Journal of Child Health Care最新文献

Cardiac procedures can be overwhelming for children and parents, with a lack of literature surrounding how healthcare professionals can assist parents in preparing young children for such procedures. This exploratory descriptive qualitative study sought to understand experiences of parents preparing and supporting their child with congenital heart disease, for an upcoming cardiac procedure. Parents of children, aged between three and eight years old, who had undergone a cardiac procedure at a tertiary paediatric hospital in Australia were invited to participate in an interview. Seven parents were interviewed, with recordings transcribed and analysed using reflexive thematic analysis. Four major themes identified were (1) evolving information needs; (2) anticipating anxiety; (3) honesty when delivering information; and (4) equipping parents with resources. Findings from this study emphasised that support for children prior to cardiac procedures must include empowering parents, as they know their child best. A key component of procedural preparation is helping parents navigate how to translate procedural information into explanations which are relatable and appropriate for their child. The development of interactive, relatable resources would allow parents to continue their child's preparation beyond the preadmission visit.

This cross-sectional study explores the types of preventive and chronic care survivors of childhood cancer and pediatric bone marrow transplant receive from their primary care providers. We also identified barriers perceived by survivors to utilization of primary care. Survivors were recruited from a large Midwestern pediatric hospital and completed a demographic and an eight-item semi-structured survey. Parents of survivors <18 years completed the survey for their child and survivors >18 years completed on their own. A total of 259 caregivers (55.7%) and 206 survivors (44.3%) participated. The mean survivor age was 19.76 (SD = 8.89). Most survivors reported having a PCP (n = 400, 87.1%). A subset of survivors self-reported visiting a PCP for chronic care (n = 79, 16.7%). Most common reasons for not having a PCP included unsure who to see (n = 27, 52.9%) and lack of insurance (n = 10, 19.6%). Annual family income (β = 1.53, 95% CI [1.26, 1.86]) and healthcare insurance (β = 6.02, 95%CI [1.25, 29.08]) were predictive of having a PCP. Despite having a PCP, few survivors visited them for chronic care. Interventions are needed to facilitate the transition of survivors to a PCP for management of chronic conditions after their cancer treatment.

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.

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.

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.

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.

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.

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.

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, t 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.