The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions

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Munn, Jake W. Griffin, Mary Ciccarelli, Melissa M. Pangelinan This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5925786/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract Background: The Indiana Complex Care Coordination Collaborative (IC4) is a statewide model of care coordination aimed at improving the quality of medical care for children with medical complexity (CMC) by training and embedding nurse care coordinators in primary care practices. This study examines the impact of IC4 care coordinators on caregivers’ and patients’ quality of medical care, access to medical and community resources, care workload, and the quality of life of caregivers and CMC. Methods: Caregivers of CMC ( n = 13) completed one-hour semi-structured interviews focused on met/unmet needs, quality of medical care, co-developed shared plan of care, caregiver/patient quality of life, caregiver workload, and medical home experience. Using NVIVO, researchers used a codebook to conduct an inductive thematic analysis of the interview transcripts. Results: The thematic analysis was revealed five overarching themes: (1) central role of the care coordinator, (2) proactive and personalized support, (3) care across the lifespan, (4) emotional support, and (5) navigating healthcare systems. Caregivers reported that they considered their care coordinator a trusted health professional who can advocate for them with other health professionals. Families appreciated that the shared plan of care created with the care coordinator can be easily disseminated to other healthcare and service professionals, as well as other family members, and helps them be seen as individuals, not just as a medical record. Conclusion: Care coordination can address unmet needs and greatly improve the quality of and access to care received by CMCs and their families. Unanimously, caregivers report the substantial instrumental, informational, and emotional support care coordinators (CCs) provide to access medical systems, resources, planning, and reducepatient care workload. Additionally, several caregivers reported substantial social support from the CC. However, several caregivers still reported feelings of loneliness and difficulties engaging with families without CMC. Family-centered care health care quality care workload Introduction The term children with medical complexity (CMC) commonly includes those with complex, chronic medical conditions affecting multiple organ systems and requiring regular monitoring by medical professionals and caregivers ( 1 , 2 ). Approximately 3.7 million of the 73 million US children (~ 5%) in 2014 were CMC ( 3 , 4 ). Although CMC represents a small percentage of pediatric patients, they represent 30% of overall pediatric healthcare spending and about 34% of Medicaid spending ( 2 ). The financial stability of the families of CMC is often hampered due to the cost of care, loss of employment, and lack of insurance coverage ( 5 , 6 ). Thus, reducing healthcare spending while maintaining the quality of care for CMC is an important priority for insurance providers, clinicians, and caregivers. In this study, we define “medical care coordination” as the coordination of appointments, specialists, and resources done by medical professionals in conjunction with the patient. This definition aligns with the concept of “family-centered care interventions” which aim to engage patients and their families in shared decision-making and health care goal setting, thereby improving access to care, communication and information sharing, continuity of care, and providing informational and emotional support to families ( 7 , 8 ). Medical -centered care coordination ( 7 ), has been successfully delivered with CMC ( 8 , 9 ), is one solution to reduce healthcare spending ( 8 , 10 ) and ensure quality of care ( 9 , 10 ). Outside the US healthcare system (e.g., Canada, Australia, various European countries), care coordination has been incorporated into primary care ( 11 , 12 , 13 ) specialty care ( 14 , 15 ), and acute care settings ( 16 ). Indeed, several systematic reviews ( 7 , 16 , 17 ) have detailed the positive impact of these often nurse-led programs on access to clinical team members, comprehensive and patient-centered care planning, and appointment management. In addition to the potential to reduce care utilization and costs, these programs resulted in consistent improvements in various aspects of caregiver health (stress, quality of life, self-efficacy) and satisfaction with care. The added complexity of the US health care system in which private insurance and unique waiver services by state leads to further fragmented and inequitable care for the most vulnerable patients. Beyond the financial benefits, care coordination provides patient and family-centered care to organize the whole care team (primary care physician, specialists, and allied health providers) to ensure the patient receives high-quality, consistent, and holistic care ( 10 , 18 ). Nurse care coordinators or navigators have been embedded in primary care to reduce the burden of navigating insurance, Medicaid waivers, and providers within and across health systems for diverse patients across the lifespan, including dementia ( 19 ), mental health ( 20 ), and cancer ( 21 ). Care coordination can improve communication with all medical team members( 22 , 23 ), reduce hospital stays ( 9 , 24 , 25 ), improve medical system navigation( 22 ), and increase the caregiver’s ability to cope with the demands of care workload ( 22 ). Yet, there was a consistent reduction in pediatric care coordination from 2016 to 2022 ( 26 ). Caregiving for a CMC changes every aspect of a caregiver’s life ( 6 ). Caregivers report their identity ( 6 ), physical health ( 6 ), mental health ( 6 , 27 , 28 ), marriage/romantic relationship ( 6 , 28 ), caring for other children ( 6 , 28 ), employment ( 6 , 28 ), financial stability ( 6 , 27 , 28 ), personal time ( 6 ), and social life ( 6 ) are all negatively affected by their role as caregivers. Without access to care coordination, caregivers of CMC spend considerable time navigating insurance and medical care across clinical teams (primary care and specialists), pharmacies, medical equipment suppliers, and other service providers ( 28 , 29 ), contributing to extremely high caregiver burnout ( 30 ). Caregivers need instrumental, informational, and emotional support from their systems of care to prevent burnout ( 31 ). Family-centered care coordination comprehensively addresses the care needs of CMC ( 32 ). This includes collaboration between the primary medical home, the family, specialists, social workers, and more. The utilization of shared plans of care (SPOC) that are co-created between the families and medical team can help empower families in their care (ADD McAllister) ( 33 ). Family -focused care honors the resilience and love that caregivers pour into their CMC ( 34 ). This care can build upon the existing support system of the CMC to give them the highest quality of care focused on their goals. Understanding the impact of this style of care coordination on caregivers is vital to help stakeholders understand and address the unmet need for care coordination for children with CMC. The Indiana Complex Care Coordination Collaborative (IC4) was developed as part of a 10-state collaborative project for CMC ( 35 ). At the time of this study, IC4 was funded by the Indiana Family and Social Services Administration through the Home and Community Based Services (HCBS) Stabilization Grant. The IC4 care coordination model includes training and coaching for nurse care coordinators as they are embedded into primary care practices across Indiana. At the time of this study, 14 care coordinators were trained and embedded in primary care practices across seven medical systems. Anonymous family satisfaction surveys consistent with the methods for the 10-state collaborative project ( https://ciswh.org/project/coiin-cmc ) were sent to enrolled families at 6-month intervals as part of IC4’s quality improvement. Measures include composite ratings of care coordination services, the SPOC use, and quality of care in the medical home. Over time, there was an increase in ratings of care coordination and SPOC, with subtle changes in the quality of care at the medical home. Although these results are promising, it is difficult to determine the extent to which family satisfaction is due uniquely to the role of the care coordinators or other aspects of the IC4 program (e.g., opportunities for parent social support, physician training, collaborative, etc.). The present study provides new insights regarding families’ perceived impact of care coordination as part of their participation in the IC4 program. Methods This study employed a qualitative descriptive methodology to explore caregivers’ experiences with the IC4 care coordination program through semi-structured interviews. Human Ethics and Consent The study consisted of 1-hour semi-structured interviews to examine the effectiveness of the IC4 program. According to the Declaration of Helsinki, the Indiana University Institutional Review Board has approved all procedures. Families were recruited via emailed information letters to the primary caregiver. Caregivers were provided with an explanation of the study. Informed consent was obtained from the caregiver prior to the commencement of the recorded interview. Indiana Complex Care Coordination Collaborative For the first six months of employment, care coordinators complete 75 hours of training (3 hours per week, for 24 weeks). After the first 6 months, they continue to train 4 hours per month to continually refresh their content knowledge and stay up-to-date with new information. These trainings were conducted in both group and individual coaching formats. All training is conducted as virtual live discussions. One and a half hours a week was spent in group training with coaches and other care coordinators. The 1.5 hours were one-on-one with a coach. The curriculum was developed based on content recommendations from the Camden Coalition, Lucile Packard Foundation, and Ambulatory Nursing Association. The primary care team identifies eligible patients based on a consensus definition: Children with medical complexity were defined as children with three organ systems involved, necessitating longitudinal care from at least three specialists. The care coordinators invited the caregiver and, upon caregiver acceptance, conducted a comprehensive assessment with medical record review and family interview to create a shared plan of care (SPOC) that summarizes the current state of the child and family, the medical history, and plan, including all current service providers and the caregiver and patient’s goals. The care coordinators disseminated the SPOC across the care neighborhood, including clinical teams and community services, as requested by the family. The families had access to the SPOC and kept hard copies of it for use with others caring for their CMC. The program used quality indicators to measure outcomes, including a first-month outcome delivered to each family (e.g., scheduling a needed appointment, obtaining specific equipment or supplies, etc.). The care coordinators contacted the caregiver at least quarterly and conducted semi-annual reassessments to maintain current SPOCs. Families have access to their care coordinators as their key point of contact for needs and questions through direct phone lines and electronic messaging throughout the program. Recruitment and Informed Consent Participants were recruited via an email flyer from the cohort of families participating in the IC4 program. A total of 15 caregivers contacted the research team to express interest in the study and completed the demographic survey. 