2.4.1 2023 Cerebral Palsy Foundation Early CP Health Summit (Clinicians and Caregivers)

This implementation-focused summit focused on birth-3 years brings together more than 300 professionals across disciplines including neonatology, neurology, paediatrics, physical and occupational therapy, early intervention and nursing with the goal of accelerating translation of early detection and intervention knowledge into practice. In 2023, the Summit launched a ‘parent track’ to connect and empower caregivers to support and advocate for their young child with CP.

2.4.2 2023 Research Symposium on the State of CP Research (Researchers)

This regional research-focused conference brought together more than 60 researchers, including US National Institutes of Health (NIH) funded researchers and clinician-scientists, university administrators, trainees and students, and clinician-scientists with an interest in advancing CP research in Georgia, USA.

2.4.3 Early Detection of CP Trainings (Clinicians)

Clinicians from Georgia's five regional high-risk infant follow-up clinics received intensive in-person training on assessments for early detection of CP through a series of site-specific workshops colead by the senior author (N.L.M.).

2.4.4 CP Summer CAMP Programme (Trainees)

Three sessions of this week-long, intensive, therapy-guided CAMP programme for young children (12–36 months) were held between June and July 2023. The CAMP was staffed by students and allied health trainees working with a trained clinical and research team.

2.7.1 Quantitative (Clinician)

A project-designed survey was administered to clinicians to minimise time burden associated with participation (see Appendix A). Survey data were collected and managed using REDCap (Research Electronic Data Capture), a secure, web-based software platform [22, 23] hosted at Emory University. Surveys took about 10 min to complete. Basic demographics were collected. Respondents used a sliding scale from 0 (not at all) to 100 (very much so) to rate the importance of facilitators and barriers in two areas: CP researcher-clinician collaborations and sustaining CP-focused trainee development pathways.

2.7.2 Qualitative (Caregiver, Researcher, Trainee and Programme Administrator)

Focus groups. After a welcome and overview of the required democratic processes necessary for participation, a host was selected at each table to facilitate discussion, encourage all voices to be heard and act as lead table representative during whole group discussion [24]. Discussion took place over a series of ‘rounds’ guided by prompts eliciting discussion of barriers and facilitators to engagement (Tables S2–S4). All participants were encouraged to share insights and collaboratively note vital concepts and emerging connections [19].

Discussion rounds in the Café were followed by ‘whole-group harvesting’ [19] where each table shared their responses with the group at large. The two facilitators employed the evaluation tool of graphic recording [25] to visibly compile data from the whole group discussion, facilitate consensus building within the larger group and provide the opportunity for additional discussion, clarification and comments. This process allowed for built-in member checking to ensure valid responses from all participants [26], via a member check of synthesised data [27] using a process of real-time member checking to increase data validity [28]. Facilitators also made field notes used in conjunction with graphic recordings to clarify ambiguous responses. Responses from graphic recordings and field notes were transcribed into Excel, breaking them down by row into individual responses and checked for accuracy by authors (M.M.M., P.S.R.). Response clarifications were noted within brackets in the transcription.

Structured interviews (programme administrators). In total, 20–30-min interviews were conducted via Zoom Workplace with programme administrators representing allied health training programmes (n = 8) of trainees through a range of public and private institutions in Georgia, USA, including Georgia Southern Exercise Science, Brenau Occupational Therapy, Georgia State Occupational Therapy, Physical Therapy, Public Health, and Social Work, University of Georgia Music Therapy and University of West Georgia Speech Language Pathology. Specific questions guided discussions and follow-up questions clarified and expanded responses (Table S4). Audio transcriptions from cloud recordings were reviewed by a project team member for transcription accuracy. Responses were parsed according to the target question addressed and then added to Excel for coding.

2.8.1 Quantitative

Quantitative data from surveys were analysed using SPSS version 29 [29]. Descriptive statistics are reported as frequencies, means and standard deviations. Medians and ranges are presented for variables where the data distribution is skewed.

2.8.2 Qualitative

We used an inductive reasoning approach [30] and constant comparison to explore key concepts emerging from the responses [31]. Following an individual review of the data, team members (M.M.M., P.S.R., W.K., and K.S.) worked in pairs to identify initial recurring themes and associated subthemes for each partner group. This classification was done by focusing on the meaning expressed (i.e., ‘What is this statement about?’). Responses were then sorted and summarised for each group.

