Established Evidence Results

Intervention Components (click on component to see a list of all articles that use that intervention): Patient-Centered Medical Home, Quality Improvement/Practice-Wide Intervention, Provider Training/Education, Clinic Reorganization

Intervention Description: One parent or other legal guardian per family completed surveys near the time of discharge from the NICU and when their child reached 12, 18 and 24 months corrected age. Parents completed the surveys online or by telephone interview with a trained research assistant. Parents could complete surveys in English or Spanish.

Intervention Results: Three main themes were identified: (1) communicate information effectively, (2) understand and validate our experience and (3) provide support and resources

Conclusion: Data from this multicenter sample of parents provide actionable advice to healthcare teams caring for children and families impacted by neonatal seizures. Parents offered advice in three key themes: (1) communicating effectively, (2) understanding and validating parents’ experiences and (3) providing support and resources (Figure 1). Domains of advice persisted over time, suggesting that these concepts remain salient to parents long after the initial hospitalization. Clinicians, educators, and researchers can leverage these insights to inform interventions.(22) The majority of parents identified ways in which the healthcare team could more effectively communicate amidst crises. Many of these suggestions are consistent with existing literature; parents value when communication is transparent, accessible, and coordinated.(11, 15, 23) When predicting the potential for future impairment, parents appreciated when clinicians provided balanced information that included a clear spectrum of neurodevelopmental outcomes. Parent emphasis on providing balanced information, including positive information, may seem at odds with concurrent requests for transparency. While this incongruence could result from sample heterogeneity, it is also consistent with existing data from parents of premature infants suggesting that parents are able to process grim prognostic information concurrently with maintaining hope for an alternative outcome. (24) Taken together, these findings suggest that clinicians should not avoid disclosure of negative prognostic information due to concerns about removing hope. When appropriate, clinicians should disclose not only information about expected impairments, but also information about expected function. Framing the discussion as the best, worst, and most likely outcomes is one evidence-based strategy to discuss a range of potential outcomes. (15, 25) Prognostic uncertainty is a common feature of care for children with neurologic undermine a clinician’s ability to sustain these ideals.(34, 35) Interventions to enhance parent support must also address provider well-being.(36) Parent responses expand on the existing literature and comments shared by this cohort at discharge, which emphasize the importance of parent involvement in clinical care.(12, 13, 37) Our findings underscore the value of supporting and encouraging parents to safely hold their child despite critical illness at every opportunity, including during therapeutic hypothermia.(38) Finally, parents highlighted the need for increased support and access to resources. Data from this cohort and others highlight an urgent need to screen for and address parent mental health symptoms.(2) Parents also desired access to training and resources that extended beyond education associated with seizures and seizure treatment, including helping families navigate the healthcare system and connect with peer support. Parents in this study described the potential benefits of having access to sleeping options, financial resources, and psychological counselling. These findings highlight that interventions to improve parent well-being should incorporate a broad range of psychosocial needs outside of typical medical management.(3, 12)These findings should be considered in the context of this study’s strengths and limitations. Although the sample was large and geographically diverse, only approximately one-third of parents completed the optional open-ended response questions to offer advice to the healthcare team. Because the etiologies of neonatal seizures are heterogeneous, parent responses are likely informed by their infant’s underlying diagnosis, not the presence of neonatal seizures alone. The phrasing of the survey itself may have decreased responsiveness from parents who had a positive experience with the healthcare team. Questions were presented in a single order, and may have resulted in priming or order bias. Surveys were available exclusively in English and Spanish and cannot be generalized beyond these populations. Our study design aimed for a single parent or caregiver to be enrolled per family; this strategy may have decreased participation by fathers. The paternal perspective is an important focus of future work. Parent demographic data were limited, and we were unable to assess the relationship between themes and parent sociodemographic factors.The results of this contemporary and multicenter study identified modifiable behaviors and family-centered care strategies for clinicians to address the needs of parents caring for children impacted by neonatal seizures. Future work should focus on building structures to reinforce these priorities into healthcare delivery to better support parent well-being. conditions and clinician approaches are variable; parents appreciated when clinicians were honest about this uncertainty.(25, 26) Interventions to improve communication skills have been effective in many disciplines and should be adapted to this context.(27–33) Most parents emphasized the need for clinicians to understand and validate their experiences. Their recommendation was clear – parents appreciated when clinicians showed compassion, empathy, and patience. Clinicians aspire to treat patients and families with empathy and compassion; however, clinician fatigue, moral distress, and burnout may

Study Design: a prospective, observational cohort study

Setting: nine sites of the United States-based Neonatal Seizure Registry - nine sites of the United States-based Neonatal Seizure Registry

Population of Focus: Parent of children who experienced acute sysmptomatic seizures as neonates - healthcare professionals, clinicians, educators, and researchers who provide care for neonates with acute symptomatic seizures and their families .

Sample Size: 310 parents - The study enrolled 310 parents of 305 infants for the research on family-centered care for children impacted by neonatal seizures . Among the 310 parents who completed surveys, 118 (38%) shared advice for clinicians .

Age Range: parents of infants - The inclusion criteria specified that neonates were considered for inclusion if their seizures were due to an acute symptomatic cause and had onset before 44 weeks postmenstrual age . The study collected data at various time points, including near the time of discharge from the NICU and when the children reached 12, 18, and 24 months corrected age . Therefore, the age range of the children included in the study spanned from the neonatal period up to 24 months corrected age.