13 participants were scheduled for and completed an interview; the remaining 2 were unable to schedule their interview. Emails with scheduling links and a short demographic survey, including informed consent, were sent to the families. Caregivers also gave verbal consent to be recorded and to participate in the study at the beginning of the interview. Caregivers were included if they had been working with a care coordinator through the IC4 program, were comfortable being recorded, and could complete the 1-hour interview. Data Collection Caregivers completed a 25-items survey including information on their age, race, ethnicity, sex, socioeconomic level, and household size. They also asked about their child’s age, race, ethnicity, condition, and primary care office. Additionally, they were asked about how long they had been in the IC4 care coordination program. The semi-structured interview and survey were created for this study to better understand the caregivers’ experiences with the care coordination program. The interview questions were based on the family satisfaction survey delivered as part of program quality improvement. The questions included six overarching themes: caregiver and patient met/unmet needs, quality of medical care, the co-developed shared care plan, caregiver and patient quality of life, caregiver workload, and medical home experience. There were 18 questions posed to the caregivers, with additional follow-up questions based on their responses (i.e., to ask for clarification or further details). These questions are available as supplementary material. Semi-structured interviews were conducted individually via one-hour video conference (Zoom™) with one researcher (MP). The interview was recorded and automatically transcribed through Zoom’s built-in software. Participants selected a pseudonym to ensure confidentiality and were referred to with these pseudonyms throughout the interview. A research assistant reviewed the transcripts and edited transcription errors. Data saturation was achieved when no new keywords or codes emerged at the individual level and no new themes emerged at the group level (Kerr, Nixon, & Wild, 2010). A priori, we estimated a minimum of 12 interviews. Analysis The research team conducted an inductive thematic analysis consistent with Braun and Clarke (2008). The phases of this process were: ( 1 ) familiarizing yourself with your data, ( 2 ) generating initial codes, ( 3 ) searching for themes, ( 4 ) reviewing themes, ( 5 ) defining and naming themes, and ( 6 ) producing the report. Three research team members (EM, JG, and MP) completed Phase 1. MP conducted the interviews and took notes during the interviews, JG reviewed and edited the transcripts, and EM prepped and uploaded all transcripts into the NVivo 14 (Version 14.24.2) software. JG and EM reviewed all transcripts. Phase 2 was completed by two researchers (JG and EM), who generated 74 unique codes. They then independently reviewed all transcripts in NVivo based on the codebook. For each question, the analytic process was: ( 1 ) read the transcript, ( 2 ) chunk the response into smaller sections, and ( 3 ) code each of the smaller sections with up to 2 codes. The codebook is available upon request. Three researchers (EM, JG, MP) completed Phase 3 by inductively formulating broad themes based on the initial coding. The themes were first formulated independently and then discussed collaboratively. The senior researcher (MP) settled disagreements. At this stage, 11 themes were identified. Phase 4 was conducted by three researchers (EM, JG, and MP). All inductive codes were then categorized into themes. Direct quotes and coded sections were checked for each inductive theme. Two additional themes were identified based on the initial coding that did not fit into one of the original 11 themes, resulting in a total of 13 inductive themes. Three researchers (EM, JG, and MP) conducted Phase 5. EM wrote the name and description of each theme, and JG and MP reviewed and provided feedback or edits. Direct quotes that captured the theme were identified. Phase 6 was conducted by three researchers (EM, JG, and MP). The final write-up and report are provided in the results section. Results Thirteen caregivers completed 1-hour interviews. At the individual level, all participants repeated key words and broad themes within their interviews. At the group level, no new themes emerged after 10 participants were coded. The sample included participants from six pediatric clinics in the IC4 program. The sample characteristics are provided in in Table 1 . Table 1 Summary characteristics. Demographic Information N = 13 Caregiver Age Mean (STD) 38.54 (11.13) Years Range 27.2–66.08 Years Missing 1 Caregiver gender n (%) Female 13 (100%) Male 0 Parent race n (%) White 10 (77%) Black 3 (23%) Ethnicity n (%) Hispanic 1 (8%) Non-Hispanic 12 (92%) Estimated Household Income Under $ 15,000 2 (15%) $ 25,000–34,999 1 (8%) $ 35,000–49,000 2 (15%) $ 50,000–74,999 1 (8%) $ 75,000–99,999 2 (15%) $ 100,000-149,999 3 (21%) No information 2 (15%) CMC - Age Mean (STD) 9.46 (7.08) Years Range 1.7–21 Years CMC - Race White 9(69%) Black 4 (31%) CMC - Ethnicity Hispanic 1 (8%) Non-Hispanic 12 (92%) CMC- Sex Female 4 (31%) Male 9 (69%) CMC- Conditions Chronic condition requiring daily medicine 9 Physical disability 12 Intellectual disability 7 Mental health condition 1 Additional disabilities 2 Time in care coordination program 0–3 months 2 4–12 months 1 1 year 1 2 or more years 9 *****Insert Table 1 *** Five themes were identified: ( 1 ) central role of the care coordinator, ( 2 ) proactive and personalized support, ( 3 ) care across the lifespan, ( 4 ) emotional support, and ( 5 ) navigating healthcare systems. Table 2 displays the themes, concepts and quotes. Table 2 Themes Theme Concept Quote Central Role of Care Coordinator (All participants) Families report easy access to their care coordinator as a single point of contact to reduce barriers to medical care and resource (13/13) “…knowing that she is the fast, 1st line of defense, like if something odd is going on, that we can just run it by her instead of messaging like the whole care team… having just that in my back pocket is invaluable.” (Caregiver of a 7-year-old with spina bifida) Families report that their care coordinator is a trusted health professional who can advocate for them with other health professionals (9/13) “We can advocate as parents. But having that other person that has that knowledge and stuff, can use the right words and be able to get what we need across, advocate for us on behalf of our children, and help us advocate to get the needs met, that’s invaluable.” (Caregiver of a 6-year-old with spina bifida) Families report that their care coordinator provides informational and instrumental support in understanding and navigating health insurance benefits and eligibility (9/13) “... she had found out that we were paying for thickener for her dysphagia out of pocket, and she was like, why are you doing that? She has Medicaid.” (Caregiver of a 2-year-old) Proactive and Personalized Support (All participants) Families report that their care coordinator reduces the burden of care navigation by being proactive (12/13) “I don't just get a text [reminder]. I get the phone call as well... like most people just send you a text. And I'm like, okay, but if I'm doing something, I'll overlook that text.” (Caregiver of a 3-year-old with a rare genetic condition) Families report that the process of creating the SPOC with their care coordinator resulted in a plan that reflected their needs and goals (5/13) “And like I feel like she actually likes takes the time to listen to me. Instead of just telling me what we need. She listens to see what I'm telling her ...the way she presented it made me feel like this is, you know, my plan, and you know she's asking me like, what do you want? What do you see? … 'cause you know him the best.” (Caregiver of a 9-year-old with Duchenne Muscular Dystrophy) Families report that their care coordinator and SPOC allow them to be seen as people, not a number or medical record (4/13) “... she sees me as a person and not as my son's mother. A lot of his other doctors, I've kind of just faded away as a person... people will address me as ‘mom’ in the clinics, whereas she [the CC] will call me by my name.” (Caregiver of a 16 year old with intellectual disability) Families appreciate that the SPOC can be easily disseminated to other healthcare and service professionals and other family members (10/13) “Having a copy of that care plan in my vehicle is so reassuring for me, because if, god forbid, I get in a car accident. I'm able to tell a 1st responder, "hey all of his needs are right here in this paperwork. This is everything about him". Stuff like that is extremely important that people don't normally think about. Just having everything in one package where I don't feel like I'm forgetting anything is really nice.” (Caregiver of a 5 year old with spastic quadriplegia) Care across the lifespan (10/13) Families report that care coordination would best begin at birth or the time of diagnosis and continue through the transition to adulthood "Start this for parents of kiddos, who are just like a month old, like straight out of the NICU. That would be huge because the 1st year of life with Spina Bifida is so much crazier... You didn’t know what you didn’t have; it's like having someone on your team that gets the whole picture (of your child’s care) … We didn’t know what we were missing, [this is] a special program we wish we always had.” (Caregiver of a 7 year old with Spina Bifida) Emotional Support (All participants) Families report that their care coordinator is personable and kind while also being knowledgeable and efficient (11/13) “She's empathetic. Compassionate. She, you know, I really feel like she actually cares about (child’s name) and what he needs.” (Caregiver of a 9 year old with Duchenne Muscular Dystrophy) Some caregivers reported feelings of loneliness and a lack of access to emotional supports (4/13) “I didn't realize I hadn't talked to anybody [socially] in like 9 weeks.” (Caregiver of a 20 year old with an intellectual disability) Some caregivers and children reported difficulty engaging with others who do not understand their experiences as a family with complex medical needs. (3/13) “I almost feel like there's two different worlds. There's like the caregiving world and the non-caregiving world. And it's so hard for them to understand, and it's so hard for me not to talk about it.” (Caregiver of a 16 year old with an intellectual disabilty) Some caregivers reported family members or religious organizations provided instrumental and emotional support (9/13) “We're super involved in our church and multiple different ministries. They just tag along with us, too. Our church is very inclusive, and we trust so many of them... for us, I think that is a huge part of our social-emotional wellness.” (Caregiver of a 7 year old with Spina Bifida) Navigating the Healthcare System (11/13) Families report prior difficulties with communicating with and navigating healthcare system and finding resources (11/13) “And we would call sometimes nobody answered... there's nobody like answering the phone. So sometimes we'd have to like call all day to try to get hold of somebody.” (Renee, a caregiver of two medically complex children) *****Insert Table 2 *** Theme 1: Central role of the care coordinator “Yeah, I think the main thing is just knowing that she is such a fast 1st line of defense like, if something odd is going on that we can just run it by her instead of messaging like the whole care team. So, I think, having just that in my back pocket is invaluable.” -Caregiver of a 7 year-old with spina bifida “We recently moved. I misplaced a full bottle of [medicine], and we were panicked. I got on that pMD (electronic messaging system). Our [care coordinator] was just amazing. She very, very quickly figured out what we could do and how we could get a backup. It wasn't the same medicine, but we could get a backup prednisone instead. And it was awesome. It was really awesome. How quickly they were able to react. If that app had not existed, there would have been a lot more.” (Caregiver of a 9 year-old with Duchenne muscular dystrophy) The care coordinator is a single point of contact that reduces barriers to care. They are considered a trusted advocates and liaisons with other health care practitioners. The care coordinator is instrumental in supporting the caregiver’s socioemotional wellness and reducing the care workload. Rather than making multiple phone calls to the same or different practices, caregivers contacted their care coordinator for any problem. Caregivers reported faster response times, better access to their medical professionals, and a wealth of resources provided by the care coordinator. The care coordinator could access medical supplies or medications that were previously unavailable to the caregiver. The care coordinator provided support to understand and navigate health insurance benefits and eligibility. Families that did not know they were eligible for Medicaid waivers or other resources were supported in applying for and gaining access to these resources. Theme 2: Care coordinators provide proactive and personalized support I mean before they [the care coordinator] came along, I mean, I was always like a piece of paper flapping in the wind. Where do I go next? Where do I go next, you know? And it's just, oh, my gosh! Such a relief knowing that I can text her or email her, and she gets right back with me. -Caregiver of a 19-year-old with autism The care coordinator proactively reduced the burden of navigating healthcare and related systems. Caregivers expressed how their care coordinator helped reduce the burden of planning and scheduling across different providers. The care coordinator offered possible solutions to challenges and assisted with future planning. Caregivers expressed an intense sense of relief knowing that the care coordinator could provide scheduling assistance, resource identification, appointment reminders, and more. The care coordinator worked with the caregiver and patient to create the Shared Plan of Care (SPOC) document, which reflected family’s needs and goals, enabling the caregiver and patient to feel recognized as people rather than a medical record. Caregivers discussed how the SPOC included their goals and preferences in addition to documenting typical medical information (i.e., medical conditions, health care providers, medications, treatments, etc.) Caregivers appreciated that the SPOC can be easily disseminated to other healthcare and service professionals as well as family members or other informal care providers. One caregiver mentioned keeping extra copies with them in case of an emergency in which they were unable to explain their child’s needs to others. Others reported using the SPOC at Individualized Education Plan (IEP) meetings to explain their child’s medical needs and goals, and to assist in school-based planning. Theme 3: Care across the lifespan "Start this [the care coordination program] for parents of kiddos, who are just like a month old, like straight out of the NICU. That would be huge because the 1st year of life with Spina Bifida is so much crazier... You didn’t know what you didn’t have; it's like having someone on your team that gets the whole picture [of your child’s care]… We didn’t know what we were missing, [this is] a special program we wish we always had.” -Caregiver of a 7 year-old with spina bifida Caregivers emphasized the importance of starting care coordination early, at birth or at the time of diagnosis, and continuing through the