The onset of childhood cancer is sudden and unexpected, and the effect on the family unit can be enormous as they embark on a major life transition. Families of children with cancer have a high level of psychosocial needs due to the many challenges they may face during their child's cancer journey. Previous research indicates that the current healthcare system does not always meet these needs. This qualitative descriptive study aimed to explore the impact of a new Cancer Support Specialist Service from the perspective of the families and the multidisciplinary team. Data were collected using semi-structured one-to-one interviews. The impact on the family was increased emotional, practical, informational, and navigational support. The impact on the MDT included freeing up time for the clinical component of their work, decreasing worry that unmet needs for parents were not being addressed, and increasing access to timely flexible support for families. The knowledge advanced by this study can inform future planning of the Cancer Support Specialist Service.

Children with medical complexity (CMC) are regularly admitted to inpatient care units to receive medical care. While admissions for CMC and their parents can negatively impact their health and well-being, mapping of evidence in this area appears underreported. A scoping review using the Joanna Briggs Institute methodology was conducted to map evidence on CMC and parents' experiences of care. The purpose of this paper is to report the findings from the scoping review specific to CMC and parents' experiences of care on their health and well-being. A total of 24 articles were synthesized, and themes included: psychological impacts for parents, impacts on functions of daily living, parents' coping strategies for psychological well-being, impacts of hospitalization on CMC, CMC coping strategies, spirituality, and interventional studies. Findings from this review demonstrate that CMC and their parents struggled with their psychological and emotional well-being and that both CMC and parents coped with the stress of hospitalization in a variety of ways. Healthcare professionals need to be educated on how to support CMC and their parents during hospitalization. Future development and implementation of innovative care models and interventions that offer CMC and their parents with enhanced psychosocial support are recommended.

There can be adverse psychosocial outcomes for children who have negative healthcare experiences. Identifying children's risk for experiencing elevated distress early on when entering the healthcare setting would allow targeted, proactive support to help mitigate negative psychological sequelae. The aim of this retrospective study was to evaluate the psychometric properties of the Pediatric Emotional Safety Screener (PESS), designed to screen for psychosocial distress for pediatric patients. A Child Life Department conducted a program evaluation, screening 1643 patients using the PESS in six different service areas including acute inpatient, critical care, emergency department, radiology, surgery, and ambulatory clinics. Certified child life specialists (CCLS) completed a Psychosocial Risk Assessment in Pediatrics (PRAP) and provided their assessment of priority level for child life support for each patient screened. Secondary analysis of the data evaluated the psychometric properties of the PESS. Findings indicated good internal consistency for the PESS. PESS scores significantly correlated with both PRAP scores and CCLS priority level. The PESS is a promising standardized method for health-care providers to screen pediatric patients' risk for experiencing significant distress during their healthcare visit to determine the need for support from a CCLS.

The aim of this study was to understand the family perception and emotional impacts on caregivers of children with chronic conditions who remained hospitalized in intensive care units for an extended period. A qualitative, descriptive-exploratory study, grounded in symbolic interactionism, was conducted with 10 primary caregivers of children with long-term experience in a Brazilian intensive care unit. Interviews were conducted, either remotely or in person, and were analyzed using thematic content analysis supplemented by lexical analysis. Through symbolic interactions, it was observed that families had to reorganize themselves in the face of a context filled with insecurities and permeated by losses. These losses begin with the diagnosis of the chronic condition and are intensified by prolongated hospitalization, which brings numerous uncertainties about the child's future, leading to a reorganization of life. Over time, some families experience discharge and must adapt to home care; others remain hospitalized, continuing to face impactful experiences; and some have lost their child, having to reorganize themselves during grief. This study highlights the urgent need to reflect on ways to care for families, aiming to reduce the impacts experienced during prolonged hospitalizations and to empower them in the care of the child.

This study aimed to examine the factors associated with transition readiness based on the healthcare transition model among adolescents and young adults (AYAs) with spina bifida (SB) in the individual (self-management and self-efficacy), family or social support (family function and social support), healthcare system, and environmental (transition environment) domains. Using face-to-face and online surveys, we conducted a cross-sectional study on AYAs with SB in South Korea. The participants were aged 13-25 years. Data were analyzed using descriptive statistics, test, one-way analysis of variance, Pearson's correlation coefficients, and multiple regression analysis. A total of 110 AYAs with SB participated in this study. Their mean age was 19.85 (SD = 3.65) years. The mean score of transition readiness was 3.89 (SD = 0.70) out of 5. Transition readiness was statistically significantly associated with general (age), clinical (mobility), and individual (self-management) characteristics and family or social support (social support) and the healthcare system. These results suggest that it is necessary to develop tailored transition care programs that consider factors associated with transition readiness for AYAs with SB. The findings of this study increase our understanding of the transition readiness of AYAs with SB, which can help in the development of effective transition strategies.