Intervention Components (click on component to see a list of all articles that use that intervention): Patient-Centered Medical Home, Quality Improvement/Practice-Wide Intervention, Provider Training/Education, Clinic Reorganization

Intervention Description: Implementation of the WECARE Roadmap to provide the infrastructure for high quality FCC, then implement three routines of PCC - Creating a partnership, Jointly creating care plans, Safeguarding the partnership. Followed by interviews with those involved

Intervention Results: each type of health care professional contributed a narrative summary to the open-ended field in the EMR in the overwhelming majority of their patients, between 92% and 100%. This indicates the healthcare professionals’ success at the first PCC of initiating a partnership with the child/adolescent and family regarding goals, preferences, limitations and capabilities. A high proportion of PCC patients, 86%, had a documented treatment plan.

Conclusion: In summary, this pilot feasibility study indicates that the PCC approach used in Sweden can be successfully transferred to a rehabilitation hospital in Poland and that the application of the WE-CARE Roadmap helped to facilitate the implementation process [1,23]. As a result, professionals, patients and their families expressed favorable perceptions of implementation. They regarded the PCC approach as feasible and endorsed it as beneficial. Future phases of implementation will improve monitoring and feedback and incorporate new enablers into the implementation strategy with improved measurement systems to capture care quality and costs throughout the care continuum.

Study Design: semi-structured interviews were analyzed to determine if and how each of the three core routines in PCC had been implemented and the perceptions of changes compared to usual care from both professionals and patients.

Setting: rehab hospital for children in Poland - rehabilitation hospital in Poland

Population of Focus: Patients in the scoliosis clinic with moderate scoliosis - healthcare professionals at the rehabilitation hospital in Poland, as well as patients and their families receiving care at the hospital

Sample Size: 51 patients - 51 new patients with moderate scoliosis who were treated using the person-centered care approach at the Voivodeship Rehabilitation Hospital for Children in Poland. Additionally, semi-structured interviews were conducted with nine healthcare professionals involved in the pilot study, as well as three patients and their parents receiving care at the hospital , .

Age Range: children - pediatric population

Intervention Components (click on component to see a list of all articles that use that intervention): Patient-Centered Medical Home, Quality Improvement/Practice-Wide Intervention, Provider Training/Education, Clinic Reorganization

Intervention Description: Followed a Team Reorganization Model: Gather data, Brainstorm challenges with stakeholder, brainstorm solutions with stakeholders, implement, follow up & troubleshoot, implement

Intervention Results: clinic efficiency metrics: clinic capacity (i.e., mean number of patients seen per clinic day), mean number of minutes families spent waiting to see providers per clinic day, and mean clinic duration. Using preintervention (2016) data as a baseline to measure change, these data reveal improvements in clinic fficiency.

Conclusion: In light of the importance and recognized advantages of family-centered care, multidisciplinary cleft and craniofacial teams undertaking reorganizations aimed at quality and process-of care improvement should consider a family-centered approach. It is our hope that sharing our own team’s experience in family-centered reorganization will serve as a starting point and path forward for other teams striving for similar improvements. We anticipate other teams will refine our model on the basis of their own needs and experiences.

Study Design: Team Reorganization Model

Setting: cleft and craniofacial center in the Midwest - cleft and craniofacial center in the Midwest, with over 5000 active patients.

Population of Focus: children / families - healthcare professionals and teams involved in cleft and craniofacial care, as well as those interested in implementing family-centered care in multidisciplinary healthcare settings.

Sample Size: 20 families + providers - The sample size for the study was 20 families, representing 21 patients, two of whom were siblings. The participants were selected by team coordinators familiar with the families, with an eye to including a range of patient diagnoses and ages, as well as perceived likelihood of participating actively in the interview.

Age Range: ages 4-14 - the participants included a range of patient diagnoses and ages, and patients were invited to participate in the interviews as appropriate to their age and cognition .

Intervention Components (click on component to see a list of all articles that use that intervention): Patient-Centered Medical Home, Provider Training/Education, Quality Improvement/Practice-Wide Intervention, Clinic Reorganization

Intervention Description: semi-structured interviews with 14 participants. Once a main category/theory had emerged, data collection/analysis continued until no new properties could be added (Cresswell, 2013). It was felt that this point was reached after 12 interviews with 14 participants.

Intervention Results: Conceptual categories are presented including excerpts from the raw data, to make more transparent the process by which they have emerged from and are therefore grounded in the data. These categories are then drawn together in a novel model which illustrates how the power im/balance and the state of the therapeutic relationship might influence how a parent takes up their position in the collaborative partnership.

Conclusion: Conceptual categories are presented including excerpts from the raw data, to make more transparent the process by which they have emerged from and are therefore grounded in the data. These categories are then drawn together in a novel model which illustrates how the power im/balance and the state of the therapeutic relationship might influence how a parent takes up their position in the collaborative partnership.

Study Design: This study employed a constructivist grounded theory (CGT) methodology

Setting: children’s services from a single NHS trust - within a single NHS trust in the UK

Population of Focus: population of parents of children with long-term disabilities - parents of children with long-term disabilities accessing specialist children’s services in the hosting NHS trust

Sample Size: 14 parents

Age Range: parents of children