transition to adulthood. Caregivers whose families received care coordination since the birth of their CMC discussed how important it was throughout their child’s journey. Others discussed wishing they had a care coordinator at birth or the time of diagnosis. The care coordinator was instrumental in reducing the stress of the caregivers of teenagers planning the transition from pediatric to adult primary care and those with concerns about medical guardianship. Theme 4: Emotional support “She's really easy to talk to and stuff like, you know like, if I'm having any issues like personally and stuff like, you know, if I just talked to her like sometimes just when we talk on the phone and stuff, it leads to just communicating like we're friends.” -Caregiver of a 6 year old with spina bifida Families appreciated that the care coordinators were personable, kind, and efficient. For many, the care coordinator acted as an emotional support system. However, some still feel very lonely and isolated. Some caregivers considered the care coordinator a friend. The care shown by the care coordinator provided a necessary safe space for the caregivers to express their overwhelm and isolation. Some caregivers reported that family members or religious organizations provided instrumental and emotional support. Caregivers reported the benefits of having a supportive partner in the primary caregiver’s life who provided instrumental and emotional support. Some discussed how siblings and cousins helped their CMCs connect socially. Others mentioned how personal acceptance and others’ acceptance of their CMCs helped improve their ability to integrate into the community. Finally, some discussed the importance of faith ministries welcoming them. However, some caregivers expressed loneliness in caregiving for a CMC. They discussed how they often feel like the only advocate and that they lack a social support system to help them care for their child. Although IC4 provides a parent support group (Parent Cafes) and the care coordinators recommended the Parent Cafes to all caregivers, only four caregivers mentioned attending. Two mentioned that they did not participate in the Parent Cafe because the online format was not conducive to socializing or that the Parent Cafes were not offered at a time that worked with their schedules. Some caregivers and children reported difficulty engaging with others who do not understand their experiences as a family with complex medical needs. Theme 5: Navigating healthcare systems “And we would call sometimes nobody answered... there's nobody like answering the phone. So sometimes we'd have to like call all day to try to get hold of somebody.” Caregiver of two medically complex children Without the care coordinator, caregivers reported difficulties communicating with healthcare providers and locating appropriate resources. Caregivers reported considerable obstacles to receiving quality medical care before participating in the care coordination program. They expressed the overwhelming stress of scheduling medical appointments and accessing primary and specialty care. They reported calling their primary care clinic, often several times, or leaving a message and waiting days to respond to simple questions. These caregivers also lamented that it would take months to speak with or schedule appointments with specialists. Caregivers mentioned that they were overwhelmed by the process and steps for obtaining medical and community support to care for their CMC. Discussion This study gained unique insights into caregivers' perceptions of the impact of care coordinators on their family’s access to quality medical care and community resources, care workload, and the quality of life for caregivers and caregivers of the chronically ill (CMC). The themes represent the perceptions of 13 caregivers in the IC4 program. Unanimously, caregivers reported that care coordinators provide substantial instrumental, informational, and emotional support in accessing medical systems and resources, planning appointments and setting goals, and reducing patient care workload. Previous research established the financial benefits of care coordination in decreasing the cost of medical care for CMC ( 9 ). However, funding for care coordination for CMC is not established federally (i.e., no billable code), resulting in a reduction of care coordination for CMC despite the significant benefit to payers and patients ( 26 ). Many families of those with CMC experience financial hardships and need supplementary insurance to cover medical costs ( 36 ). Policymakers and insurance groups should consider covering care coordination activities for CMC, which makes sense financially and is relevant to the quality of care. The caregivers in the present study discussed that before care coordination programs they faced many barriers to accessing medical care ( 28 , 29 ). Our caregivers reported being overwhelmed with trying to access both healthcare and community resources. Others have noted that parents/caregivers are overloaded as they “go between” their CMC and the medical team ( 37 ). In this study, several caregivers discussed the stress of their role as the only person advocating and planning for their child before enrolling in the care coordination program and receiving help from a care coordinator. Despite those who had support from family members, in-home nurses, or other caregivers, the primary caregivers still reported that they carry the brunt of the care navigation workload. This level of care workload leads to burnout ( 30 ), lost employment revenue, and negative caregiver health outcomes ( 6 , 28 ). Reducing the care workload is a key role of the care coordinator. Every caregiver described how the CC was their single point of contact or primary information resource. Previous literature has indicated that families of CMCs can fall through the cracks attempting to navigate care for their child( 38 , 39 ) resulting in discontinuity of care. Care coordinators can fill in the gaps ( 40 ). The ability to direct message the CC to answer a question or through the CCs gained access to other care team members was invaluable. In addition, the CC triaged health concerns, directed families to the right next source of care, and followed up after receiving care. Caregivers reported they received increased access to the resources and health information they needed and an advocate across the care team with other medical professionals. In addition to providing instrumental and informational support to navigate the medical system, care coordinators offered emotional and social support by listening to the needs of caregivers, giving them a safe space to express themselves, and treating them as a person. This is a unique finding that had not been previously reported in the literature. This is critically important as it may help improve the caregiver’s quality of life. Considering the reports of poor social lives and trouble relating to others observed here and by others ( 6 , 28 ), providing emotional and social support may be a critical service provided by the care coordinator that was not previously highlighted. Despite the support provided by the care coordinator, caregivers still reported persistent unmet social needs, which may require additional support, such as access to parent-to-parent organizations and support groups, as noted in the literature ( 6 , 28 ). Future research needs to identify and evaluate ways to meet the social needs of CMC caregivers. The caregivers in this study recognized the need for care coordination from the start of their journey, at birth or diagnosis, and into adulthood. In particular, the transition from pediatric care to adult practices is of high concern for CMC and caregivers as they navigate guardianship and decision-making with an adult child. This finding echos the findings of others (White et al., 2018). The care coordinator helped plan for the future by applying a proactive approach family center approach and incorporating transition plans into the written SPOC. Although SPOCs have been well established in the care coordination literature and are beneficial at many levels ( 33 , 41 ), ensuring that transition goals and needs are included should be standard practice. Limitations This study was conducted on a small group of female caregivers of CMC in one state participating in a care coordination program that may differ from other care coordination programs nationally. As such, these results may not be generalizable outside of the present program. However, the sample was diverse in the ages of the caregivers and the type of medical characteristics of the children. With this said, this qualitative study provides unique insights in the words of the caregivers to the impact of a medical care coordinator. Although care coordination programs may differ in terms of the types of services provided and staff members involved, and there may be unique characteristics of the care coordinators included in the present study, any instrumental, informational, and emotional support for caregivers of CMC helps to address important and often unmet needs. Conclusion Care coordination addressed unmet needs and organized and improved the care received by CMCs and their families. Caregivers appreciated the value of family-centered care with a highly trained and respected medical professional who can serve as an advocate and support to reduce patient care workload. Families appreciated the proactive approach to family-centered care. While care coordination does not address the complex and individualized needs of all CMC caregivers, it does lead to meaningful improvements in medical care satisfaction and improved patient care. Abbreviations CMC children with medical complexity IC4 The Indiana Complex Care Coordination Collaborative SPOC Shared Plan of Care Declarations Ethics approval and consent to participate: The study consisted of 1-hour semi-structured interviews to examine the effectiveness of the IC4 program. Per the Declaration of Helsinki, the Indiana University Institutional Review Board approved all procedures. Families were recruited via emailed information letters to the primary caregiver. Caregivers were provided with an explanation of the study. Informed consent was provided by the caregiver before the beginning of the recorded interview. Clinical trial number: not applicable. Consent for publication: All participants consent to being a part of the research study and for publication. All names listed in the documents are pseudonyms given to the participants to maintain their anonymity. All research participants consented to this method. Written informed consent for publication of their clinical details was obtained from the patient/parent/legal guardian/relative of the patient. Availability of data and materials: Data not available Competing Interests: The author(s) declare(s) that they have no competing interests” Funding: This project was funded as part of the Indiana Complex Care Coordination Collaborative (IC4). IC4 is a grant between Indiana University and the Indiana Family and Social Services Administration funded by enhanced Federal Medical Assistance Percentage (FMAP) funding through Section 9817 of the American Rescue Plan Act (ARPA) as Home and Community Based Services (HCBS) Stabilization Grants, CFDA # 93.778 Medical Assistance Program. Authors' contributions: EM led data management and data analysis, and the manuscript production. JG contributed to data management and data analysis and provided manuscript edits.MC led the IC4 program, contributed to the study conceptualization, and contributed to manuscript production. MP led the study conceptualization, collected data, oversaw data management and analysis, and contributed to manuscript production. Acknowledgements: No additional acknowledgements. References Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529-38. Berry JG, Hall M, Neff J, Goodman D, Cohen E, Agrawal R, et al. Children with medical complexity and Medicaid: spending and cost savings. Health affairs. 2014;33(12):2199-206. Agostiniani R, Nanni L, Langiano T. Children with medical complexity: the change in the pediatric epidemiology. Journal of Pediatric and Neonatal Individualized Medicine (JPNIM). 2014;3(2):e030230-e. Gallo M, Agostiniani R, Pintus R, Fanos V. The child with medical complexity. Italian Journal of Pediatrics. 2021;47:1-7. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of pediatrics & adolescent medicine. 2011;165(11):1020-6. Teicher J, Moore C, Esser K, Weiser N, Arje D, Cohen E, et al. The experience of parental caregiving for children with medical complexity. Clinical pediatrics. 2023;62(6):633-44. Chow EJ, Chen Y, Yasui Y, Baldwin L-M, Hudson MM, Muller T, et al. Communicating cardiovascular health information and improving coordination with primary care: A Childhood Cancer Survivor Study randomized trial. American Society of Clinical Oncology; 2024. Kokorelias KM, Gignac MA, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC health services research. 2019;19:1-11. Bergman DA, Keller D, Kuo DZ, Lerner C, Mansour M, Stille C, et al. Costs and use for children with medical complexity in a care management program. Pediatrics. 2020;145(4). Burrell M, Ciccarelli M. Identifying Children With Medical Complexity for Care Coordination in Primary Care Settings. Clinical Pediatrics. 2023;62(7):781-5. McNeil K, Gemmill M, Abells D, Sacks S, Broda T, Morris CR, et al. Circles of care for people with intellectual and developmental disabilities: Communication, collaboration, and coordination. Canadian Family Physician. 2018;64(Suppl 2):S51-S6. Orkin J, Chan CY, Fayed N, Lin JLL, Major N, Lim A, et al. Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity. BMJ open. 2019;9(8):e028121. Pordes E, Gordon J, Sanders LM, Cohen E. Models of care delivery for children with medical complexity. Pediatrics. 