveness, demeanor, collaboration, helpfulness, responsiveness, interest, and investment influence access to care, quality of care, and credibility |
Parent behaviors and characteristics | Descriptions of parents as the driving force that leads to care. Includes references to persistence in learning/researching the condition, networking with others, educating clinicians, and advocating for the child. Also includes discussions of parental skill, attitude, intuition, and knowledge |
Availability of specialist multidisciplinary teams | Descriptions of proximity to multidisciplinary specialist teams and availability of local care influence care. Includes references to travel distance, quantity/quality of local treatments and services, and rural health care |
Care coordination and logistics | Descriptions of multidisciplinary care as a long process and/or one that is logistically complex. May refer to the burden of scheduling appointments, coordinating travel, requesting medical records, completing paperwork, and/or the lack of limited institutional support |
Insurance and financial issues | Descriptions of financial strain related to travel, insurance, and treatments and services. Also, includes descriptions of financial privilege and the role of high-quality insurance in accessing and maintaining care |
Treatments and services | Descriptions of availability of treatments and services. Include references to limited, ineffective, or harmful treatments, harsh side effects or morbidities, and uncertain outcomes. May include difficulty accessing supportive services or obtaining necessary equipment |
Accuracy and timing of diagnosis | Descriptions of how receiving an early and accurate diagnosis affect care. May refer to diagnosis opening doors to research and support resources. Also includes references to the ways misdiagnosis or delayed diagnosis can lead to delayed care, inappropriate treatments, and emotional distress |
Characteristics of clinical presentation | Descriptions of how the characteristics of the child’s disease can influence access to care. Includes references to severe symptoms or visible manifestations of the anomaly triggering earlier and more intensive diagnostic workups and late-onset or milder symptoms delaying care |
Social support networks | Descriptions of the role of advice and recommendations from social support networks, including social media or other direct communication with families affected by similar diseases. Refers to the role social support plays in accessing care, often by identifying experts and treatments that are not widely publicized. Includes references to feeling reassured and supported |
Scientific progress | Descriptions of how limitations of science and medical knowledge influence care. Include references to the lack of information in the medical community about newly discovered diseases. May also include descriptions of lack of dedication among researchers and pharmaceutical companies in expanding scientific knowledge |
Luck or happenstance | Descriptions of the role of luck or chance in accessing care, often related to chance encounters with individuals who facilitated eventual diagnosis or access to experts. Includes chance encounters and privilege related to education, occupation, or geographical location |