To ensure intra-rater reliability of initial thematic coding, responses were coded a second time at a later date. All coding disagreements were discussed and resolved. In cases where agreement was below 80% [32, 33], original responses and code categories were revisited and further clarified or collapsed. Reliability testing was then repeated to ensure Cohen's Kappa was > 0.80 for all partner groups [32].

Once reliability was established within partner groups, team members (M.M.M., P.S.R., and K.S.) reviewed themes and subthemes across groups to arrive at a comprehensive set of themes and subthemes reflective of all partner perspectives [34]. When necessary, adjustments were made to theme labels to ensure consistent terminology without compromising the original meaning of the category. To ensure robustness and validity of the final themes, responses from partner groups were cross-verified and referenced against source data. Once theme triangulation was complete, intra-rater reliability was repeated for theme agreement (% agreement = 91.6%, Cohen's Kappa = 0.91) and subtheme agreement (% agreement = 94.04%, Cohen's Kappas ≥ 93%). Team members (M.M.M., P.S.R., and K.S.) then examined discrepancies and synergies in subthemes among partner groups.

Discrepancies were noted when a similar theme/subtheme was expressed differently by one or more groups. Synergies occurred when groups were matched in their characterisation of a theme/subtheme. Within subthemes, responses could refer to a barrier, defined as a real or potential obstacle to CP research (e.g., a lack of something) or a facilitator, including an existing resource or construct that made it easier for CP research to flourish (e.g., the presence of something). Facilitators could also include improvements to overcome common barriers frequently observed in CP research. This dual role of barriers and potential facilitators is consistent with findings of a recent review of participation in clinical trials by people with disabilities [35].

3.1.1 Synergies

Responses across partner groups converged on three important aspects of involvement in CP research: awareness of opportunities to participate in research (caregivers)/CP-focused training experiences (trainees, clinicians), logistical barriers to access opportunities (e.g., cost, timing and distance) and attitudes about CP research.

3.1.2 Discrepancies

A fourth subtheme, informational needs to participate in research, also emerged across groups. However, differences emerged in how groups discussed these needs. Researcher responses focused on general informational needs, such as CP-specific knowledge/education, broad benefits of research participation and ‘parent education.’ Caregiver responses, however, focused on specific informational needs, such as the direct benefit to their child/family, the qualifications of the team conducting the research, their child's individual results and/or development and how they can quickly access results from the study they participated in. At the same time, informational needs of trainees and programme administrators reflected specialty area-specific information and educational needs (e.g., ‘ensuring students understand the scientific method…’).

Similar to trainees, clinician respondents rated informational needs, including short summaries of completed research studies and descriptions of active studies as somewhat to very helpful and lack of information about the benefits of research for clinical care as a barrier. And yet, as a whole, they perceive summary updates (Med = 26, 0–100) as lacking at their institutions (Table 6).

3.2.1 Synergies

Many subthemes within connection reflected synergistic assessment of formal and informal CP partner relationships among trainees and professionals (rather than lived experience partners). For example, the need for interdisciplinary, professional and institutional collaborations was described by researchers, trainees and programme administrators and reflects the importance these partner groups place on building pathways to increase connections and partnerships among CP-professionals. Although variable, clinicians also rated educational initiatives as very helpful (Med = 84, 0–100; Table 6) to facilitate researcher-clinician collaborations and the lack of such initiatives as a barrier (Med = 61, 0–100; Table 6).

3.2.2 Discrepancies

Two subthemes within connection, however, reflect discrepancies in how connection is envisioned among partner groups: CP community connection and pathways for bidirectional communication among partners. From a researcher's perspective, CP community connection broadly encompassed researcher-initiated interactions with the CP community intended to communicate with families, connect parents together and ‘increase…[non-CP community's] exposure to individuals with CP.’ Caregiver responses were more specific in considering research participation as a means to connect to the CP community, especially other families that have participated in similar studies (e.g., ‘other parents are the best resources’).