2018;141(Supplement_3):S212-S23. Moore C, Adams S, Beatty M, Dharmaraj B, Desai AD, Bartlett L, et al. Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC. Pediatrics. 2024;154(3). Cohen E, Quartarone S, Orkin J, Moretti ME, Emdin A, Guttmann A, et al. Effectiveness of structured care coordination for children with medical complexity: the complex care for kids Ontario (CCKO) randomized clinical trial. Jama Pediatrics. 2023;177(5):461-71. Cohen E, Lacombe-Duncan A, Spalding K, MacInnis J, Nicholas D, Narayanan UG, et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC health services research. 2012;12:1-11. Van Orne J. Care coordination for children with medical complexity and caregiver empowerment in the process: a literature review. Journal for Specialists in Pediatric Nursing. 2022;27(3):e12387. Kuo DZ, McAllister JW, Rossignol L, Turchi RM, Stille CJ. Care coordination for children with medical complexity: whose care is it, anyway? Pediatrics. 2018;141(Supplement_3):S224-S32. Callahan CM, Boustani M, Sachs GA, Hendrie HC. Integrating care for older adults with cognitive impairment. Current Alzheimer Research. 2009;6(4):368-74. Olson JR, Benjamin PH, Azman AA, Kellogg MA, Pullmann MD, Suter JC, et al. Systematic review and meta-analysis: Effectiveness of wraparound care coordination for children and adolescents. Journal of the American Academy of Child & Adolescent Psychiatry. 2021;60(11):1353-66. Sheinfeld Gorin S, Haggstrom D. The coordination of chronic care: an introduction. Oxford University Press US; 2018. p. 313-7. Diane Shannon M. Effective physician-to-physician communication: an essential ingredient for care coordination. Physician Executive. 2012;38(1):16. Looman WS, Antolick M, Cady RG, Lunos SA, Garwick AE, Finkelstein SM. Effects of a telehealth care coordination intervention on perceptions of health care by caregivers of children with medical complexity: a randomized controlled trial. Journal of Pediatric Health Care. 2015;29(4):352-63. Braun L, Steurer M, Henry D. Healthcare utilization of complex chronically ill children managed by a telehealth-based team. Frontiers in Pediatrics. 2021;9:689572. Weiss MA, Marchese S, Zhang L. Effective care management for children with special health care needs in the era of value-based payment. Clinical pediatrics. 2019;58(9):949-56. Casseus M, Reichman NE. Trends and Patterns in US Pediatric Care Coordination, 2016-2022. The Journal of Pediatrics. 2024:114457. Hirt E, Wright A, Kehring A, Wang Y, Toraño V, Boles J. “Fitting the Pieces Together”: The Experiences of Caregivers of Children With Medical Complexity. Hospital Pediatrics. 2023;13(12):1056-66. Yu J, Henderson C, Cook S, Ray K. Family caregivers of children with medical complexity: health-related quality of life and experiences of care coordination. Academic pediatrics. 2020;20(8):1116-23. Allshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: a view from the front lines. Pediatrics. 2018;141(Supplement_3):S195-S201. Patty NJ, van Meeteren KM, Verdonk M, Ketelaar M, Schuengel C, Willemen AM. Conceptualizing burnout from the perspective of parents of children with complex care needs. PEC innovation. 2024;5:100325. Yamoah J, Brown L. Understanding the types of social support that can mitigate parental burnout in mothers of children with medical complexity. Child: care, health and development. 2023;49(4):732-9. DISABILITIES COCW, COMMITTEE MHIPA, Turchi RM, Antonelli RC, Norwood KW, Jr, Adams RC, et al. Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems. Pediatrics. 2014;133(5):e1451-e60. Adams N, Grieder DM. Treatment planning for person-centered care: Shared decision making for whole health: Academic Press; 2013. Hoover CG, Coller RJ, Houtrow A, Harris D, Agrawal R, Turchi R. Understanding caregiving and caregivers: supporting children and youth with special health care needs at home. Academic Pediatrics. 2022;22(2):S14-S21. Randolph G, Coleman C, Allshouse C, Plant B, Kuo DZ. Measuring what matters to children with medical complexity and their families. Pediatrics. 2024;153(Supplement 1). Thomson J, Shah SS, Simmons JM, Sauers-Ford HS, Brunswick S, Hall D, et al. Financial and social hardships in families of children with medical complexity. The Journal of pediatrics. 2016;172:187-93. e1. Page BF, Hinton L, Harrop E, Vincent C. The challenges of caring for children who require complex medical care at home:‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’. Health Expectations. 2020;23(5):1144-54. Altman L, Zurynski Y, Breen C, Hoffmann T, Woolfenden S. A qualitative study of health care providers’ perceptions and experiences of working together to care for children with medical complexity (CMC). BMC health services research. 2018;18:1-11. Bogetz JF, Bogetz AL, Rassbach CE, Gabhart JM, Blankenburg RL. Caring for children with medical complexity: challenges and educational opportunities identified by pediatric residents. Academic Pediatrics. 2015;15(6):621-5. Donnelly S, Shaw E, Timoney P, Foca M, Hametz P. Parents’ assessment of an advanced-practice nurse and care coordination assistant model medical care coordination program for children with medical complexity. Journal of Pediatric Health Care. 2020;34(4):325-32. McAllister JW, Keehn RM, Rodgers R, Lock TM. Care coordination using a shared plan of care approach: from model to practice. Journal of Pediatric Nursing. 2018;43:88-96. Additional Declarations No competing interests reported. Supplementary Files IC4InterviewThemesExampleQuestions.pdf Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 08 Sep, 2025 Reviews received at journal 03 Sep, 2025 Reviewers agreed at journal 29 Aug, 2025 Reviews received at journal 05 Jul, 2025 Reviewers agreed at journal 24 Jun, 2025 Reviewers agreed at journal 23 Jun, 2025 Reviewers invited by journal 23 Jun, 2025 Submission checks completed at journal 10 Jun, 2025 First submitted to journal 09 Jun, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Munn","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAl0lEQVRIiWNgGAWjYPACGx4QKUGKljTStRxmIF4Lv9jpNOnCHedlDA4wH7zNQ4wWydm526RnnrnNY3CALdmaKC0Gt4FaeNtAWnjMpInSYg/Rcg6ohf8bcVoMpMFaDoBsYSNOi8Tt3M3WvG3JPJKH2Ywt5xCjhX927sbbvG129nzHmx/eeEOMFgRgJk35KBgFo2AUjAJ8AAClHCm/Dx92XgAAAABJRU5ErkJggg==","orcid":"","institution":"Indiana University Bloomington","correspondingAuthor":true,"prefix":"","firstName":"Emily","middleName":"E.","lastName":"Munn","suffix":""},{"id":475247508,"identity":"952d29f0-c5b5-4c24-9a44-5ffcaccda25d","order_by":1,"name":"Jake W. Griffin","email":"","orcid":"","institution":"Indiana University Bloomington","correspondingAuthor":false,"prefix":"","firstName":"Jake","middleName":"W.","lastName":"Griffin","suffix":""},{"id":475247509,"identity":"49f87a7f-2fab-47c2-8f2d-217d29fb5b2c","order_by":2,"name":"Mary Ciccarelli","email":"","orcid":"","institution":"Indiana University Health","correspondingAuthor":false,"prefix":"","firstName":"Mary","middleName":"","lastName":"Ciccarelli","suffix":""},{"id":475247510,"identity":"b87cc90d-4e88-4c23-ac6b-ebc336ee543e","order_by":3,"name":"Melissa M. Pangelinan","email":"","orcid":"","institution":"Indiana University Bloomington","correspondingAuthor":false,"prefix":"","firstName":"Melissa","middleName":"M.","lastName":"Pangelinan","suffix":""}],"badges":[],"createdAt":"2025-01-29 17:23:07","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5925786/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5925786/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":85294704,"identity":"98282acd-c915-4c33-b41d-c370c979408f","added_by":"auto","created_at":"2025-06-24 10:44:53","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":785371,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5925786/v1/720dadef-e63a-4ff1-bb76-498ded0c06e4.pdf"},{"id":85293621,"identity":"fef374a0-f546-473e-820a-4f936572962a","added_by":"auto","created_at":"2025-06-24 10:28:49","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":30979,"visible":true,"origin":"","legend":"","description":"","filename":"IC4InterviewThemesExampleQuestions.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5925786/v1/9a878039e9205587545b6b62.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe term children with medical complexity (CMC) commonly includes those with complex, chronic medical conditions affecting multiple organ systems and requiring regular monitoring by medical professionals and caregivers (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Approximately 3.7\u0026nbsp;million of the 73\u0026nbsp;million US children (~\u0026thinsp;5%) in 2014 were CMC (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Although CMC represents a small percentage of pediatric patients, they represent 30% of overall pediatric healthcare spending and about 34% of Medicaid spending (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The financial stability of the families of CMC is often hampered due to the cost of care, loss of employment, and lack of insurance coverage (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Thus, reducing healthcare spending while maintaining the quality of care for CMC is an important priority for insurance providers, clinicians, and caregivers.\u003c/p\u003e \u003cp\u003eIn this study, we define \u0026ldquo;medical care coordination\u0026rdquo; as the coordination of appointments, specialists, and resources done by medical professionals in conjunction with the patient. This definition aligns with the concept of \u0026ldquo;family-centered care interventions\u0026rdquo; which aim to engage patients and their families in shared decision-making and health care goal setting, thereby improving access to care, communication and information sharing, continuity of care, and providing informational and emotional support to families (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Medical -centered care coordination (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), has been successfully delivered with CMC (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), is one solution to reduce healthcare spending (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) and ensure quality of care (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOutside the US healthcare system (e.g., Canada, Australia, various European countries), care coordination has been incorporated into primary care (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) specialty care (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e), and acute care settings (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Indeed, several systematic reviews (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) have detailed the positive impact of these often nurse-led programs on access to clinical team members, comprehensive and patient-centered care planning, and appointment management.\u003c/p\u003e \u003cp\u003eIn addition to the potential to reduce care utilization and costs, these programs resulted in consistent improvements in various aspects of caregiver health (stress, quality of life, self-efficacy) and satisfaction with care. The added complexity of the US health care system in which private insurance and unique waiver services by state leads to further fragmented and inequitable care for the most vulnerable patients. Beyond the financial benefits, care coordination provides patient and family-centered care to organize the whole care team (primary care physician, specialists, and allied health providers) to ensure the patient receives high-quality, consistent, and holistic care (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Nurse care coordinators or navigators have been embedded in primary care to reduce the burden of navigating insurance, Medicaid waivers, and providers within and across health systems for diverse patients across the lifespan, including dementia (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), mental health (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), and cancer (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Care coordination can improve communication with all medical team members(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e), reduce hospital stays (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e), improve medical system navigation(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), and increase the caregiver\u0026rsquo;s ability to cope with the demands of care workload (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). Yet, there was a consistent reduction in pediatric care coordination from 2016 to 2022 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eCaregiving for a CMC changes every aspect of a caregiver\u0026rsquo;s life (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Caregivers report their identity (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e), physical health (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e), mental health (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), marriage/romantic relationship (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), caring for other children (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), employment (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), financial stability (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), personal time (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e), and social life (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) are all negatively affected by their role as caregivers. Without access to care coordination, caregivers of CMC spend considerable time navigating insurance and medical care across clinical teams (primary care and specialists), pharmacies, medical equipment suppliers, and other service providers (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e), contributing to extremely high caregiver burnout (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). Caregivers need instrumental, informational, and emotional support from their systems of care to prevent burnout (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFamily-centered care coordination comprehensively addresses the care needs of CMC (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). This includes collaboration between the primary medical home, the family, specialists, social workers, and more. The utilization of shared plans of care (SPOC) that are co-created between the families and medical team can help empower families in their care (ADD McAllister) (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). Family -focused care honors the resilience and love that caregivers pour into their CMC (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). This care can build upon the existing support system of the CMC to give them the highest quality of care focused on their goals. Understanding the impact of this style of care coordination on caregivers is vital to help stakeholders understand and address the unmet need for care coordination for children with CMC.