Established Evidence Results

Intervention Components (click on component to see a list of all articles that use that intervention): Training (Parent/Family), Family-Based Interventions, Patient-Centered Medical Home,

Intervention Description: In collaboration with veteran parents’ focus groups, we created an experienced co-designed care bundle including IFDC mobile application, which together with staff training programme comprised the IFDC programme. Infant outcomes were compared with retrospective controls in a prepost intervention analysis.

Intervention Results: Infants in the IFDC group were discharged earlier: median corrected GA (36+0 (IQR 35+0–38+0) vs 37+1 (IQR 36+3–38+4) weeks; p=0.003), with shorter median LOS (41 (32–63) vs 55 (41–73) days; p=0.022)

Conclusion: This is the first reported study from a UK tertiary neonatal unit demonstrating significant benefits of family integrated care programme. The IFDC programme has significantly reduced LOS, resulted in the earlier achievement of full enteral and suck feeds

Study Design: Implemented the Integrated Family Delivered Care (IFDC) program to a subset of infants while also having a control group. Compared infant outcomes.

Setting: NICU - London

Population of Focus: Families of NICU patients - healthcare providers and professionals working in neonatal intensive care units, as well as parents of preterm infants who are receiving care in these units.

Sample Size: 89 families - 89 infants who were admitted to the neonatal units of the participating healthcare facility. However, for the purpose of the outcome analysis, infants were included if they were less than 34 weeks gestational age, admitted for at least 14 days, and received the entire period of care in the neonatal units. This resulted in a sample size of 37 infants .

Age Range: Parents of infants

Intervention Components (click on component to see a list of all articles that use that intervention): Training (Parent/Family), Family-Based Interventions, Patient-Centered Medical Home,

Intervention Description: Created a Parent Participation Improvement Program. Then offered it to the study group while maintaining a control group

Intervention Results: A Mann-Whitney U test was performed to compare parents’ partnership scores between the intervention and control groups. The difference between the partnership scores of the two groups was significant (MannWhitney U = 99.50, p<.001).

Conclusion: The aim of this study was to develop the Parent Participation Improvement Program for parents in neonatal care and to evaluate its effects. This program was proven effective for increasing attachment and partnership in both mothers and fathers. The program, developed in accordance with King’s goal attainment theory, will serve as a useful reference in developing standardized guidelines for promoting parent participation in neonatal care, and it is expected to bridge the gap between theory and practice by applying family-centered care to the practical base of neonatal care.

Study Design: This study consisted of two phases. The first phase was developing the Parent Participation Improvement Program. The second phase, a parallel, 2-group randomized controlled trial with a prospective pretest-posttest experimental design, was conducted to evaluate the program’s effectiveness.

Setting: NICU South Korea - neonatal intensive care unit (NICU). The Parent Participation Improvement Program was implemented in this NICU to promote parent participation in clinical activities and evaluate its effects on parents' partnerships with nurses, attachment to infants, and infants' body weight

Population of Focus: Parent dyads of Premature infants - parents of infants in neonatal intensive care units, healthcare professionals working in neonatal care, and researchers interested in family-centered care and parent participation in clinical activities.

Sample Size: 124 parents - The sample size for the study consisted of 66 premature infants and their 132 parents (66 mothers and 66 fathers) . The infants were randomly assigned to either the intervention group or the control group, with 62 infants and their 124 parents included in the final analysis . The sample size was calculated to ensure the study had sufficient power to detect the estimated effect size .

Age Range: parents of infants - the parents showed that their mean age was 34.6 years in the intervention group and 34.97 years in the control group . The infants included in the study were premature, with a mean gestational age of 28.42 weeks in the intervention group and 29.75 weeks in the control group .

Intervention Components (click on component to see a list of all articles that use that intervention): Visual Display (Hospital), Patient-Centered Medical Home, Quality Improvement, Provider Tools

Intervention Description: After the introduction of the “A Bit About Me” boards, staff and parents were surveyed again over the course of 3 weeks. Items from the preintervention questionnaire were used after the intervention to measure for changes across the parameters of interest.

