Journal of Child Health Care最新文献

When pediatric services are not coordinated, children, youth, and their caregivers cannot always access the right services at the right time. Guidance is needed for how pediatric services should be planned and organized to improve integrated care. The objective of this rapid scoping review was to map and characterize current evidence on standards of care for integrated pediatric levels of service. This rapid scoping review was conducted in accordance with Cochrane Rapid Reviews Interim Guidance. We searched academic databases and gray literature in 2022, published in English from Canada, United States, United Kingdom, Australia, New Zealand, with no date parameter. Fifty-three sources met inclusion criteria and were included in this review. Levels of service frameworks categorized services into three, four, or six distinct levels. Eight sources described integrated levels of service. Most pediatric standards of care frameworks defined levels of service by roles and responsibilities. Differences were defined by transitions between levels of care, planning for services across urban and rural communities, and coordinating integrated levels of service. Future research is required to build evidence base of how levels of service frameworks can be used in practice, adapted to local contexts, and evaluated.

Children who have survived a cardiac arrest are at the highest risk of long-term impairment, collectively termed Post Intensive Care Syndrome (PICS). This study aimed to explore through participatory and creative methods, children and young people's (CYP) experiences post-cardiac arrest intensive care. Participatory research includes drawing, painting and small-world play. CYPs were recruited who had been admitted to intensive care post-cardiac arrest and had the cognitive and physical ability to talk, draw, paint or play out their experiences. Seven CYPs and families consented to participate. The median number of interviews was two (IQR2,3), with a median interview length of 24 minutes (IQR15,65 minutes). Themes that emerged: gratitude, distrust and extrasensory experiences. Four of the seven (57%) participants opted to paint or draw to convey their experiences. Two (28%) participants had no memories of their cardiac arrest or time in intensive care but used creative methods to express gratitude to the care team. Participatory research methods may be an effective way for CYPs to convey their experiences of post-cardiac arrest intensive care. CYPs who have been critically ill have expressed a need to make sense of their experiences in intensive care. Healthcare professionals should be aware that these experiences may be deemed as extrasensory and require sensitive exploration.

Medical cannabis (MC) has recently emerged as a potential treatment option for pediatric neurodevelopmental conditions and epilepsy. Medical cannabis within these conditions remains limited in evidence-based literature. Caregiver experience can play a valuable role in providing real-world evidence. Thus, this study sought to conceptualize primary caregivers' experiences using medical cannabis to treat neurological conditions in their children. A qualitative multiple-case study design was used to ascertain caregiver experiences. Twelve primary caregivers were interviewed to identify four themes: lack of support, perception of efficacy, positive impacts on children and caregivers, and contribution to real-world evidence from caregivers. Caregivers reported symptom improvement in their children and improved quality of life for their child and family. However, caregivers identified a lack of support from the healthcare system as a challenge. This study highlights that while medical cannabis shows promise as a potential treatment option, there is a great need for more research and subsequent healthcare provider education. Significant barriers to caregivers acquiring knowledge and healthcare provider support put patients at risk. The healthcare system must develop better educational programs regarding the potential role of MC (such as the benefits and side effects in different patient groups and regulatory framework for prescribing) to support children and their families better.

Central venous access devices (CVADs) play a vital role in the administration of anti-cancer therapy; however, skin injuries surrounding insertion sites can develop, resulting in pain and device failure. This review aimed to synthesise and critically appraise studies describing skin injuries related to CVADs in children being treated for cancer. This integrative literature review follows established methodology by Whittemore and Knafl's (2005) guidelines. Studies were included if they had paediatric participants (from birth to 18 years), being treated for a solid or haematological cancer, where the study outcomes measured skin integrity at the CVAD sites. Three databases (MEDLINE, Embase and CINAHL) yielded 613 articles, with six studies meeting the inclusion criteria. Exit site infection ranged from 2.35 per 1000 catheter days to 0 per 1000 catheter days. The rate of skin injury and complications are observed to be as high as 16% for exit site infection and 11% for dermatitis. Infection is an important outcome, but not the sole outcome to consider during CVAD site observation. Often a lack of knowledge and awareness of skin injury can cause device complications and failure which has a negative impact on paediatric cancer patients.

This study aims to understand mothers' dynamic experiences of caring for their children with liver transplant. A descriptive phenomenological qualitative approach was applied to this study. A total of seven mothers participated in this study. Data were collected from April 2020 to June 2020 through face-to-face interviews. Data analysis was performed using Giorgi's phenomenological method. By grouping general meaning units, 8 themes and 19 subthemes were derived. Eight themes are as follows: sorrow and distress of accepting a child's diagnosis; difficulties in deciding to undergo liver transplantation; negative emotions before and after transplant; the support system before and after liver transplantation; achieving a sense of trust toward healthcare providers; new concerns about the child's life after undergoing liver transplantation; appreciation of the experience; and new determination and expectations for future life. This study can contribute to the guideline that describes the role and daily life experiences of caregiving for other parents whose children undergo liver transplantation and nurses who work with impacted families. Healthcare providers can refer to the results to provide liver transplantation childcare and hospital-based support groups for child's family to improve nurses' communication skills.

