A 0–100 sliding scale, chosen because the continuous slider provided finer resolution than a 5- or 7-point Likert scale, captured subtle distinctions in perceived importance and implementation barriers, and mitigated central-tendency and ceiling effects. Using the sliding scale from 0 (not at all) to 100 (very much so), clinicians rated the importance of specific clinical objectives to creating and maintaining a high-quality CP clinical program. These objectives (see Table 2) were based upon an educational bundle developed for the CPF Early Detection of CP Network and existing guidelines for CP care (8–11, 23). They also rated barriers and facilitators to implementing these clinical objectives using the same sliding scale. Caregivers used the same scale to rate the importance of options for their child’s medical care and degree of difficulty accessing medical care. They were also asked to rate their preference for community opportunities, educational topics, and types of therapy services.

Both clinician and caregiver surveys were administered via REDCap, a secure, web-based platform for data collection (24, 25). Survey questions and response choices are included in Supplementary Tables S1, S2 for caregivers and clinicians, respectively. Each survey version took 5–10 min to complete.

Caregivers participated in World Café style focus groups on the first afternoon of the Health Summit. After a welcome and introduction, caregivers were prompted to discuss challenges in obtaining high quality health care, therapy, and equipment. Two facilitators from the research team who were not involved in any clinical care were present at each table to assist with graphical recording of responses. Following the small group discussion, co-authors (MMM, PSR) led a whole group discussion to “harvest” (26) responses and increase data validity through real-time member-checking of synthesized data (27, 28). Responses on the graphical recordings were transcribed into Excel and checked for accuracy. Clarifications were noted in brackets within the transcriptions.

Ratings of select medical care options indicate that caregivers perceive as very important options such as in-home therapy and/or care services, easy access to CP-specialized medical providers, information about treatment/intervention options and their child’s developmental trajectory, and care coordinator support to help navigate service options (all Mdn = 100; 10th percentile values ranged from 50 to 85, all 90th percentile values = 100). At the same time, they rated telehealth options as only somewhat important (Mdn = 71, IPR 0–100).

Caregivers rated medical appointments with primary care providers as somewhat easy (Mdn = 27, IPR 0–100). In contrast, “appointments with specialists” was rated somewhat hard (Mdn = 70, IPR 28–100). Access to other medical care needs, such as medications, equipment, and therapy were all rated as hard (Mdns = 50, IPRs 0–100).

To identify caregivers’ preferred options for therapy services, we asked them to rate each one as if distance, availability, and cost were not barriers. Caregiver primary preferences were for individualized in-home options, followed by in-clinic options and a group setting that included children with similar issues (Table 3). The two options that were least preferred were telehealth options, as both weekly and intensive options were rated as somewhat not preferred (Mdn = 50, IPR 0–66 and Mdn = 59, IPR 0–92, respectively).

When asked to rate the importance of community-based experiences, caregivers rated as very important opportunities for social connection (Table 3). Caregivers deemed both staying informed about the latest CP care and enabling their child to connect with peers as extremely important (Mdn = 100; IPRs 50–100 for each item).

When caregivers rated their interest in learning about a range of CP-related topics (Table 4), almost all (95%) of caregivers endorsed wanting to know more about motor-focused interventions. More than 80% of caregivers valued learning more about environmental supports to aid in development, latest scientific developments relevant to CP care, and CP-specific family and social supports.

There was strong agreement among clinicians that clinical objectives, such as connecting families with intervention services, family-centered approaches to care, addressing socio-economic barriers to family participation in care, and access to interdisciplinary medical teams are important for high-quality CP clinical programs (all Mdns = 100, IPRs 72–100).

At the same time, the degree to which clinicians perceive that these objectives are implemented was variable (Mdns = 56–90, IPRs = variable). Of the clinical objectives, “addressing psychological concerns for families” was the less consistently implemented (Mdn = 56, IPR 21–91) followed by “access to support services across the lifespan” (Mdn = 60, IPR 20–97) and efforts to address socio-economic resources issues for families” (Mdn = 62, IPR 31–94). At the same time, clinical objectives that were being more consistently implemented included patient-centered approaches to care (Mdn = 88, IPR 58–100), connecting families to intervention services (Mdn = 90, IPR 50–100), and use of evidence-based care practices (Mdn = 82, IPR 50–100).

Ratings indicated that clinicians perceived the lack of the following to be “somewhat” barriers: clinician time (Mdn = 77, IPR 50–100), insurance reimbursement (Mdn = 75, IPR 25–100), readily identifiable resources for families (Mdn = 65, IPR 25–89), opportunities to learn evidence-based research (Mdn = 61, IPR 19–92), and established systematic approaches to care (Mdn = 61, IPR 15–100).