\u003c/p\u003e \u003cp\u003eThe Indiana Complex Care Coordination Collaborative (IC4) was developed as part of a 10-state collaborative project for CMC (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). At the time of this study, IC4 was funded by the Indiana Family and Social Services Administration through the Home and Community Based Services (HCBS) Stabilization Grant. The IC4 care coordination model includes training and coaching for nurse care coordinators as they are embedded into primary care practices across Indiana. At the time of this study, 14 care coordinators were trained and embedded in primary care practices across seven medical systems. Anonymous family satisfaction surveys consistent with the methods for the 10-state collaborative project (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://ciswh.org/project/coiin-cmc\u003c/span\u003e\u003cspan address=\"https://ciswh.org/project/coiin-cmc\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e ) were sent to enrolled families at 6-month intervals as part of IC4\u0026rsquo;s quality improvement. Measures include composite ratings of care coordination services, the SPOC use, and quality of care in the medical home. Over time, there was an increase in ratings of care coordination and SPOC, with subtle changes in the quality of care at the medical home. Although these results are promising, it is difficult to determine the extent to which family satisfaction is due uniquely to the role of the care coordinators or other aspects of the IC4 program (e.g., opportunities for parent social support, physician training, collaborative, etc.). The present study provides new insights regarding families\u0026rsquo; perceived impact of care coordination as part of their participation in the IC4 program.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis study employed a qualitative descriptive methodology to explore caregivers\u0026rsquo; experiences with the IC4 care coordination program through semi-structured interviews.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eHuman Ethics and Consent\u003c/h2\u003e \u003cp\u003eThe study consisted of 1-hour semi-structured interviews to examine the effectiveness of the IC4 program. According to the Declaration of Helsinki, the Indiana University Institutional Review Board has approved all procedures. Families were recruited via emailed information letters to the primary caregiver. Caregivers were provided with an explanation of the study. Informed consent was obtained from the caregiver prior to the commencement of the recorded interview.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eIndiana Complex Care Coordination Collaborative\u003c/h3\u003e\n\u003cp\u003eFor the first six months of employment, care coordinators complete 75 hours of training (3 hours per week, for 24 weeks). After the first 6 months, they continue to train 4 hours per month to continually refresh their content knowledge and stay up-to-date with new information. These trainings were conducted in both group and individual coaching formats. All training is conducted as virtual live discussions. One and a half hours a week was spent in group training with coaches and other care coordinators. The 1.5 hours were one-on-one with a coach. The curriculum was developed based on content recommendations from the Camden Coalition, Lucile Packard Foundation, and Ambulatory Nursing Association. The primary care team identifies eligible patients based on a consensus definition: Children with medical complexity were defined as children with three organ systems involved, necessitating longitudinal care from at least three specialists. The care coordinators invited the caregiver and, upon caregiver acceptance, conducted a comprehensive assessment with medical record review and family interview to create a shared plan of care (SPOC) that summarizes the current state of the child and family, the medical history, and plan, including all current service providers and the caregiver and patient\u0026rsquo;s goals. The care coordinators disseminated the SPOC across the care neighborhood, including clinical teams and community services, as requested by the family. The families had access to the SPOC and kept hard copies of it for use with others caring for their CMC. The program used quality indicators to measure outcomes, including a first-month outcome delivered to each family (e.g., scheduling a needed appointment, obtaining specific equipment or supplies, etc.). The care coordinators contacted the caregiver at least quarterly and conducted semi-annual reassessments to maintain current SPOCs. Families have access to their care coordinators as their key point of contact for needs and questions through direct phone lines and electronic messaging throughout the program.\u003c/p\u003e\n\u003ch3\u003eRecruitment and Informed Consent\u003c/h3\u003e\n\u003cp\u003eParticipants were recruited via an email flyer from the cohort of families participating in the IC4 program. A total of 15 caregivers contacted the research team to express interest in the study and completed the demographic survey. 13 participants were scheduled for and completed an interview; the remaining 2 were unable to schedule their interview. Emails with scheduling links and a short demographic survey, including informed consent, were sent to the families. Caregivers also gave verbal consent to be recorded and to participate in the study at the beginning of the interview. Caregivers were included if they had been working with a care coordinator through the IC4 program, were comfortable being recorded, and could complete the 1-hour interview.\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003eCaregivers completed a 25-items survey including information on their age, race, ethnicity, sex, socioeconomic level, and household size. They also asked about their child\u0026rsquo;s age, race, ethnicity, condition, and primary care office. Additionally, they were asked about how long they had been in the IC4 care coordination program. The semi-structured interview and survey were created for this study to better understand the caregivers\u0026rsquo; experiences with the care coordination program. The interview questions were based on the family satisfaction survey delivered as part of program quality improvement. The questions included six overarching themes: caregiver and patient met/unmet needs, quality of medical care, the co-developed shared care plan, caregiver and patient quality of life, caregiver workload, and medical home experience. There were 18 questions posed to the caregivers, with additional follow-up questions based on their responses (i.e., to ask for clarification or further details). These questions are available as supplementary material. Semi-structured interviews were conducted individually via one-hour video conference (Zoom\u0026trade;) with one researcher (MP). The interview was recorded and automatically transcribed through Zoom\u0026rsquo;s built-in software. Participants selected a pseudonym to ensure confidentiality and were referred to with these pseudonyms throughout the interview. A research assistant reviewed the transcripts and edited transcription errors. Data saturation was achieved when no new keywords or codes emerged at the individual level and no new themes emerged at the group level (Kerr, Nixon, \u0026amp; Wild, 2010). A priori, we estimated a minimum of 12 interviews.\u003c/p\u003e\n\u003ch3\u003eAnalysis\u003c/h3\u003e\n\u003cp\u003eThe research team conducted an inductive thematic analysis consistent with Braun and Clarke (2008). The phases of this process were: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) familiarizing yourself with your data, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) generating initial codes, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) searching for themes, (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) reviewing themes, (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) defining and naming themes, and (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) producing the report.\u003c/p\u003e \u003cp\u003eThree research team members (EM, JG, and MP) completed Phase 1. MP conducted the interviews and took notes during the interviews, JG reviewed and edited the transcripts, and EM prepped and uploaded all transcripts into the NVivo 14 (Version 14.24.2) software. JG and EM reviewed all transcripts. Phase 2 was completed by two researchers (JG and EM), who generated 74 unique codes. They then independently reviewed all transcripts in NVivo based on the codebook. For each question, the analytic process was: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) read the transcript, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) chunk the response into smaller sections, and (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) code each of the smaller sections with up to 2 codes. The codebook is available upon request.\u003c/p\u003e \u003cp\u003eThree researchers (EM, JG, MP) completed Phase 3 by inductively formulating broad themes based on the initial coding. The themes were first formulated independently and then discussed collaboratively. The senior researcher (MP) settled disagreements. At this stage, 11 themes were identified. Phase 4 was conducted by three researchers (EM, JG, and MP). All inductive codes were then categorized into themes. Direct quotes and coded sections were checked for each inductive theme. Two additional themes were identified based on the initial coding that did not fit into one of the original 11 themes, resulting in a total of 13 inductive themes. Three researchers (EM, JG, and MP) conducted Phase 5. EM wrote the name and description of each theme, and JG and MP reviewed and provided feedback or edits. Direct quotes that captured the theme were identified. Phase 6 was conducted by three researchers (EM, JG, and MP). The final write-up and report are provided in the results section.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThirteen caregivers completed 1-hour interviews. At the individual level, all participants repeated key words and broad themes within their interviews. At the group level, no new themes emerged after 10 participants were coded. The sample included participants from six pediatric clinics in the IC4 program. The sample characteristics are provided in in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary characteristics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDemographic Information\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eN\u0026thinsp;=\u003c/em\u003e\u0026thinsp;13\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCaregiver Age\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean (STD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e38.54 (11.13) Years\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRange\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e27.2\u0026ndash;66.08 Years\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCaregiver gender n (%)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eParent race n (%)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWhite\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (77%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBlack\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (23%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eEthnicity n (%)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHispanic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNon-Hispanic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (92%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eEstimated Household Income\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnder \u003cspan\u003e$\u003c/span\u003e15,000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e25,000\u0026ndash;34,999\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e35,000\u0026ndash;49,000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e50,000\u0026ndash;74,999\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e75,000\u0026ndash;99,999\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e100,000-149,999\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (21%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo information\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCMC - Age\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean (STD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9.46 (7.08) Years\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRange\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1.7\u0026ndash;21 