The Cellie Coping Kit for children with Eosinophilic Esophagitis: Feasibility, acceptability, and preliminary outcomes

Children with eosinophilic esophagitis (EoE) are faced with ongoing treatments that can impact their wellbeing. There are no evidence-based resources that families can implement independently to cope with EoE-related stressors. This study aimed to examine acceptability, feasibility, and preliminary outcomes of the newly developed Cellie Coping Kit for Children with EoE intervention. Forty child-caregiver dyads completed a baseline assessment (T1) and initiated the intervention; 30 (75%) child participants and 33 (82.5%) caregivers were retained to follow-up (T2). Of those who completed the T2 assessment, most reported that the intervention was easy to use (>90%) and would recommend the intervention to others (>90%). The intervention was feasible: >70% used the kit, and most indicated they would use it again (>75%). More than half of families reported learning new information and/or coping strategies. No statistically significant changes were identified in comparing T1 and T2 coping and health-related quality of life. These findings suggest that the Cellie Coping Kit for Children with EoE is a promising intervention in that it was well accepted, feasible, and helped many families learn novel strategies on how to manage EoE challenges. Future research should examine how to strengthen the intervention to achieve longer-term targeted outcomes.

Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child’s health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team’s scope of practice, (2) perceived expectation to “stay strong,” (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team’s ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

Telemedicine and patient satisfaction during the COVID-19 pandemic: A case–control study of outpatient pediatric urology patients

Telemedicine has increased during the coronavirus disease 2019 pandemic. Our objective was to determine if patient satisfaction with telemedicine differed from in-person visits in an academic pediatric urology clinic. Following outpatient telemedicine and in-person pediatric urology visits, the validated NRC Health© Patient Survey was used to assess patient experience. Patient satisfaction was assessed on a 10-point scale with scores of 9–10 considered “satisfied” and 1–8 considered “not satisfied.” Satisfaction scores between telemedicine and in-person groups were compared using McNemar’s test, Wilcoxon signed rank test, and conditional logistic regression. Fifty-one patients had urology telemedicine visits during April–August 2020 and completed the NRC Health© Patient Survey. Propensity score matching was used to identify 102 in-person controls between January 2019 and March 2020. Ninety-two percent of telemedicine patients were satisfied compared to 87% of in-person patients (OR 1.7 95% CI [0.53–5.6]). Regression analysis adjusting for matching variables demonstrated that patient satisfaction was higher for telemedicine compared to in-person visits but was not statistically significant (OR 1.5 95% CI [0.43–5.6]). Patient satisfaction with telemedicine was similar to in-person visits in the pediatric urology clinic. Reduced waiting time and convenience associated with telemedicine visits provide an opportunity for telemedicine as a useful modality for pediatric urology.

Home environmental change for child injury prevention in Nepal: A qualitative study

In Nepal, unintentional home injury is a leading reason for death and disability among pre-school children. However, there is a lack of evidence to inform culturally appropriate interventions to reduce home injuries. This study explored the potential for home environmental change at a community level to prevent unintentional home injury in children and identified the barriers to, and facilitators of, such changes. Focus groups were conducted in the Nepali language with mothers, fathers, teachers, school students and community health volunteers in rural areas of Makwanpur district in Nepal. The discussions were audio-recorded, transcribed, translated into English and analysed thematically. NVivo software was used to support coding and identification of themes. Five focus groups, involving forty-seven participants, were completed leading to the development of four themes. Overall, the findings highlight that community people perceive injuries to be a normal part of childhood and, therefore, few prevention measures were considered. Parents were, however, able to identify ways to change their environment that made it safer. Changes included removing hazards or adding safety equipment, adapting the home or restricting access to potential hazards. Barriers to implementation included limited awareness about injury hazards and risk management, poor quality housing and financial constraint. Facilitators included raising community awareness, acquiring resources and financial support and involving the family and community. Development of interventions to prevent injuries at home in pre-school children should reflect local context and culture; this is best achieved through engagement with parents.

