Journal of Child Health Care最新文献

Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.

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.

The principle that children and young people are capable of forming their own views, have the right to express those views, and are entitled to have those views taken seriously was introduced by the United Nations Convention on the Rights of the Child (UNCRC) in 1989. The implications for the delivery of healthcare are clear; however, children and young people continue to experience difficulty in having their views heard and taken seriously during healthcare encounters and the effectiveness of the UNCRC, in particular Article 12 appears to be limited. This article will discuss how, 30 years on, significant barriers continue to impede the full implementation of Article 12. In recognition of the limited awareness of its scope or even existence by health professionals working with children, a framework that can facilitate a better understanding of the concept of voice, and articulate healthcare organisations' full responsibilities when it comes to Article 12, is presented.

Food insecurity is a significant social and health issue for children in high-income countries and contributes to sub-optimal child outcomes. This scoping review examines how food insecurity intersects with the moral experiences of those involved in providing and receiving paediatric health care. Multiple databases were searched using a priori inclusion criteria, papers were screened by multiple reviewers. Searches yielded nine papers. Descriptive data was summarised and qualitative results extracted from included papers were analysed using inductive and deductive thematic analysis. Four main themes emerged: Food insecurity threatens caregiver and healthcare provider identity; is food insecurity the business of health? is screening for food insecurity surveillance or facilitating assistance? and the lived experience of navigating the tension of managing food insecurity and a child's health condition. The moral experiences lens has magnified the countless everyday encounters in which values and beliefs about what is 'right' or 'just' can be realised or thwarted in the context of the intersection between healthcare and food insecurity. Review findings have implications relating to the inclusion of children's voices in healthcare settings, healthcare practice and policy design, and the development and use of FI screening tools.

Mainstream law and ethics literature on consent to children's surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies.Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion.Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children's reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children's consent or refusal before non-urgent surgery as a shared personal moral experience within the child's life course, beyond mere legal compliance. Adults help children to understand and 'want' the surgery that offers things they value: better health or to 'be more like their friends'. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.

Children attending hospital for a clinical procedure such as a scan or blood test can experience anxiety and uncertainty. Children who are informed and supported before and during procedures tend to have a more positive experience. Despite this, there is a lack of empirical evidence directly from children around how they would like to be supported before, during and after a procedure. This qualitative study used improvised drama workshops to investigate children's (n = 15, aged 7-14 years) perceptions and opinions of attending hospital for a procedure and what would help them have a positive encounter. Children portrayed themselves as having a small presence during a hospital procedure, depicted by the two themes of 'having to be brave but feeling scared inside' and 'wanting to get involved but being too afraid to ask'. Within both themes, children described how the directive and reassuring language and actions used by health professionals and parents marginalized their contributions. This study shows that children attending hospital for procedures value the opportunity to have a presence and active role, to express their emotions, join in interactions and be involved in making choices about their care.

Little is known about the prevalence of negative weight-biased attitudes among Dutch healthcare professionals (HCPs) when treating children and adolescents with obesity and whether interdisciplinary differences are present. Accordingly, we asked Dutch HCPs that treat pediatric patients with obesity to complete a validated 22-item self-report questionnaire about their weight-biased attitudes. In total, 555 HCPs participated from seven different disciplines: 41 general practitioners (GPs), 40 pediatricians, 132 youth healthcare physicians, 223 youth healthcare nurses, 40 physiotherapists, 40 dieticians, and 39 mental health professionals. HCPs from all disciplines reported to experience negative weight-biased attitudes among themselves. Pediatricians and GPs scored highest on negative weight-biased attitudes, including frustrations in treating children with obesity, and feeling less confident and prepared to treat children with obesity. Dieticians scored the least negative weight-biased attitudes. Participants from all groups perceived weight bias expressed by their colleagues, toward children with obesity. These findings are comparable to results reported by adult HCPs from other countries. Interdisciplinary differences were found and underscore the need for more research on contributing factors that impact explicit weight bias among pediatric HCPs.

Client autonomy is important in Dutch youth care. It correlates positively with mental and physical health and can be strengthened by professional autonomy-supportive behaviour. Aiming for client autonomy, three youth care organisations co-developed a client-accessible youth health record (EPR-Youth). Currently, limited research is available on how client-accessible records contribute to adolescent autonomy. We investigated whether EPR-Youth strengthened client autonomy and whether professional autonomy-supportive behaviour reinforced this effect. A mixed methods design combined baseline and follow-up questionnaires with focus group interviews. Different client groups completed questionnaires about autonomy at baseline (n = 1404) and after 12 months (n = 1003). Professionals completed questionnaires about autonomy-supportive behaviour at baseline (n = 100, 82%), after 5 months (n = 57, 57%) and after 24 months (n = 110, 89%). After 14 months, focus group interviews were conducted with clients (n = 12) and professionals (n = 12). Findings show that clients using EPR-Youth experienced more autonomy than non-users. this effect was stronger among adolescents aged 16 and older than among younger adolescents. Professional autonomy-supporting behaviour did not change over time. However, clients reported that professional autonomy-supporting behaviour contributed to client autonomy, emphasising that professional attitude needs addressing during implementation of client-accessible records. Follow-up research with paired data needs to strengthen the association between using client-accessible records and autonomy.

Esophageal Atresia/Tracheoesophageal Atresia (EA/TEF) is a multisystem congenital anomaly. Historically, children with EA/TEF lack coordinated care. A multidisciplinary clinic was established in 2005 to provide coordinated care and improve access to outpatient care. This single-center retrospective cohort study was conducted to describe our cohort of patients with EA/TEF born between March 2005 and March 2011, assess coordination of care, and to compare outcomes of children in the multidisciplinary clinic to the previous cohort without a multi-disciplinary clinic. A chart review identified demographics, hospitalizations, emergency visits, clinic visits, and coordination of outpatient care. Twenty-seven patients were included; 75.9% had a C-type EA/TEF. Clinics provided multidisciplinary care and compliance with the visit schedule was high with a median of 100% (IQR 50). Compared to the earlier cohort, the new cohort (N = 27) had fewer hospital admissions and LOS was reduced significantly in the first 2 years of life. Multidisciplinary care clinics for medically complex children can improve coordination of visits with multiple health care providers and may contribute to reduced use of acute care services.