Years\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCMC - Race\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWhite\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9(69%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBlack\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (31%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCMC - Ethnicity\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHispanic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNon-Hispanic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (92%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCMC- Sex\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (31%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (69%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eCMC- Conditions\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChronic condition requiring daily medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePhysical disability\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIntellectual disability\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMental health condition\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAdditional disabilities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eTime in care coordination program\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0\u0026ndash;3 months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u0026ndash;12 months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1 year\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2 or more years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e*****Insert Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e***\u003c/p\u003e \u003cp\u003eFive themes were identified: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) central role of the care coordinator, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) proactive and personalized support, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) care across the lifespan, (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) emotional support, and (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) navigating healthcare systems. Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e displays the themes, concepts and quotes.\u003c/p\u003e \u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eConcept\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eQuote\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003e\u003cb\u003eCentral Role of Care Coordinator (All participants)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report easy access to their care coordinator as a single point of contact to reduce barriers to medical care and resource \u0026nbsp;(13/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;\u0026hellip;knowing that she is the fast, 1st line of defense, like if something odd is going on, that we can just run it by her instead of messaging like the whole care team\u0026hellip; having just that in my back pocket is invaluable.\u0026rdquo; (Caregiver of a 7-year-old with spina bifida)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that their care coordinator is a trusted health professional who can advocate for them with other health professionals\u0026nbsp;\u0026nbsp;(9/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;We can advocate as parents. But having that other person that has that knowledge and stuff, can use the right words and be able to get what we need across, advocate for us on behalf of our children, and help us advocate to get the needs met, that\u0026rsquo;s invaluable.\u0026rdquo; (Caregiver of a 6-year-old with spina bifida)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that their care coordinator provides informational and instrumental support in understanding and navigating health insurance\u0026nbsp;benefits and eligibility (9/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;... she had found out that we were paying for thickener for her dysphagia out of pocket, and she was like, why are you doing that? She has Medicaid.\u0026rdquo; (Caregiver of a 2-year-old)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e\u003cp\u003e\u003cb\u003eProactive and Personalized Support (All participants)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that their care coordinator reduces the burden of care navigation by being proactive\u0026nbsp;(12/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;I don't just get a text [reminder]. I get the phone call as well... like most people just send you a text. And I'm like, okay, but if I'm doing something, I'll overlook that text.\u0026rdquo;\u0026nbsp;(Caregiver of a 3-year-old with a rare genetic condition)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that the process of creating the SPOC with their care coordinator resulted in a plan that reflected their needs and goals\u0026nbsp;(5/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;And like I feel like she actually likes takes the time to listen to me. Instead of just telling me what we need. She listens to see what I'm telling her ...the way she presented it made me feel like this is, you know, my plan, and you know she's asking me like, what do you want? What do you see? \u0026hellip; 'cause you know him the best.\u0026rdquo;\u0026nbsp; (Caregiver of a 9-year-old with Duchenne Muscular Dystrophy)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that their care coordinator and SPOC allow them to be seen as people, not a number or medical record\u0026nbsp;(4/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;... she sees me as a person and not as my son's mother. A lot of his other doctors, I've kind of just faded away as a person... people will address me as \u0026lsquo;mom\u0026rsquo; in the clinics, whereas she [the CC] will call me by my name.\u0026rdquo;\u0026nbsp; (Caregiver of a 16 year old with intellectual disability)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies appreciate that the SPOC can be easily\u0026nbsp;disseminated to other healthcare and service professionals and other family members\u0026nbsp;\u0026nbsp;\u0026nbsp;(10/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;Having a copy of that care plan in my vehicle is so reassuring for me, because if, god forbid, I get in a car accident. I'm able to tell a 1st responder, \"hey all of his needs are right here in this paperwork. This is everything about him\". Stuff like that is extremely important that people don't normally think about. Just having everything in one package where I don't feel like I'm forgetting anything is really nice.\u0026rdquo; (Caregiver of a 5 year old with spastic quadriplegia)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eCare across the lifespan (10/13)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that care coordination would best begin at birth or the time of diagnosis and continue through the transition to adulthood\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\"Start this for parents of kiddos, who are just like a month old, like straight out of the NICU. That would be huge because the 1st year of life with Spina Bifida is so much crazier... You didn\u0026rsquo;t know what you didn\u0026rsquo;t have; it's like having someone on your team that gets the whole picture (of your child\u0026rsquo;s care) \u0026hellip; We didn\u0026rsquo;t know what we were missing, [this is] a special program we wish we always had.\u0026rdquo; (Caregiver of a 7 year old with Spina Bifida)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e\u003cp\u003e\u003cb\u003eEmotional Support (All participants)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report that their care coordinator is personable and kind while also being knowledgeable and efficient\u0026nbsp;(11/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;She's empathetic. Compassionate. She, you know, I really feel like she actually cares about (child\u0026rsquo;s name) and what he needs.\u0026rdquo; (Caregiver of a 9 year old with Duchenne Muscular Dystrophy)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eSome caregivers reported feelings of loneliness and a lack of access to emotional supports\u0026nbsp;\u0026nbsp;\u0026nbsp;(4/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;I didn't realize I hadn't talked to anybody [socially] in like 9 weeks.\u0026rdquo; (Caregiver of a 20 year old with an intellectual disability)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003e Some caregivers and children reported difficulty engaging with others who do not understand their experiences as a family with complex medical needs.\u0026nbsp;(3/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;I almost feel like there's two different worlds. There's like the caregiving world and the non-caregiving world. And it's so hard for them to understand, and it's so hard for me not to talk about it.\u0026rdquo; (Caregiver of a 16 year old with an intellectual disabilty)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eSome caregivers reported family members or religious organizations provided instrumental and emotional support\u0026nbsp;(9/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;We're super involved in our church and multiple different ministries. They just tag along with us, too. Our church is very inclusive, and we trust so many of them... for us, I think that is a huge part of our social-emotional wellness.\u0026rdquo; (Caregiver of a 7 year old with Spina Bifida)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eNavigating the Healthcare System (11/13)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003eFamilies report prior difficulties with communicating with and navigating healthcare system and finding resources\u0026nbsp; (11/13)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u0026ldquo;And we would call sometimes nobody answered... there's nobody like answering the phone. So sometimes we'd have to like call all day to try to get hold of somebody.\u0026rdquo; (Renee, a caregiver of two medically complex children)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e*****Insert Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e***\u003c/p\u003e\n\u003ch3\u003eTheme 1: Central role of the care coordinator\u003c/h3\u003e\n\u003cp\u003e \u003cem\u003e\u0026ldquo;Yeah, I think the main thing is just knowing that she is such a fast 1st line of defense like, if something odd is going on that we can just run it by her instead of messaging like the whole care team. So, I think, having just that in my back pocket is invaluable.\u0026rdquo; -Caregiver of a 7 year-old with spina bifida\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We recently moved. I misplaced a full bottle of [medicine], and we were panicked. I got on that pMD (electronic messaging system). Our [care coordinator] was just amazing. She very, very quickly figured out what we could do and how we could get a backup. It wasn't the same medicine, but we could get a backup prednisone instead. And it was awesome. It was really awesome. How quickly they were able to react. If that app had not existed, there would have been a lot more.\u0026rdquo; (Caregiver of a 9 year-old with Duchenne muscular dystrophy)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe care coordinator is a single point of contact that reduces barriers to care. They are considered a trusted advocates and liaisons with other health care practitioners. The care coordinator is instrumental in supporting the caregiver\u0026rsquo;s socioemotional wellness and reducing the care workload. Rather than making multiple phone calls to the same or different practices, caregivers contacted their care coordinator for any problem. Caregivers reported faster response times, better access to their medical professionals, and a wealth of resources provided by the care coordinator. The care coordinator could access medical supplies or medications that were previously unavailable to the caregiver. The care coordinator provided support to understand and navigate health insurance benefits and eligibility. Families that did not know they were eligible for Medicaid waivers or other resources were supported in applying for and gaining access to these resources.\u003c/p\u003e\n\u003ch3\u003eTheme 2: Care coordinators provide proactive and personalized support\u003c/h3\u003e\n\u003cp\u003e \u003cem\u003eI mean before they [the care coordinator] came along, I mean, I was always like a piece of paper flapping in the wind. Where do I go next? Where do I go next, you know? And it's just, oh, my gosh! Such a relief knowing that I can text her or email her, and she gets right back with me. -Caregiver of a 19-year-old with autism\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe care coordinator proactively reduced the burden of navigating healthcare and related systems. Caregivers expressed how their care coordinator helped reduce the burden of planning and scheduling across different providers. The care coordinator offered possible solutions to challenges and assisted with future planning. Caregivers expressed an intense sense of relief knowing that the care coordinator could provide scheduling assistance, resource identification, appointment reminders, and more.\u003c/p\u003e \u003cp\u003eThe care coordinator worked with the caregiver and patient to create the Shared Plan of Care (SPOC) document, which reflected family\u0026rsquo;s needs and goals, enabling the caregiver and patient to feel recognized as people rather than a medical record. Caregivers discussed how the SPOC included their goals and preferences in addition to documenting typical medical information (i.e., medical conditions, health care providers, medications, treatments, etc.) Caregivers appreciated that the SPOC can be easily disseminated to other healthcare and service professionals as well as family members or other informal care providers. One caregiver mentioned keeping extra copies with them in case of an emergency in which they were unable to explain their child\u0026rsquo;s needs to others. Others reported using the SPOC at Individualized Education Plan (IEP) meetings to explain their child\u0026rsquo;s medical needs and goals, and to assist in school-based planning.