Type 1 diabetes mellitus in children is one of the most common chronic health conditions, requiring constant monitoring and care. Living with children who are diagnosed with chronic illness affects multiple aspects of parents' daily lives, including the physical, mental, and social aspects. Due to their child's diabetes, parents may experience many special difficulties with their daily responsibilities. This study describes parental experiences caring for a child with type 1 diabetes. The study was based on semi-structured interviews with 10 parents caring for a child with type 1 diabetes. We analyzed the interviews using Colaizzi's strategy of descriptive phenomenological data analysis in nursing research. Participants were described a profoundly challenging situation, and they were in need of support to help them handle a challenging life situation, especially during the first years of a child's diagnosis. The following themes emerged from the data: adapting to the new reality after diagnosis, keeping up with the child's treatment regimen, psychological, social, and financial burdens, and staying tuned for complications.

Treatment adherence is important but challenging for young people with inflammatory bowel disease (IBD). Behavioural interventions may support adherence, leading to improved condition management. This review aimed to evaluate interventions designed to improve treatment adherence in young people (aged 13-18) with IBD and identify their use of behaviour change theory and behaviour change techniques (BCTs). Five databases (PsycInfo, Embase, MEDLINE, Web of Science and Scopus) were searched to identify eligible articles published between 1980 and 2022. Articles were critically appraised using the Mixed Methods Appraisal Tool. Findings were synthesised narratively. Seven articles reporting seven oral medication adherence interventions were included. Study designs included five randomised controlled trials and two single-arm clinical trials. Eleven BCTs were identified across seven articles. No article discussed how an intervention was informed by behaviour change theory. Interventions that included additional family members and/or offered tailored adherence support generally had greater effects, as did interventions including education and goal setting components. Reporting of intervention content was poor, limiting our ability to make concrete recommendations regarding intervention effectiveness, use of behaviour change theory and BCTs. Further research is needed to understand how theory-driven behaviour change interventions can improve treatment adherence in young people with IBD.

Learning to communicate with infants in a neonatal unit setting is challenging. Parents need time and support to feel confident and acquire skills that enable them to care for, be close to, and communicate with their infant. This qualitative, narrative-based study sought to investigate parents' understanding of factors that enhance or prevent the development of early communication and interaction between preterm infants and parents within a neonatal setting. Our study used a narrative interview approach with eight parents of premature infants, to explore the enablers and challenges to communication. Reflexive thematic analysis revealed four main themes: Impact of being in the neonatal unit, different communication strategies, communication barriers and an ongoing need for support at home. Our findings provide parental insight into communication between themselves and their premature infants. Overall, parents spoke highly of communication strategies that they were taught but it was clear they received varying advice and support, in the neonatal unit and post-discharge. There is a need for clear, consistent, and culturally appropriate communication strategies with greater awareness of how to facilitate them. Since failure to enable parent-infant interactions may potentially mean delayed language development, there is an essential need for tailored parent-accessible resources.

Cystic fibrosis (CF) affects not just patients but also their families, highlighting the need for a comprehensive care approach. This descriptive qualitative study aimed to explore the informational needs of family caregivers of children with CF, focusing on how these needs can be addressed within a Patient and Family-Centered Care (PFCC) framework. The study was conducted at a public hospital in Brazil. Thirteen caregivers were interviewed, and their responses were analyzed using content analysis guided by PFCC principles. Analysis revealed three primary themes: Types of Information for Family Caregivers of Children and Adolescents with CF; sources of Information for Family caregivers of Children and Adolescents with CF; and Beyond Information: the need for emotional support and family-centered care in CF management. Caregivers sought comprehensive information about CF management from healthcare professionals and informal sources like social media. Our findings emphasize the diverse and evolving informational needs of family caregivers. Overall, this study underscores the necessity of incorporating PFCC principles, especially those addressing information sharing, in managing CF, extending beyond medical treatment to include emotional support and active family participation in care and decision-making processes.

Using a blended diet as an alternative to commercial formula is becoming more popular amongst parents and carers of children and young people (CYP) requiring long-term enteral tube feeding (ETF). Emerging evidence has demonstrated physiological and social benefits; however, families report feeling unsupported to use a blended diet in settings outside the home. This study aimed to explore the attitudes of health and social care staff towards the use of blended diets for CYP. Health and social care professionals with experience of blended diets were invited to partake in an online semi-structured qualitative interview. Thematic analysis was used to identify themes. Five participants from health, education and social care settings were interviewed. Online interviews worked effectively for data collection to allow flexibility to accommodate participants' care roles and avoid face-to-face contact necessary with Coronavirus disease 2019 restrictions. Three themes were identified in the data:• Change from medicalised enteral tube feeding practice.• Individual, person-centred approach.• Open support networks and responsibility.Findings showed that blended diets can be accommodated; however, barriers to implementation remain. Medicalisation of ETF continues to impair acceptance of blended diets whilst effective multi-disciplinary team communication and support facilitates its use in settings outside the home.