Vaccination programs for children aged up to 18 years in Europe, 2020

Although all European countries have vaccination policies for children, there are no comprehensive studies of pediatric vaccination programs in Europe. We studied vaccination programs for children in Europe. Vaccinations against diphtheria, tetanus, pertussis, poliomyelitis, Haemophilus influenzae type b, hepatitis B, measles, mumps, rubella, and influenza existed in 42 countries, against human papilloma virus in 41 countries, and against pneumococcus in 40 countries. In addition, the following vaccinations existed: against tuberculosis (35 countries), hepatitis A (33), meningococcus A, C, W, Y (30), rotavirus and varicella (28 countries each), meningococcus B (24), tick-born encephalitis (22), and meningococcus C (16). Mandatory vaccinations are implemented in 21 countries, mainly against diphtheria, tetanus, pertussis, poliomyelitis, H. influenzae type b, hepatitis B, measles, mumps, rubella, tuberculosis, and pneumococcus. There are significant differences among pediatric vaccination programs in Europe regarding number, schedules, indications, and regulatory frame (recommended or mandatory vaccinations). A consensus-based vaccination program for all children is needed.

Siblings of children with chronic disorders: Family and relational factors as predictors of mental health

Siblings of children with chronic disorders are at increased risk of mental health problems. Predictors of siblings’ mental health require further study to identify children in need of interventions and to design effective intervention programs. Siblings of children with chronic disorders ( n = 107; M age = 11.5 years; SD = 2.1, 54.6% girls) and their parents ( n = 199; 50.3% mothers) were included in a survey study. Siblings and parents completed questionnaires on mental health. Siblings completed questionnaires on parent–child communication, relationships with parents, and an adjustment measure on the sibling situation. Multiple linear regression analyses were applied to identify predictors of siblings’ mental health. Sibling-reported relationship with parents was a significant predictor of sibling mental health reported by siblings, fathers, and mothers ( R 2 = 0.26 - R 2 = 0.46). Siblings’ adjustment was significantly associated with fathers’ report of siblings’ mental health ( r = .36), but not mothers’ report ( r = .17). Siblings’ relationships ( d = 0.26) and communication ( d = 0.33) with mothers were significantly better than with fathers. We conclude that the sibling–parent relationship is a significant factor in identifying siblings at risk and that family-based intervention programs should be developed.

Clinician and healthcare managers’ perspectives on the delivery of secondary and tertiary pediatric weight management services

Clinician and healthcare managers' (HCMs) views on weight management service delivery are imperative for informing the nature of future services to treat children with obesity. This qualitative study used semi-structured focus groups and one-on-one semi-structured interviews. Participants were 27 clinicians (medical, nursing, or allied health) and nine HCMs (senior executives in the hospital) who worked in six secondary or tertiary pediatric weight management clinics across five public hospitals in New South Wales, Australia. Clinicians reported that using a combination of group and individual sessions improved engagement with families and reduced attrition rates. Clinicians and HCMs recommended integrating clinics into community centers and providing specific programs for sub-groups, such as children from culturally and linguistically diverse communities or children with developmental delay. Many clinicians and HCMs stressed the importance of pediatric weight clinics using a holistic approach to treatment. To improve the likelihood of future funding for pediatric weight management clinics and to optimize models of care, centers must embed research into their practice. Addressing common barriers to current pediatric weight management services and designing future models of care based on key stakeholders’ preferences is critical to achieving optimal care provision for this high-risk population.

Clinician and carer moral concerns when caring for children who tube-feed

Child healthcare can be vexed by moral concerns – this extends to the care of children who tube-feed. Children who tube-feed often receive care from family members and clinicians of various disciplines. Each brings expertise, experiences, values, and views to a situation, prioritising the child’s needs while attending to those they deem important in potentially disparate ways. Their understanding of a situation is shaped by beliefs, feelings, and perceptions. How then are key decisions made about the care of a child who tube-feeds? This article explores clinicians’ and carers’ moral concerns when caring for children who tube-feed. Interviews with clinicians ( n = 9) and carers ( n = 9) clarified three findings: first, there are often disparate beliefs about the need for tube-feeding; second, tube-feeding can evoke strong emotions; and third, it can be difficult to normalise tube-feeding. This article demonstrates how challenges can emerge when relationships between clinicians and carers diverge. Furthermore, it establishes how an ethic of care can bring different interests together to bolster the relationships required to optimise feeding care and promote health outcomes among children who tube-feed and their carers. This requires improved dialogue between and among clinicians and carers to create shared understandings of what is, what should be, and how to benefit children who tube-feed.