Access-related responses described the ability of a patient/family to enter the clinical system (e.g., see a qualified health provider within a reasonable time). Caregiver responses identified logistical factors, such as distance to provider, cost, and wait time as barriers to existing clinical care options. At the same time, they also reported gaps in resources (e.g., “finding nursing care is impossible” and “hard to find primary care physician who could tend to child’s needs with multiple concerns”).

Quality-related responses described difficulty or dissatisfaction with the provision of services once in the system due to a lack of assistance or advice from a provider or patient-facing organization (e.g., clinic, hospital, government program). Within this theme, caregiver responses reflected dissatisfaction with available service options and organizational barriers within the care process (e.g., “getting providers to respond for care/schedule appointment w/o being redirected” and “identification of appropriate equipment but no response – ‘battle’ to actually obtain equipment”). Caregivers also reported challenges related to perceived quality of care received [e.g., “some specialists quick to diagnose w/o assessing baby’s state (hungry/tired)”], perceived lack of care for child (e.g., “[we experienced] delay in getting necessary equipment, [it was] not a priority to people in charge.”), and inter-specialty communication (e.g., “disconnect b/w developmental therapist and some programs, streamlining could be better”).

The third theme reflected in caregiver responses described feelings about care and available services. Reponses within this theme reflected barriers preventing patient/families from feeling or being successful in the care of their child due to real or perceived lack of power, authority, or influence over the care priorities and plan for their child. These feelings of disempowerment were reflected in caregiver-identified needs for centralized coaching/guidance through critical transitions and recognition of social, emotional, and logistical factors faced by caregivers. Caregivers also reported the absence of or limited partnering with providers around care priorities (i.e., bidirectional communication ensuring parent/family perspectives are understood; “more respect [needed] for questioning parents, [parents who question are] labeled ‘non-compliant’ when seeking other options.” and “docs telling me things I already know.”).

Clinicians were asked to rate barriers to patient/families engaging in clinical care (Table 6). The top barriers identified were social determinant of health-related (Mdn = 81, IPR 50–10); awareness (Mdn = 76, IPR 49–100) of and access (Mdn = 50–100) to clinic/clinician services; insurance coverage of services (Mdn = 75, IPR 20–100); and lack of knowledge of CP by caregivers (Mdn = 70, IPR 50–99). Perceived barriers also included lack of trust in the medical system (Mdn = 60, IPR 30–96), health literacy (Mdn = 70, IPR 39–95), and limited understanding of importance of clinical care/services (Mdn = 68.5, IPR 35–90).

Consistent with other studies of parent perceptions of CP care, our participants reported the value and importance of caregiver-providers collaboration in establishing care plans and decision making (32, 33). Caregiver empowerment, as both a process and outcome, was also positively associated with child cognitive and motor outcomes for children under 3 years with CP (34). Combined with clinician support, it can also result in effective parent-delivered interventions across childhood (32, 35). In Table 7, we propose potential logistical and psychosocial approaches to addressing barriers and accelerating caregiver empowerment.

Responses from provider participants were consistent with those reported by others (36) and highlight the complexity of implementing and sustaining high-quality CP care. The importance providers placed on clinical objectives aligns with the 2022 report from the American Academy of Pediatrics (AAP) and American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) guidelines and resources for strengthening access high-quality CP care (37). Among key guidelines were to educate and support pediatricians in early identification of CP as well as “increasing communication and collaboration with the child’s resource providers” and “educating caregivers” (p. 6). However, provider responses in the current study indicated opportunities to strengthen and accelerate implementation of these guidelines and clinical objectives in CP programs (Table 7). By deriving logistical and psychosocial approaches to addressing convergent themes, it is possible to derive an action plan for systems change, and test whether it is feasible at a state level. Examples of systems change in partnership with the state include Department of Health in Georgia and various healthcare organizations in the community (e.q., Early intervention providers, medical and allied health institutions).

The dual strategy of empowering caregivers alongside building provider capacity and confidence could move the entire system forward. Addressing access barriers, including those identified in this study, begins with caregivers and patients at the center of framework and works outward to drive change (Figure 3). It leads to the promise of increased caregiver capacity reserve, which can then be directed toward promoting improved individual-level outcomes and the potential for advocacy. Indeed, patient and parent-led foundations have been at the heart of early identification, intervention, research, and advocacy initiatives for neurodevelopmental disabilities such as fragile X syndrome (38, 39) and autism spectrum disorder (40, 41). And yet, CP is behind despite being most common lifetime physical disability.

At policy and health systems levels, alleviating provider perceived barriers to clinic implementation high-quality CP services and enhancing provider empowerment to provide interdisciplinary, evidence-based care that addresses patient/family needs begins to work from the outside of the system inward. Obtaining metrics and outcomes that matter at all levels of the ecosystem will also ensure progress toward the goal of improving the health and wellbeing of people with CP across the lifespan.