Children with chronic illnesses often miss school, leading to negative outcomes like diminished health-related quality of life (HRQoL) and sense of belonging. Telepresence robots are suggested to keep these children connected to peers and education, yet little research has explored their impact. This study assessed effects of a telepresence system on HRQoL and sense of belonging in 29 patients with chronic illnesses aged 6 to 18 years, who were absent from school. Using a one-group pre-posttest design, participants completed questionnaires before and 6 months after receiving the robot. It was expected that HRQoL and sense of belonging would remain stable due to the robot. Wilcoxon tests indicated no decline in HRQoL (Z = -.958, 95% CI [-3.1, 8.3]) or sense of belonging (Z = -1.409, 95% CI [-0.3, 0.8]). Spearman correlations revealed a significant correlation between age and changes in school (rs = 0.621, 95% CI [0.200, 0.848]) and friends' subscales (rs = 0.579, 95% CI [-0.136, 829]), suggesting adolescents benefit particularly from the robot. Consistent with prior research, this study shows no change in psychosocial factors, indicating a stabilizing effect of telepresence robots and contributing to sustainable psychosocial care for pediatric patients.

Hirschsprung's disease is a common cause of lower intestinal obstruction in newborns. It has variable postoperative outcomes affecting quality of life. The study was aimed at assessing postoperative bowel function in children with Hirschsprung's disease. It was conducted on 120 children operated for Hirschsprung's disease. A structured questionnaire for bowel function score was used and analyzed using relevant statistical tests. Of the 120 children in the study, 97 (80.8%) were male with 49 (40.8%) diagnosed during neonatal age and others by 2 years of age. Ninety-three (77.5%) of them had the classic type. Diversion colostomy was done in 104 (86.6%), and two-staged endorectal pullthrough was performed in 62 (72.5%) of cases with a 16% rate of retained aganglionosis. Postoperative continence was excellent in 46 (57%) and good in 26 (32%) with an incontinence rate of 11%. None of the outcome predictor showed significant influence. Optimal postoperative bowel function was obtained in the majority of patients with two-stage procedures, and the overall outcome of bowel function in children was not influenced by age, gender, level of aganglionosis, and type of procedure. Longer follow-up periods are required for definitive information.

The Care for Child Development (CCD) program may improve child development outcomes in resource-limited settings, but has not yet been adapted to group-based settings to facilitate sustainable dissemination. In this study, we determined the acceptability and feasibility of a group-based CCD program, with evaluation of program outcomes for child development, home environment, and symptoms of maternal depression as secondary outcomes. We evaluated this adapted program using a 2 × 2 crossover-designed pilot study administered over 10 bi-weekly sessions. Acceptability and feasibility were assessed through focus group discussions using qualitative methods. Child development, home observations, and symptoms of maternal depression were evaluated at baseline, 6 months, and 12 months and assessed quantitatively. Twenty-six mother-child dyads participated. Overall, they perceived CCD as acceptable and feasible, and especially beneficial within its group-based format. Although there were no measured improvements in child development, improvements in stimulating home environments (mean difference 2.5, 95% C.I. [0.37, 4.72]) were found. Further scale-up of this intervention is needed to determine effectiveness.

The current systematic literature review aimed to summarize and evaluate existing literature regarding parental relationship functioning during and after childhood cancer, with an exploratory evaluation regarding the impact of national health coverage model (proxy for finances). This review used MEDLINE, PsychInfo, Embase, and CENTRAL search database. Articles were reviewed ( = 3060) against inclusion criteria, with 512 abstracts screened and 87 full-text retrieved and reviewed. Inclusion criteria: (1) childhood cancer, (2) measures parental relationship functioning, (3) English, and (4) new, empirical data. A modified version of the Downs and Black checklist was used to assess risk of bias. Narrative synthesis was used to present and discuss results. Final included articles ( = 36) revealed mostly positive or neutral findings across parental relationship functioning subdomains within 6 months (T1) and after 6 months (T2) of childhood cancer diagnosis. Sexual intimacy was negatively impacted across timepoints. Parental stress was higher than norms at T1. Marital conflict and adjustment were also worse at T1 but returned to previous levels at T2. Some variability in parental relationship functioning was observed among the different health coverage models, but these differences were not significant. Results support systematic screening and systems-based parent support programs for families of children with cancer. Mixed-methods studies examining parental relationships longitudinally and utilizing operational definitions for out-of-pocket spending are needed.