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Care across the lifespan\u003c/h2\u003e \u003cp\u003e \u003cem\u003e\"Start this [the care coordination program] for parents of kiddos, who are just like a month old, like straight out of the NICU. That would be huge because the 1st year of life with Spina Bifida is so much crazier... You didn\u0026rsquo;t know what you didn\u0026rsquo;t have; it's like having someone on your team that gets the whole picture [of your child\u0026rsquo;s care]\u0026hellip; We didn\u0026rsquo;t know what we were missing, [this is] a special program we wish we always had.\u0026rdquo; -Caregiver of a 7 year-old with spina bifida\u003c/em\u003e \u003c/p\u003e \u003cp\u003eCaregivers emphasized the importance of starting care coordination early, at birth or at the time of diagnosis, and continuing through the transition to adulthood. Caregivers whose families received care coordination since the birth of their CMC discussed how important it was throughout their child\u0026rsquo;s journey. Others discussed wishing they had a care coordinator at birth or the time of diagnosis. The care coordinator was instrumental in reducing the stress of the caregivers of teenagers planning the transition from pediatric to adult primary care and those with concerns about medical guardianship.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4: Emotional support\u003c/h2\u003e \u003cp\u003e\u003cem\u003e \u0026ldquo;She's really easy to talk to and stuff like, you know like, if I'm having any issues like personally and stuff like, you know, if I just talked to her like sometimes just when we talk on the phone and stuff, it leads to just communicating like we're friends.\u0026rdquo; -Caregiver of a 6 year old with spina bifida\u003c/em\u003e\u003c/p\u003e \u003cp\u003eFamilies appreciated that the care coordinators were personable, kind, and efficient. For many, the care coordinator acted as an emotional support system. However, some still feel very lonely and isolated. Some caregivers considered the care coordinator a friend. The care shown by the care coordinator provided a necessary safe space for the caregivers to express their overwhelm and isolation.\u003c/p\u003e \u003cp\u003e Some caregivers reported that family members or religious organizations provided instrumental and emotional support. Caregivers reported the benefits of having a supportive partner in the primary caregiver\u0026rsquo;s life who provided instrumental and emotional support. Some discussed how siblings and cousins helped their CMCs connect socially. Others mentioned how personal acceptance and others\u0026rsquo; acceptance of their CMCs helped improve their ability to integrate into the community. Finally, some discussed the importance of faith ministries welcoming them.\u003c/p\u003e \u003cp\u003eHowever, some caregivers expressed loneliness in caregiving for a CMC. They discussed how they often feel like the only advocate and that they lack a social support system to help them care for their child. Although IC4 provides a parent support group (Parent Cafes) and the care coordinators recommended the Parent Cafes to all caregivers, only four caregivers mentioned attending. Two mentioned that they did not participate in the Parent Cafe because the online format was not conducive to socializing or that the Parent Cafes were not offered at a time that worked with their schedules. Some caregivers and children reported difficulty engaging with others who do not understand their experiences as a family with complex medical needs.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eTheme 5: Navigating healthcare systems\u003c/h2\u003e \u003cp\u003e\u0026ldquo;And we would call sometimes nobody answered... there's nobody like answering the phone. So sometimes we'd have to like call all day to try to get hold of somebody.\u0026rdquo; Caregiver of two medically complex children\u003c/p\u003e \u003cp\u003eWithout the care coordinator, caregivers reported difficulties communicating with healthcare providers and locating appropriate resources. Caregivers reported considerable obstacles to receiving quality medical care before participating in the care coordination program. They expressed the overwhelming stress of scheduling medical appointments and accessing primary and specialty care. They reported calling their primary care clinic, often several times, or leaving a message and waiting days to respond to simple questions. These caregivers also lamented that it would take months to speak with or schedule appointments with specialists. Caregivers mentioned that they were overwhelmed by the process and steps for obtaining medical and community support to care for their CMC.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study gained unique insights into caregivers' perceptions of the impact of care coordinators on their family\u0026rsquo;s access to quality medical care and community resources, care workload, and the quality of life for caregivers and caregivers of the chronically ill (CMC). The themes represent the perceptions of 13 caregivers in the IC4 program. Unanimously, caregivers reported that care coordinators provide substantial instrumental, informational, and emotional support in accessing medical systems and resources, planning appointments and setting goals, and reducing patient care workload.\u003c/p\u003e \u003cp\u003ePrevious research established the financial benefits of care coordination in decreasing the cost of medical care for CMC (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). However, funding for care coordination for CMC is not established federally (i.e., no billable code), resulting in a reduction of care coordination for CMC despite the significant benefit to payers and patients (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Many families of those with CMC experience financial hardships and need supplementary insurance to cover medical costs (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Policymakers and insurance groups should consider covering care coordination activities for CMC, which makes sense financially and is relevant to the quality of care. The caregivers in the present study discussed that before care coordination programs they faced many barriers to accessing medical care (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Our caregivers reported being overwhelmed with trying to access both healthcare and community resources. Others have noted that parents/caregivers are overloaded as they \u0026ldquo;go between\u0026rdquo; their CMC and the medical team (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). In this study, several caregivers discussed the stress of their role as the only person advocating and planning for their child before enrolling in the care coordination program and receiving help from a care coordinator. Despite those who had support from family members, in-home nurses, or other caregivers, the primary caregivers still reported that they carry the brunt of the care navigation workload. This level of care workload leads to burnout (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e), lost employment revenue, and negative caregiver health outcomes (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Reducing the care workload is a key role of the care coordinator.\u003c/p\u003e \u003cp\u003eEvery caregiver described how the CC was their single point of contact or primary information resource. Previous literature has indicated that families of CMCs can fall through the cracks attempting to navigate care for their child(\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e) resulting in discontinuity of care. Care coordinators can fill in the gaps (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). The ability to direct message the CC to answer a question or through the CCs gained access to other care team members was invaluable. In addition, the CC triaged health concerns, directed families to the right next source of care, and followed up after receiving care. Caregivers reported they received increased access to the resources and health information they needed and an advocate across the care team with other medical professionals.\u003c/p\u003e \u003cp\u003eIn addition to providing instrumental and informational support to navigate the medical system, care coordinators offered emotional and social support by listening to the needs of caregivers, giving them a safe space to express themselves, and treating them as a person. This is a unique finding that had not been previously reported in the literature. This is critically important as it may help improve the caregiver\u0026rsquo;s quality of life. Considering the reports of poor social lives and trouble relating to others observed here and by others (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e), providing emotional and social support may be a critical service provided by the care coordinator that was not previously highlighted.\u003c/p\u003e \u003cp\u003eDespite the support provided by the care coordinator, caregivers still reported persistent unmet social needs, which may require additional support, such as access to parent-to-parent organizations and support groups, as noted in the literature (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Future research needs to identify and evaluate ways to meet the social needs of CMC caregivers.\u003c/p\u003e \u003cp\u003e The caregivers in this study recognized the need for care coordination from the start of their journey, at birth or diagnosis, and into adulthood. In particular, the transition from pediatric care to adult practices is of high concern for CMC and caregivers as they navigate guardianship and decision-making with an adult child. This finding echos the findings of others (White et al., 2018). The care coordinator helped plan for the future by applying a proactive approach family center approach and incorporating transition plans into the written SPOC. Although SPOCs have been well established in the care coordination literature and are beneficial at many levels (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e), ensuring that transition goals and needs are included should be standard practice.\u003c/p\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThis study was conducted on a small group of female caregivers of CMC in one state participating in a care coordination program that may differ from other care coordination programs nationally. As such, these results may not be generalizable outside of the present program. However, the sample was diverse in the ages of the caregivers and the type of medical characteristics of the children. With this said, this qualitative study provides unique insights in the words of the caregivers to the impact of a medical care coordinator. Although care coordination programs may differ in terms of the types of services provided and staff members involved, and there may be unique characteristics of the care coordinators included in the present study, \u003cem\u003eany\u003c/em\u003e instrumental, informational, and emotional support for caregivers of CMC helps to address important and often unmet needs.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eCare coordination addressed unmet needs and organized and improved the care received by CMCs and their families. Caregivers appreciated the value of family-centered care with a highly trained and respected medical professional who can serve as an advocate and support to reduce patient care workload. Families appreciated the proactive approach to family-centered care. While care coordination does not address the complex and individualized needs of all CMC caregivers, it does lead to meaningful improvements in medical care satisfaction and improved patient care.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCMC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003echildren with medical complexity\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eIC4\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eThe Indiana Complex Care Coordination Collaborative\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSPOC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eShared Plan of Care\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate:\u0026nbsp;The study consisted of 1-hour semi-structured interviews to examine the effectiveness of the IC4 program. Per the Declaration of Helsinki, the Indiana University Institutional Review Board approved all procedures. Families were recruited via emailed information letters to the primary caregiver. Caregivers were provided with an explanation of the study. Informed consent was provided by the caregiver before the beginning of the recorded interview.\u0026nbsp;Clinical trial number: not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u003c/strong\u003e All participants consent to being a part of the research study and for publication. All names listed in the documents are pseudonyms given to the participants to maintain their anonymity.\u0026nbsp;\u0026nbsp;All research participants consented to this method. \u0026nbsp;Written informed consent for publication of their clinical details was obtained from the patient/parent/legal guardian/relative of the patient.