The second subtheme where discrepancies were noted, pathways for bidirectional communication, was articulated by researchers as partnering with patients/families in all stages of the research process. None of the caregivers' responses were coded with this subtheme despite being questioned similarly. Responses from trainee and programme administrators did express the need to increase connections within and among partner groups noting a ‘lack of infrastructure/pathways…to continue communication and involvement in CP Community and research.’

For their part, clinicians rated opportunities to be included as part of the research team (Med = 82, 21–100) and involvement in study development as somewhat or very helpful (Med = 76, 34–100; Table 6). Although variable, as a whole, they perceive inclusion on research teams (Med = 50, 0–100) and involvement in study development (Med = 50, 0–100) to be ‘implemented’ but leaving room for improvement (Table 6).

3.3.1 Synergies

Researcher and lived experience partner responses acknowledged participant experience during research as an important consideration for participation. Participant experiences included the overall satisfaction and trust in the research team, accessible settings, welcoming environment, convenient timing and location, and direct and clear communication.

3.3.2 Discrepancies

Researcher responses articulated a subtheme of ethical research and equitable representation in research that was not directly articulated by the other partner groups. In their responses within this subtheme, researchers acknowledged (1) historical and systemic barriers, socio-economic barriers and other disparities that affect trust in research or the ability of research to meet the needs of the community (e.g., ‘equipment that perpetuates disparities (e.g., EEG caps that require wetting hair [for a study in a predominantly Black/African American community])’, ‘[find ways to include people who are nonspeaking]’, ‘protect people in registries from those who would use them or their data in less beneficial ways’) and (2) the need for more pathways for people with CP to become professionals in the field of CP (e.g., ‘more people with CP should do research’).

3.4.1 Synergies

Responses from researchers, trainees, programme administrators and clinicians converge on the importance of providing financial support for trainee and clinician effort in research. For example, clinicians rated trainee financial support as somewhat of a barrier (lack of) and very much a facilitator (help with) to strong trainee pathways for entering or remaining in the field of CP.

In reference to themselves, clinicians rated ‘compensate clinical effort on research studies’ as very helpful for facilitating research-clinician collaborations (Med = 81, 30–100; Table 6), and lack of protected time for research activities as very much a barrier (Med = 85, 0–100; Table 6) and lack of compensation somewhat a barrier (Med = 75, 0–100; Table 6). And yet, when asked about the perceived implementation of this practice, respondent ratings indicated that compensating clinicians for their time engaged in research studies was not very well implemented (Med = 25, 0–100; Table 6).

3.4.2 Discrepancies

Researcher responses articulated the importance of providing compensation to families engaged in research to offset costs associated with participation as part of the research process (e.g., lived experience advisory board participation) and study participation. Although caregivers did not specifically express responses aligned with this subtheme, they acknowledged financial considerations for participation. However, their responses were best classified under the logistics subtheme of Involvement (e.g., ‘length, frequency, location, cost [of participating]’), as one of several factors contributing to participation decisions rather than a factor that offsets participation.

4.1.1 Align Purpose

To leverage synergies and reconcile differences, CP partner groups must work together towards a common purpose. Multiple studies have already identified shared CP research priorities [12, 38-40]. Although not the only factor contributing to effective team outcomes [41], shared purpose in interprofessional healthcare teams improves team effectiveness [42, 43], ability to identify and resolve problems among team members [44], innovation [41, 43] and high-quality care for patients [45].

In the absence of shared purpose, team members may experience a sense of isolation—especially minority team members [41]. Feelings of isolation and loneliness are associated with a lack of social connection [46-48]. Fostering shared purpose and nurturing social connections may be especially important for encouraging research participation—especially among lived experience research partners, who may represent a minority perspective on research teams dominated by basic science researchers and clinician-scientists.

Researchers can make intentional and systematic efforts to build shared purpose by seeking to understand healthcare needs and associated research priorities of lived experience partners and aligning research programmes with shared priorities that bring direct and tangible benefits. Community-based participatory research (CBPR) approaches, including PAR like those used in this initiative, are a strategy-rich source of community-accessible methods, including toolkits, to understand research partner perspectives on health needs and research priorities [49].

