Savithri Nageswaran

Caring for children with medical complexity poses significant challenges for parents/caregivers. Outpatient clinical visits are crucial for these children. This qualitative study (2/2022-4/2022) conducted in North Carolina involved semi-structured interviews with 23 caregivers of children with medical complexity (15 English; 8 Spanish) about their in-person visit experiences for their children. The purposive sample included children of Black race, rural residence, age >10 years, telehealth nonusers, and those with ≥10 clinic appointments/year, and Spanish-speaking caregivers. Data were transcribed and analyzed using thematic analysis. Four themes emerged: (1) logistical challenges of in-person visits for caregivers exist; (2) in-person visits negatively affect families and cause caregiver stress; (3) caregivers use personal strategies to optimize in-person visits; and (4) individualized and flexible outpatient care is needed. Health care providers and health systems should consider the unique needs of children with medical complexity and their families, offering choices to minimize challenges caused by in-person visits.

Children with medical complexity (CMC) receive care from many clinicians. Our objective is to describe caregivers’ experiences about telehealth for CMC. This qualitative study conducted in North Carolina involves semistructured interviews with 23 caregivers of CMC (15 English; 8 Spanish). Data were analyzed using thematic content analysis. Five themes were identified: (1) telehealth allayed caregivers’ fears about their children’s exposure to COVID-19 and mitigated the challenges with in-person visits during the pandemic. (2) Telehealth reduced the logistical challenges of in-person visits for CMC, enabled providers to see children in their home environment, and prevented appointment cancelations. (3) System inaccessibility, technical problems, and providers’ inability to deliver telehealth were challenges. (4) Inadequate evaluation of the child and caregiver-provider communication were limitations. (5) Caregivers were satisfied with telehealth, found variability in telehealth offering, and wished telehealth continued to remain an option. Telehealth is a viable option for outpatient care delivery for CMC.

Background: Children of minority race/ethnicity face barriers to accessing specialty services. During the COVID pandemic, health insurance companies reimbursed telehealth services. Our objective was to evaluate the effect of audio versus video visits on children's access to outpatient neurology services, particularly for Black children. Methods: Using Electronic Health Record data, we collected information about children who had outpatient neurology appointments in a tertiary care children's hospital in North Carolina from March 10, 2020, to March 9, 2021. We used multivariable models to compare appointment outcomes (canceled vs completed, and missed vs completed) by visit type. We then conducted similar evaluation for the subgroup of Black children. Results: A total of 1250 children accounted for 3829 scheduled appointments. Audio users were more likely to be Black and Hispanic, and to have public health insurance than video users. Adjusted odds ratio (aOR) for appointments completed versus canceled was 10 for audio and 6 for video, compared to in-person appointments. Audio visits were twice as likely as in-person visits to be completed versus missed; video visits were not different. For the subgroup of Black children, aOR for appointments completed versus canceled for audio was 9 and video was 5, compared to in-person appointments. For Black children, audio visits were 3 times as likely as in-person visits to be completed versus missed; video visits were not different. Conclusions: Audio visits improved access to pediatric neurology services, especially for Black children. Reversal of policies to reimburse audio visits could deepen the socioeconomic divide for children's access to neurology services.

Objective: Caregivers of children with medical complexity (CMC) face decisions about life‐sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision‐making about tracheostomy placement that might apply to other LST in CMC.Design: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary‐care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision‐making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision‐making framework and process.Results: Many factors influenced caregivers' decisions, including children's well‐being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision‐making has inter‐related caregiver‐ and HCP‐level factors that influence the process. The framework contains elements not captured in a shared decision‐making model, but better fits a collaborative decision‐making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision‐making conversations.Conclusions: CDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision‐making about other LSTs needs further exploration.

Objectives: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.Methods: This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.Results: Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.Significance of results: Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

Background Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Hispanic children face many challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents with limited English proficiency (SSP-LEP). Methods This was a qualitative study of 70 children of Spanish-speaking caregivers, enrolled in a complex care program of a tertiary care children’s hospital in North Carolina. Secondary source data were abstracted logs of care coordination tasks maintained by the program’s two bilingual care coordinators for a median observation period of 45 months, and complemented by data from care coordinator interviews. Data were entered and coded in ATLAS.ti. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers. Results Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified as follows: (1) caregivers faced many communication challenges primarily because of language barrier. (2) Multiple factors at caregiver, provider, and system levels, in addition to language barrier, contributed to communication challenges. (3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual coordinators. Conclusion SSP-LEP face unique communication challenges resulting in negative impact on the healthcare of their CMC. Bilingual coordinators can help improve communication between SSP-LEP and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.

Background: Children with medical complexity (CMC) are at increased risk of fragmented care. Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Latino CMC face greater challenges in access to healthcare services. Hispanic children face greater challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents/caregivers of CMC. Methods: This was a retrospective cohort study of 70 CMC enrolled in a complex care program of a tertiary care children’s hospital in western North Carolina. We reviewed the care coordination tasks from encounter logs maintained by the program’s two bilingual care coordinators for a median observation period of 45 months. Data were then validated by the care coordinators. Data containing care coordination tasks were entered into ATLAS.ti and coded. Qualitative data analysis was performed. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers. Results: Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified: 1) Spanish-speaking caregivers faced many communication challenges primarily because of language barrier. 2) Multiple factors at caregiver-, provider-, and system-levels, in addition to language barrier, contributed to communication challenges. 3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual care coordinators.Conclusion: Spanish-speaking caregivers of CMC face unique communication challenges resulting in negative impact on the healthcare of these children. Bilingual care coordinators can help improve communication between Spanish-speaking caregivers of CMC and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.

OBJECTIVES: There is limited research about best practices for transitioning children with medical complexity (CMC) from hospital to home. Our objectives were to describe issues related to transitioning CMC from hospital to home health care and identify strategies to improve this transition. METHODS: This qualitative study was conducted in western North Carolina between 2012 and 2014 and involved a focus group of 14 hospital- and community-based stakeholders and 4 focus groups of 18 home health nurses. Focus groups were audio-recorded and transcribed verbatim, and transcriptions were managed in ATLAS.ti software. By using content analysis, recurrent themes related to transitioning CMC from hospital to home were identified. RESULTS: Themes in 4 domains emerged. (1) Home health orders: home health care providers desired hospital-based providers to write accurate and specific orders, notify them in advance about discharge to order specialized supplies, and avoid changing orders at the last minute. (2) Communication: participants found discharge summaries useful but did not always receive them. Communication between hospital-based clinicians, home health care providers, and the child’s primary care physician about the hospitalization and home care was important. (3) Resources: home health care providers needed hospital-based clinicians to be a resource during the early period of transition home. (4) Caregiver preparation: participants emphasized caregiver preparation about medical care of CMC, home health nursing, and the differences between hospital and home care practices in the care of CMC. CONCLUSIONS: There are gaps in the system of transitional care of CMC. Potential strategies to improve transitional care of CMC between the hospital and home health care services exist.