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TABLE 2

Summarized Results From Research Topic Development

Description of Research Topics Within Each ThemeRepresentative Respondent Perceptions
Caregiving at home and caregiving experience  
 Home environment as a health determinant; interventions to support caregiving at home; best practices for caregiver education and peer-to-peer support “Medical professionals need to be aware of the home environment, what interventions are realistic in a day-to-day environment, that will let the child live as much like a typically developing child as possible…” 
Technology and care  
 Technologies to complement caregiving and communication; dissemination or implementation of technology “Real-time symptom monitoring allowing just-in-time adjustments (like asthma meds in response to peak flows)…” 
Access to services and supports (health system and community)  
 Workforce capacity and expertise; CYSHCN, health care, and community links; durable equipment, education, and dental care “Having more access to behavioral services helps to keep children in the community rather than having to utilize inpatient [care].” 
Financing, payment models, and insurance  
 Payment model influence on quality, access, and outcomes; compensation for families, providers, and community services “…Funding can be used for what the family determines is most needed, even if it is for social determinants of health, housing, food, transportation, childcare…” 
Medical home and comprehensive care models  
 Key ingredients of effective models; family partnership, team efficiency, provider retention, and culturally sensitive care “In model practices, who provides care coordination, what do they do (especially what do they do that [is] successful), what are key qualities and qualifications for this position?” 
Care planning and coordination  
 Shared decision-making and goal setting; generalizable CYSHCN health screening and comanagement approaches “Improved family engagement through mutually defined goals (shared decision-making) that are family centered…” 
CYSHCN health, vulnerability, and complexity  
 Interventions to reduce consequences of social determinants, rural environments, mental health, and extreme complexity; health outcomes meaningful to families “…Need research in the area of CYSHCN living in rural locations; how to provide services and supports, what is available now, etc.” 
Family health  
 Interventions to promote family physical and mental health, resilience, and self-care; health system influence on family caregiver health “What are the caregiver benefits when they receive appropriate care support versus parents who do not receive same level of support—ability to work outside the home, caregiver stressors, and health and well-being?” 
Research methods innovations  
 Rare disease cohorts; CYSHCN as research team members; marketing findings to research consumers “…Increased participation in research by youth/young adults with chronic health conditions. What is important to them, what barriers do they experience, what are their suggestions to improve the system?” 
Description of Research Topics Within Each ThemeRepresentative Respondent Perceptions
Caregiving at home and caregiving experience  
 Home environment as a health determinant; interventions to support caregiving at home; best practices for caregiver education and peer-to-peer support “Medical professionals need to be aware of the home environment, what interventions are realistic in a day-to-day environment, that will let the child live as much like a typically developing child as possible…” 
Technology and care  
 Technologies to complement caregiving and communication; dissemination or implementation of technology “Real-time symptom monitoring allowing just-in-time adjustments (like asthma meds in response to peak flows)…” 
Access to services and supports (health system and community)  
 Workforce capacity and expertise; CYSHCN, health care, and community links; durable equipment, education, and dental care “Having more access to behavioral services helps to keep children in the community rather than having to utilize inpatient [care].” 
Financing, payment models, and insurance  
 Payment model influence on quality, access, and outcomes; compensation for families, providers, and community services “…Funding can be used for what the family determines is most needed, even if it is for social determinants of health, housing, food, transportation, childcare…” 
Medical home and comprehensive care models  
 Key ingredients of effective models; family partnership, team efficiency, provider retention, and culturally sensitive care “In model practices, who provides care coordination, what do they do (especially what do they do that [is] successful), what are key qualities and qualifications for this position?” 
Care planning and coordination  
 Shared decision-making and goal setting; generalizable CYSHCN health screening and comanagement approaches “Improved family engagement through mutually defined goals (shared decision-making) that are family centered…” 
CYSHCN health, vulnerability, and complexity  
 Interventions to reduce consequences of social determinants, rural environments, mental health, and extreme complexity; health outcomes meaningful to families “…Need research in the area of CYSHCN living in rural locations; how to provide services and supports, what is available now, etc.” 
Family health  
 Interventions to promote family physical and mental health, resilience, and self-care; health system influence on family caregiver health “What are the caregiver benefits when they receive appropriate care support versus parents who do not receive same level of support—ability to work outside the home, caregiver stressors, and health and well-being?” 
Research methods innovations  
 Rare disease cohorts; CYSHCN as research team members; marketing findings to research consumers “…Increased participation in research by youth/young adults with chronic health conditions. What is important to them, what barriers do they experience, what are their suggestions to improve the system?” 
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