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

Abstract

Background

The Indiana Complex Care Coordination Collaborative (IC4) is a statewide model of care coordination design to enhance 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 the patients and families 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 reduce patient 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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12887-026-07112-x.

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, “medical care coordination” refers to the collaborative management of appointments, specialists, and resources by medical professionals and patients. This aligns with family-centered care, which promotes shared decision-making and goal setting to enhance access, communication, continuity, and emotional support [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 [11–13] 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 reducing care utilization and costs, care coordination programs consistently improve caregiver outcomes, including stress, quality of life, and self-efficacy. The complexity of the U.S. healthcare system, marked by private insurance and state-specific waivers, creates fragmented, inequitable care for vulnerable patients. Beyond financial benefits, care coordination fosters patient- and family-centered care by organizing the full care team to deliver consistent, high-quality, and holistic support [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 [33, 34]. Family -focused care honors the resilience and love that caregivers pour into their CMC [35]. 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 [36]. 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. Although these survey 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 (IRB #24482). 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 h of training (3 h per week, for 24 weeks). After the first 6 months, they continue to train 4 h 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 h 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 [37, 38]. The primary care team identified children with medical complexity defined as having three organ systems involved and requiring ongoing care from at least three specialists. Upon caregiver consent, care coordinators conducted a comprehensive assessment through medical record review and family interviews to develop a Shared Plan of Care (SPOC), outlining the child’s medical history, current providers, and family goals. The SPOC was shared with clinical and community teams as requested, and families received hard copies for use with other caregivers. Quality indicators tracked outcomes, including a first-month milestone (e.g., scheduling appointments or securing equipment). Care coordinators maintained quarterly contact, performed semi-annual reassessments, and remained accessible via phone and electronic messaging throughout the program.

Recruitment and informed consent

This study utilized a purposive sampling strategy aimed at recruiting primary caregivers enrolled in the IC4 care coordination program across diverse clinical sites. Participants were recruited via an email informational flyer sent to the broader cohort of families participating in the statewide IC4 initiative. Although participation was self-selected based on responses to the email flyer, the research team monitored demographic intakes to ensure the sample captured a broad spectrum of caregiver backgrounds, geographic representation across six distinct pediatric clinics, varying lengths of time in the program, and a wide distribution of child ages and medical diagnoses. A total of 15 caregivers initiated contact and completed the demographic survey, resulting in 13 completed interviews (2 individuals were excluded due to scheduling conflicts). The final sample size of 13 was methodologically justified through the operational achievement of data saturation, defined a priori as the point where no new codes, keywords, or properties emerge at the individual level, and no new overarching themes develop at the group level. Our team estimated a minimum requirement of 12 interviews based on qualitative literature standards for descriptive thematic analyses. During the sequential analysis, group-level data saturation was successfully achieved by the 10th coded transcript.

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 semi-structured interview guide and demographic survey were developed specifically for this study to capture the nuanced experiences of caregivers within the IC4 care coordination program. To ensure content validity, the interview questions were systematically derived from the standardized family satisfaction survey used for the multi-state collaborative project’s quality improvement initiatives. The core research team (including a pediatrician specializing in complex care and researchers trained in qualitative methodology) reviewed the initial draft to ensure the questions comprehensively covered six predetermined evaluation domains: met/unmet needs, quality of medical care, the co-developed Shared Plan of Care (SPOC), caregiver/patient quality of life, care workload, and medical home experience.

Given the nature of a semi-structured interview, the tool was refined by the conversations with the caregivers. While a formal pilot study was not conducted, the inherent flexibility of the semi-structured interview format allowed the investigator to adaptively rephrase questions and dynamically probe novel insights in real-time, functioning as an iterative refinement process across successive interviews. 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, non-leading questions). The 18 questions are available as supplementary material.

All semi-structured interviews were conducted individually via a secure video conferencing platform by a female investigator (MP). The interviewer is a PhD-level senior researcher with advanced graduate coursework and extensive experience in qualitative design and inductive thematic analysis. To mitigate potential response bias, the interviewer was completely independent of the clinical operations of the IC4 program and had no prior relationship or contact with any of the participants before the scheduled sessions. At the commencement of each session, the interviewer conducted a transparent introduction detailing her academic credentials, her role as an independent evaluator, and the structural relationship between the university research team and the IC4 collaborative. Caregivers were explicitly assured that their participation, feedback, or critiques of the program would remain completely confidential and would have no bearing on the healthcare services or care coordination status their child received within their primary care practices.