Intervention Results: There was a significant increase in whether nurses felt they knew what comforts their patients and their patients’ favorite toy (P < .005). A significant improvement in whether doctors felt they knew their patients well (P < .5) and could recognize them outside the hospital (P < .005) was also observed Table 2). Moreover, the perception of the PICU as a welcoming environment improved (P < .05); following our intervention, both doctors and parents felt that nurses know their patients well (P < .05). Improvements in all other questionnaire items were also noted; however, these did not demonstrate statistical significance (Table 3). These results were further supported by improved parents’ views regarding whether HCPs knew what comforts their child (pre, 77%; post, 100%) (Figure 3A and B), their favorite toy (pre, 45%; post, 100%) (Figure 3C and D), and if they could recognize their child outside the hospital (pre, 66%; post, 100%) (Figure 3E and F).

Conclusion: Personalized bedside boards significantly improved how well HCPs knew their patients across various elements. Patient-centered care and, in turn, patient safety in PICUs can be promoted by using personalized bedside boards containing nonmedical information to help HCPs understand their patients’ individual needs and tailor their treatment.

Study Design: An unpaired, two-tailed Student’s t-test was used to analyze and compare the pre- and postintervention results.

Setting: PICU in London - 13-bed Pediatric Intensive Care Unit (PICU) of St. Mary’s Hospital, London, United Kingdom

Population of Focus: families of children in PICU - healthcare professionals (doctors, nurses, physiotherapists, and pharmacists) working in the PICU, as well as the parents of children in the PICU

Sample Size: 36 - combination of parents, doctors, nurses, others - The project collected 38 questionnaires to obtain baseline data, while 36 questionnaires were completed after the introduction of the personalized bedside boards .

Age Range: parents of children in the PICU

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

Intervention Description: This youth panel consists of adolescents with a chronic condition, who contributed with ideas and suggestions to several projects aiming to improve social engagement in health care. All representative users were involved in all phases of the design process—from writing the project plan to the final version of the game.

Intervention Results: In total, 15 adolescents (mean age: 15.0 years, range 12–18 years, 60% female) participated in four focus groups and four interviews (Table 1). Ten major themes for adolescents regarding their illness, treatment and hospital care were identified: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers (Table 2). The opinion of 13 adolescents (mean age: 15.5 years, range: 13–18 years, 61.5% female, Table 1) was asked about the draft version (Figure 2) of the engagement game in three focus groups and five interviews. Overall, the adolescents were positive about the game as it gave them the opportunity to get involved and it helped them to express their views. The pilot version (Figure 2) of the game was tested for usability by four patients (mean age: 14.5 years, range: 13–16 years, 50% female; Table 1) in clinical practice. At the end of the workshop, the adolescents gave their opinion about the engagement game. All adolescents were enthusiastic about the game and enjoyed giving their opinion.

Conclusion: In conclusion, we developed a patient engagement game called All Voices Count, working together with all stakeholders. This game lowers the barrier to include the voice of adolescents in decision‐making about hospital care, research and policy.

Study Design: A user‐centred design, as described in the literature by Gulliksen et al.,25 was used. Key principles of an user‐centred design include user‐focused and active user involvement throughout the entire development process. These principles were guaranteed by actively involving all representative users, including adolescents with a chronic condition, clinicians, researchers, the Patient Alliance for Rare and Genetic Diseases (VSOP), the Dutch Childhood Cancer Organization (VKN) and a youth panel of Fonds NutsOhra (FNO).

Setting: e Emma Children's Hospital Amsterdam UMC

Population of Focus: Adolescents with chronic conditions - adolescents aged 12-18 years with a chronic condition who were under treatment at the Emma Children's Hospital Amsterdam UMC in the Netherlands.

Sample Size: 23 adolescents

Age Range: aged 12-18 years