\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials: Data not available\u003c/p\u003e\n\u003cp\u003eCompeting Interests: The author(s) declare(s) that they have no competing interests”\u003c/p\u003e\n\u003cp\u003eFunding:\u0026nbsp;This project was funded as part of the Indiana Complex Care Coordination Collaborative (IC4). IC4 is a grant between Indiana University and the Indiana Family and Social Services Administration funded by enhanced Federal Medical Assistance Percentage (FMAP) funding through Section 9817 of the American Rescue Plan Act (ARPA) as Home and Community Based Services (HCBS) Stabilization Grants, CFDA # 93.778 Medical Assistance Program.\u003c/p\u003e\n\u003cp\u003eAuthors' contributions: EM led data management and data analysis,\u0026nbsp;and the manuscript production. JG contributed to data management and data analysis and provided manuscript edits.MC led the IC4 program, contributed to the study conceptualization, and contributed to manuscript production. MP led the study conceptualization, collected data, oversaw data management and analysis, and contributed to manuscript production.\u003c/p\u003e\n\u003cp\u003eAcknowledgements: No additional acknowledgements.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eCohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529-38.\u003c/li\u003e\n \u003cli\u003eBerry JG, Hall M, Neff J, Goodman D, Cohen E, Agrawal R, et al. Children with medical complexity and Medicaid: spending and cost savings. Health affairs. 2014;33(12):2199-206.\u003c/li\u003e\n \u003cli\u003eAgostiniani R, Nanni L, Langiano T. Children with medical complexity: the change in the pediatric epidemiology. Journal of Pediatric and Neonatal Individualized Medicine (JPNIM). 2014;3(2):e030230-e.\u003c/li\u003e\n \u003cli\u003eGallo M, Agostiniani R, Pintus R, Fanos V. The child with medical complexity. Italian Journal of Pediatrics. 2021;47:1-7.\u003c/li\u003e\n \u003cli\u003eKuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of pediatrics \u0026amp; adolescent medicine. 2011;165(11):1020-6.\u003c/li\u003e\n \u003cli\u003eTeicher J, Moore C, Esser K, Weiser N, Arje D, Cohen E, et al. The experience of parental caregiving for children with medical complexity. Clinical pediatrics. 2023;62(6):633-44.\u003c/li\u003e\n \u003cli\u003eChow EJ, Chen Y, Yasui Y, Baldwin L-M, Hudson MM, Muller T, et al. Communicating cardiovascular health information and improving coordination with primary care: A Childhood Cancer Survivor Study randomized trial. American Society of Clinical Oncology; 2024.\u003c/li\u003e\n \u003cli\u003eKokorelias KM, Gignac MA, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC health services research. 2019;19:1-11.\u003c/li\u003e\n \u003cli\u003eBergman DA, Keller D, Kuo DZ, Lerner C, Mansour M, Stille C, et al. Costs and use for children with medical complexity in a care management program. Pediatrics. 2020;145(4).\u003c/li\u003e\n \u003cli\u003eBurrell M, Ciccarelli M. Identifying Children With Medical Complexity for Care Coordination in Primary Care Settings. Clinical Pediatrics. 2023;62(7):781-5.\u003c/li\u003e\n \u003cli\u003eMcNeil K, Gemmill M, Abells D, Sacks S, Broda T, Morris CR, et al. Circles of care for people with intellectual and developmental disabilities: Communication, collaboration, and coordination. Canadian Family Physician. 2018;64(Suppl 2):S51-S6.\u003c/li\u003e\n \u003cli\u003eOrkin J, Chan CY, Fayed N, Lin JLL, Major N, Lim A, et al. Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity. BMJ open. 2019;9(8):e028121.\u003c/li\u003e\n \u003cli\u003ePordes E, Gordon J, Sanders LM, Cohen E. Models of care delivery for children with medical complexity. Pediatrics. 2018;141(Supplement_3):S212-S23.\u003c/li\u003e\n \u003cli\u003eMoore C, Adams S, Beatty M, Dharmaraj B, Desai AD, Bartlett L, et al. Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC. Pediatrics. 2024;154(3).\u003c/li\u003e\n \u003cli\u003eCohen E, Quartarone S, Orkin J, Moretti ME, Emdin A, Guttmann A, et al. Effectiveness of structured care coordination for children with medical complexity: the complex care for kids Ontario (CCKO) randomized clinical trial. Jama Pediatrics. 2023;177(5):461-71.\u003c/li\u003e\n \u003cli\u003eCohen E, Lacombe-Duncan A, Spalding K, MacInnis J, Nicholas D, Narayanan UG, et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC health services research. 2012;12:1-11.\u003c/li\u003e\n \u003cli\u003eVan Orne J. Care coordination for children with medical complexity and caregiver empowerment in the process: a literature review. Journal for Specialists in Pediatric Nursing. 2022;27(3):e12387.\u003c/li\u003e\n \u003cli\u003eKuo DZ, McAllister JW, Rossignol L, Turchi RM, Stille CJ. Care coordination for children with medical complexity: whose care is it, anyway? Pediatrics. 2018;141(Supplement_3):S224-S32.\u003c/li\u003e\n \u003cli\u003eCallahan CM, Boustani M, Sachs GA, Hendrie HC. Integrating care for older adults with cognitive impairment. Current Alzheimer Research. 2009;6(4):368-74.\u003c/li\u003e\n \u003cli\u003eOlson JR, Benjamin PH, Azman AA, Kellogg MA, Pullmann MD, Suter JC, et al. Systematic review and meta-analysis: Effectiveness of wraparound care coordination for children and adolescents. Journal of the American Academy of Child \u0026amp; Adolescent Psychiatry. 2021;60(11):1353-66.\u003c/li\u003e\n \u003cli\u003eSheinfeld Gorin S, Haggstrom D. The coordination of chronic care: an introduction. Oxford University Press US; 2018. p. 313-7.\u003c/li\u003e\n \u003cli\u003eDiane Shannon M. Effective physician-to-physician communication: an essential ingredient for care coordination. Physician Executive. 2012;38(1):16.\u003c/li\u003e\n \u003cli\u003eLooman WS, Antolick M, Cady RG, Lunos SA, Garwick AE, Finkelstein SM. Effects of a telehealth care coordination intervention on perceptions of health care by caregivers of children with medical complexity: a randomized controlled trial. Journal of Pediatric Health Care. 2015;29(4):352-63.\u003c/li\u003e\n \u003cli\u003eBraun L, Steurer M, Henry D. Healthcare utilization of complex chronically ill children managed by a telehealth-based team. Frontiers in Pediatrics. 2021;9:689572.\u003c/li\u003e\n \u003cli\u003eWeiss MA, Marchese S, Zhang L. Effective care management for children with special health care needs in the era of value-based payment. Clinical pediatrics. 2019;58(9):949-56.\u003c/li\u003e\n \u003cli\u003eCasseus M, Reichman NE. Trends and Patterns in US Pediatric Care Coordination, 2016-2022. The Journal of Pediatrics. 2024:114457.\u003c/li\u003e\n \u003cli\u003eHirt E, Wright A, Kehring A, Wang Y, Tora\u0026ntilde;o V, Boles J. \u0026ldquo;Fitting the Pieces Together\u0026rdquo;: The Experiences of Caregivers of Children With Medical Complexity. Hospital Pediatrics. 2023;13(12):1056-66.\u003c/li\u003e\n \u003cli\u003eYu J, Henderson C, Cook S, Ray K. Family caregivers of children with medical complexity: health-related quality of life and experiences of care coordination. Academic pediatrics. 2020;20(8):1116-23.\u003c/li\u003e\n \u003cli\u003eAllshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: a view from the front lines. Pediatrics. 2018;141(Supplement_3):S195-S201.\u003c/li\u003e\n \u003cli\u003ePatty NJ, van Meeteren KM, Verdonk M, Ketelaar M, Schuengel C, Willemen AM. Conceptualizing burnout from the perspective of parents of children with complex care needs. PEC innovation. 2024;5:100325.\u003c/li\u003e\n \u003cli\u003eYamoah J, Brown L. Understanding the types of social support that can mitigate parental burnout in mothers of children with medical complexity. Child: care, health and development. 2023;49(4):732-9.\u003c/li\u003e\n \u003cli\u003eDISABILITIES COCW, COMMITTEE MHIPA, Turchi RM, Antonelli RC, Norwood KW, Jr, Adams RC, et al. Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems. Pediatrics. 2014;133(5):e1451-e60.\u003c/li\u003e\n \u003cli\u003eAdams N, Grieder DM. Treatment planning for person-centered care: Shared decision making for whole health: Academic Press; 2013.\u003c/li\u003e\n \u003cli\u003eHoover CG, Coller RJ, Houtrow A, Harris D, Agrawal R, Turchi R. Understanding caregiving and caregivers: supporting children and youth with special health care needs at home. Academic Pediatrics. 2022;22(2):S14-S21.\u003c/li\u003e\n \u003cli\u003eRandolph G, Coleman C, Allshouse C, Plant B, Kuo DZ. Measuring what matters to children with medical complexity and their families. Pediatrics. 2024;153(Supplement 1).\u003c/li\u003e\n \u003cli\u003eThomson J, Shah SS, Simmons JM, Sauers-Ford HS, Brunswick S, Hall D, et al. Financial and social hardships in families of children with medical complexity. The Journal of pediatrics. 2016;172:187-93. e1.\u003c/li\u003e\n \u003cli\u003ePage BF, Hinton L, Harrop E, Vincent C. The challenges of caring for children who require complex medical care at home:\u0026lsquo;The go between for everyone is the parent and as the parent that\u0026rsquo;s an awful lot of responsibility\u0026rsquo;. Health Expectations. 2020;23(5):1144-54.\u003c/li\u003e\n \u003cli\u003eAltman L, Zurynski Y, Breen C, Hoffmann T, Woolfenden S. A qualitative study of health care providers\u0026rsquo; perceptions and experiences of working together to care for children with medical complexity (CMC). BMC health services research. 2018;18:1-11.\u003c/li\u003e\n \u003cli\u003eBogetz JF, Bogetz AL, Rassbach CE, Gabhart JM, Blankenburg RL. Caring for children with medical complexity: challenges and educational opportunities identified by pediatric residents. Academic Pediatrics. 2015;15(6):621-5.\u003c/li\u003e\n \u003cli\u003eDonnelly S, Shaw E, Timoney P, Foca M, Hametz P. Parents\u0026rsquo; assessment of an advanced-practice nurse and care coordination assistant model medical care coordination program for children with medical complexity. Journal of Pediatric Health Care. 2020;34(4):325-32.\u003c/li\u003e\n \u003cli\u003eMcAllister JW, Keehn RM, Rodgers R, Lock TM. Care coordination using a shared plan of care approach: from model to practice. Journal of Pediatric Nursing. 2018;43:88-96.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Family-centered care, health care quality, care workload","lastPublishedDoi":"10.21203/rs.3.rs-5925786/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5925786/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eThe Indiana Complex Care Coordination Collaborative (IC4) is a statewide model of care coordination aimed at improving the quality of medical care for children with medical complexity (CMC) by training and embedding nurse care coordinators in primary care practices. This study examines the impact of IC4 care coordinators on caregivers’ and patients’ quality of medical care, access to medical and community resources, care workload, and the quality of life of caregivers and CMC.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eCaregivers of CMC (\u003cem\u003en \u003c/em\u003e= 13) completed one-hour semi-structured interviews focused on met/unmet needs, quality of medical care, co-developed shared plan of care, caregiver/patient quality of life, caregiver workload, and medical home experience. Using NVIVO, researchers used a codebook to conduct an inductive thematic analysis of the interview transcripts. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e The thematic analysis was revealed five overarching themes: (1) central role of the care coordinator, (2) proactive and personalized support, (3) care across the lifespan, (4) emotional support, and (5) navigating healthcare systems. Caregivers reported that they considered \u0026nbsp;their care coordinator a trusted health professional who can advocate for them with other health professionals.\u003cem\u003e \u003c/em\u003eFamilies appreciated that the shared plan of care created with the care coordinator can be easily disseminated to other healthcare and service professionals, as well as other family\u003cem\u003e \u003c/em\u003emembers,\u003cem\u003e \u003c/em\u003eand helps them be seen as individuals, not just as a medical record.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003e Care coordination can address unmet needs and greatly improve the quality of and access to care received by CMCs and their families. Unanimously, caregivers report the substantial instrumental, informational, and emotional support care coordinators (CCs) provide to access medical systems, resources, planning, and reducepatient care workload. Additionally, several caregivers reported substantial social support from the CC. However, several caregivers still reported feelings of loneliness and difficulties engaging with families without CMC.\u003c/p\u003e","manuscriptTitle":"The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-24 10:28:44","doi":"10.21203/rs.3.rs-5925786/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-09-08T07:46:14+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-03T06:20:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"180587170332839588641944006782516036976","date":"2025-08-29T07:25:02+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-05T16:15:51+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"7778455515743216288926381468698377408","date":"2025-06-24T15:49:50+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"256526405770156497495934871007371960562","date":"2025-06-23T14:26:06+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-23T06:40:49+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-06-10T11:47:26+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2025-06-09T20:03:02+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"cdf9e492-52b4-47e5-b3e3-5cf898517320","owner":[],"postedDate":"June 24th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-19T21:53:16+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-24 10:28:44","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5925786","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5925786","identity":"rs-5925786","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}