4.1.2 Nurture Social Connection

Caregivers of a young child with CP, like parents of children with other disabilities, describe feelings of stress, depression and reduced social support [50, 51]. They also emphasise the value of connection to providers and to other parents [52]. In the present initiative, the value of fostering parent-to-parent interactions was exemplified in the caregiver statement, ‘Participation in research studies is a shared experience, so we [participants] should connect.’

In addition, adults with CP—especially in those who use alternative communication technologies—have an elevated risk of loneliness relative to peers without CP [53, 54]. As such, social connection—or its absence—may have implications for how people with lived experience of disability engage in research. Empowering social connections between people with CP or their caregivers via a research study design may enhance the value of research participation.

The need for social connection in research extended to clinicians and trainees, who expressed this need through learning opportunities, professional community connections and interdisciplinary and interinstitutional collaborations. For example, trainees reported that a desire to ‘want to do it [work in the field of CP]/care about it personally/[feel] personally connected]’ was a major determinant of entering and/or staying in the field. Similarly, one trainee programme administrator commented that trainees ‘struggle to see the importance of research and evidence-based practices’ and ‘students are not always interested in paediatric research.’ For their part, clinicians rated connection subthemes, such as learning experiences, inclusion on research teams and involvement in study development, as somewhat-to-very-useful facilitators of research-clinician collaborations that were not consistently being implemented across institutions.

Researchers, who may contact a wide range of lived experience partners throughout their studies, can deploy methods to connect these lived experience partners to each other. Although strict guidelines exist for the protection of human participants in research and private health information, ‘opt-in’ approaches allowing participants control of who, what and how information is shared. This can balance the connection with confidentiality. In addition, partnering with study participants to develop, organise and host social events can provide creative, feasible and accessible opportunities for connection. These events can nurture relationships that build trust in the researcher's ability to listen and respond to lived experience partner needs.

Researchers seeking to address these barriers can partner with trainees and programme administrators to design and promote opportunities for interdisciplinary education and training in clinical research. Programme administrators suggested capstone projects, paediatric residency programmes combining research and clinical experience, long-term projects for students interested in research and internship programmes that incorporate research into designated student hours. Other proposed solutions from trainees included increasing awareness of opportunities through professors, conferences and posts on ‘[their] own social media pages to connect with friends and other students [who do or may be interested in CP].’

4.1.3 Build Trust and Codesign Studies With Research Partners

Distrust of researchers, lack of understanding of the clinical process and fear of risk are some factors that challenge nurturing social connection among research partner groups, and especially lived experience partners [36]. Examples of these issues emerged in researcher responses (e.g., equipment that perpetuates disparities, and historical lack of trust in research, especially among underrepresented minorities). Mindful of factors that contribute to infant developmental risk [55], efforts were made in the present initiative to ensure racially, geographically and socio-economically diverse caregiver participation. However, paediatric research in general has multiple opportunities for improvement.

Additionally, study burden is an often-cited barrier to participation in clinical trials [36]. Consistent with this notion and other studies [56], respondents across all groups perceived that logistical difficulties, including time constraints, transportation and the proximity of studies to participants’ homes, were significant deterrents to participation. In the absence of a compelling reason to participate in research, these barriers are further magnified for families who experience mobility, language, cultural or socio-economic challenges.

At the same time, involving families with a diverse range of needs in all phases of the research process, from planning to debriefing [35, 57], is a critical research step. Child-friendly research sites and teams can make it easier for mothers to participate in trials [57, 58]. Parental input in trial design and study outcomes has recently been successfully implemented in clinical trials for neonates with neural insults [59], whereas family unit and siblings' involvement present new opportunities for engagement.

Establishing shared purpose around the health needs of lived experience partners, and including lived experience partners as equal partners during the planning phase of studies, can foster feelings of appreciation and value. Creative recruitment strategies such as open access screening initiatives, utilisation of patient registries and community outreach efforts enhance accessibility for people with disabilities who are typically difficult to reach [60-62].

Further, clinical trials integrated into healthcare systems provide a potential alternative to traditional approaches [63, 64]. They combine clinical research with routine care delivery [65], thereby reducing barriers to research participation for both lived experience and clinician partners. The proposed research actions described subsequently align well with such a framework.