The interview was recorded and automatically transcribed through Zoom’s built-in software. 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 following Braun and Clarke’s (2006) six-phase framework [39]. Three team members (EM, JG, MP) completed Phase 1 by familiarizing themselves with the data: MP conducted and took notes during interviews, JG edited transcripts, and EM uploaded them into NVivo 14. JG and EM reviewed all transcripts. In Phase 2, JG and EM generated 74 unique codes and independently coded all transcripts in NVivo using a structured process: reading each transcript, segmenting responses, and assigning up to two codes per segment. The codebook is available upon request. Phase 3 involved independently identifying broad themes, followed by collaborative discussion. Disagreements were resolved by the senior researcher (MP), resulting in 11 initial themes. In Phase 4, codes were grouped into themes and reviewed with supporting quotes; two additional themes were added, totaling 13.

During Phase 5, EM drafted theme names and descriptions, which JG and MP reviewed and refined. Phase 6 involved collaborative synthesis and final reporting, presented 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

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)	“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 “…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 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”
	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 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
	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 disability)
	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 to call all day to try to get hold of somebody.” (Renee, a caregiver of two medically complex children)

Theme 1: Central role of the care coordinator

Care coordinators played a pivotal role as trusted advocates and single points of contact, significantly reducing barriers to care and caregiver workload. Instead of navigating multiple providers independently, caregivers relied on their coordinator for any issue, streamlining communication and problem-solving. Families reported faster response times, improved access to medical professionals, and a broader range of resources. Coordinators facilitated access to previously unavailable supplies and medications and provided essential support in understanding health insurance benefits and eligibility. Many families were unaware of their eligibility for Medicaid waivers or other services until guided by their coordinator, who assisted in the application process and ensured follow-through.

Theme 2: Care coordinators provide proactive and personalized support

Care coordinators proactively reduced the burden of navigating complex healthcare and social systems. Caregivers described how coordinators helped with scheduling across multiple providers, identifying resources, and offering solutions to emerging challenges. This support extended to future planning, including transitions in care and educational needs. The Shared Plan of Care (SPOC), co-developed with families, captured both medical information and personal goals, helping caregivers and patients feel seen and heard. Caregivers valued the SPOC’s flexibility and utility—it was shared with healthcare teams, schools, and informal caregivers, and used in emergencies and Individualized Education Plan (IEP) meetings to advocate for their child’s needs.

Theme 3: Care across the lifespan

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

Families appreciated that the care coordinators were personable, kind, and efficient. For many, the care coordinator acted as an emotional support system. 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. 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

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 rates of pediatrics care coordination continue to fall [26]. Many families of those with CMC experience financial hardships and need supplementary insurance to cover medical costs [40]. 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 [41]. 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 car 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 [42, 43] resulting in discontinuity of care. Care coordinators can fill in the gaps [44]. 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 echoes the findings of others. The care coordinator helped plan 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, 34], 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. Because participants self-selected into the study from a single program cohort, the sample may not fully represent the broader caregiver population, which limits the transferability of findings. 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. The interview guide was developed specifically for this evaluation; while it was based on an established, it did not undergo a formal process or extensive iterative behavioral coding during its development phase. Formal pilot testing of the final interview guide with members of the target population was not conducted prior to data collection. Although the flexible nature of semi-structured interviewing allowed for real-time clarification and prompt adjustments during sessions, initial interviews may have functioned as a continuous baseline for guide refinement, potentially affecting the delivery consistency of early sessions. The qualitative nature of individual interviews leaves open the possibility that subtle investigator biases or the interviewer’s distinct professional identity could have subtly influenced participant framing or data interpretation. Finally, our sample size (n = 13) and self-selected purposive sampling strategy may limit the transferability of the findings. Because participants volunteered in response to email invitations, families facing severe care workloads, language barriers, or acute medical crises may have been less likely to respond, potentially underrepresenting the most vulnerable segments of the caregiving cohort.

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

Authors' contributions

JG contributed to the data collection, data analysis, and manuscript edits. EM data collection, data analysis, and manuscript production. MP conceptualized the project, contributed to data collection and analysis, and contributed to manuscript production. MC conceptualized the project, provided oversight for data collection and data analysis, and contributed to manuscript production.

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 Sect.  9817 of the American Rescue Plan Act (ARPA) as Home and Community Based Services (HCBS) Stabilization Grants, CFDA # 93.778 Medical Assistance Program.

Data availability

Data not available.

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.

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.

Competing interests

The authors declare no competing interests.