Wish-granting is a form of positive psychological intervention that seeks to promote child wellbeing by fulfilling a wish of their choice. This study aimed to explore families' experiences of receiving wish-granting interventions to understand how wishes impact wellbeing. Fifty in-depth semi-structured interviews were carried out with 22 families (23 parents, 17 young people); seven charity volunteers; and five health professionals, recruited from the United Kingdom. Interviews were transcribed verbatim and analysed using a thematic framework approach. Findings suggest wishes improve wellbeing by increasing positive emotion; by broadening families' horizons; by providing an alternative focus; and by fostering opportunities for togetherness. To grow and maintain impact, consideration should be given to developing strategies that increase anticipation; keep wish memories alive; encourage children to make wishes that stretch their perceived limitations; and facilitate families to share their experiences and 'give back' to the community.

The aim of this study was to investigate Swedish children's and parents' attitudes and knowledge about human papillomavirus (HPV) vaccination a year after gender-neutral HPV vaccination was introduced in Sweden's national immunization program (NIP). Additional information about HPV and vaccine was provided in the extended immunazation program. In total, 276 parents and 206 children from 22 School Health Services responded to a web-based survey. Results showed that half of the children and about a third of the parents received additional Public Health Agency information about HPV vaccination, and a majority were satisfied. Parents considered HPV vaccination being important for their children's health, and both children and parents considered it important to vaccinate all genders against HPV. Both children and parents rated school nurses as most reliable source of HPV vaccination information. Teachers were also a common source of HPV and HPV vaccination information for children. Further research among teachers in Sweden is needed to explore their knowledge and abilities to inform students and parents about HPV and vaccination.

Practices for promoting a child's best interests in rehabilitation are not sufficiently understood. This study describes the practices from the perspectives of professionals and parents of children with disabilities. We conducted 11 interviews: 5 in focus groups with professionals ( = 27 [69%]), 3 with parents ( = 9 [23%]), and 3 individual interviews of paediatric neurologists ( = 3 [8%]). We used a qualitative approach, which included inductive content analysis, to examine the transcribed interview data. The practices for promoting a child's best interests consisted of collective framing of child-specific rehabilitation, fostering a fulfilling daily life for the child, and ensuring appropriate rehabilitation. This was enhanced by using child-specific practices and comprehensively understanding the child's rehabilitation in everyday life but was hindered by the absence of an established process and guidelines. The results highlighted substantial challenges in collaboration aligned with the child's best interests, enabling the child's active participation, and addressing the individual needs of the child and family. Promoting best interests through family-professional partnerships by using a systemic and ecological approach could guide the rehabilitation process and ensure the child's right to participate.

Unsettled infant behaviours are highly prevalent in the postnatal period and constitute a significant proportion of visits to healthcare services. Unsettled infant behaviours can be highly distressing for parents and are identified as a significant risk factor for postnatal depression. Understanding parents' experiences is paramount to reducing the gap between consumer expectations and service delivery. This study employed a qualitative descriptive approach to explore parents' experiences seeking healthcare advice for their infant with unsettled behaviours. Semi-structured interviews were conducted with 20 mothers. Inductive thematic analysis yielded two overarching themes: (1) 'the journey for answers', consisting of five sub-themes, and (2) 'parents' knowledge and behaviours', consisting of six sub-themes. Despite some positive interactions with healthcare services, mothers generally spoke negatively of their overall experience seeking answers and receiving care for their infant, and they felt the healthcare services they attended were not equipped to meet their needs. To address the gap between service delivery and consumer expectations, mothers relied on online communities for advice and emotional support. The findings of this study highlight several discrepancies between mothers' expectations and service delivery in the context of unsettled infant behaviours, and this paper makes recommendations to address identified shortcomings in approaches to care.

Research with siblings of children with congenital heart disease (CHD) is scarce, although more than one-third of them experience limitations on their quality of life. This interview study aims to explore the diagnosis-associated experience of German siblings of children with CHD, their interest in a potential intervention, and potential key topics and contextual conditions of such an intervention. Interviews with 10 siblings aged 10 to 21 and a respective parent were conducted from August to October 2021, resulting in 20 interviews. Negative experiences associated with CHD included concerns regarding hospitalization, health deterioration, and the death of the child with CHD, as well as burdens including reduced family activities, less parental attention and support, and extended family meals. Positive experiences included perceived positive consequences of CHD, such as strong family cohesion and empathy toward people with chronic illnesses. Furthermore, siblings experienced enhanced coping mechanisms, such as having conversations with friends and family about the high prevalence of CHD and successful treatment or using distractions such as entertainment or study. Siblings' reported interest in a future intervention included empathy, peer support, and studying medical information on CHD. These findings should be used for counseling and developing tailored interventions to support these siblings.