Parent experiences of child health services can be used to understand their value and optimise the support provision to families during critical developmental periods. A gap in the literature exists regarding parental perspectives of linked child development supports, particularly in disadvantaged areas. This study examined parent experiences of the impact and value of a community paediatric clinic (Kidscope) with linked, multi-agency supports in a disadvantaged area of Ireland. Using a qualitative analysis design, 10 parents participated in one-to-one interviews. A Community Advisory Group consulted on interview schedules. Data was thematically analysed in line with Braun & Clarke's Framework. Five themes and twenty-two sub-themes emerged. Kidscope's linked, multi-agency approach was valuable for engaging families, addressing developmental delay, supporting readiness for education, and developing parent-child relationships. Relational working and a child and family centred model of care empowered parents to become active agents in children's health. Coronavirus disease 2019, national deficits in healthcare, and staff turnover impeded service delivery. Kidscope and linked supports work in partnership to disrupt the impact exclusion from healthcare has on vulnerable children and families. This study provides evidence of an effective integrated paediatric service delivery model designed around vulnerable children and families and highlights areas for improvement.

Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18 years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.

Transgender and gender-diverse (TGD) populations are identified as high-risk for negative healthcare outcomes. Limited data exists on experiences of TGD youths in healthcare. The review aim is to systematically review literature on healthcare experiences of TGD youths. Seven electronic databases were systematically searched for relevant studies. Pre-determined eligibility criteria were used for inclusion with a double-screening approach. Sixteen studies were included. Studies included were quality appraised, data were extracted, and findings were synthesized narratively. Four narratives were identified including experiences of: accessing care, healthcare settings and services, healthcare providers, and healthcare interventions. Long waiting times, lack of competent providers, and fear were reported as challenges to accessing gender-affirming care. Negative experiences occurred in mental health services and primary care, while school counseling and gender clinics were affirming. Puberty blockers and hormone-replacement therapy were identified as protective factors. TGD youths are at risk of negative health outcomes due to an under resourced healthcare system. Further research is needed to assess interventions implemented to improve TGD youth's experiences.

Trust is an essential component of qualified nursing care and correlated with mothers' satisfaction during child's hospitalization. This exploratory qualitative study was conducted to gain a better understanding of trust from mothers of hospitalized children toward pediatric nurses. Data were collected using semi-structured, in-depth interviews with eight mothers with recently hospitalized children. Collected data were analyzed using thematic analysis. As a result, three themes were identified from this study: "assessing the trustworthiness of pediatric nurses," "overcoming emotional burden caused by the child's hospitalization," and "newly recognizing the importance of pediatric nurses." Seven sub-themes were identified. Mothers reported guilt and stress due to their responsibility as the primary caregiver when children were hospitalized. However, mothers felt empowered and gained confidence when trusting pediatric nurses, recognizing their importance, and accepting their help. The result highlights the essential nature of the mother's trust in pediatric nurses, which in turn facilitated emotional support and empowerment for the mothers. Based on this study's insights into the unique experiences of trust from mothers of hospitalized children, pediatric nurses can explore strategies to facilitate trust-building. Based on these findings, pediatric nurses can develop trust-building strategies, tools to assess the level of trust, and interventions to facilitate trust-building.

We aimed to systematically review barriers/facilitators of adherence among adolescents with cancer (aged 10-24 years), following a comprehensive approach to adherence that goes beyond medication-taking. Empirical studies published in English exploring determinants of adherence to medical recommendations among adolescents with cancer were identified in MEDLINE, PsycInfo, and Web of Science, up to October 2021. Records and full-text articles were reviewed by two independent reviewers, and results were classified according to the World Health Organization's (WHO) multidimensional adherence model. Eighteen studies were included. Despite heterogeneity in the definition and measurement of adherence, literature supported barriers/facilitators at patient, treatment, condition, healthcare team/system, and social/economic levels. Specifically, patient-related factors (i.e., psychological functioning and beliefs about disease and treatment) and social-related factors (i.e., family functioning) were major determinants of adolescent adherence. Few studies were conducted, and inconsistent findings were displayed for other dimensions (i.e., healthcare team/system, treatment, and condition-related factors). Adherence is a complex and multidetermined phenomenon. More research is needed to provide critical insights for policymakers and healthcare professionals in planning practices and interventions that effectively address meaningful barriers/facilitators of adolescents' adherence.