Journal of Child Health Care最新文献

When planning paediatric trials, it is important to consider how best to communicate with children and young people (CYP) so they understand what they are taking part in. It is also important to consider what information they need. Involving CYP as research participants leads to research that is more relevant although it can be difficult to engage CYP in qualitative research to improve trial materials due to the topic area. This paper describes how a visual ranking exercise within qualitative interviews acted as a helpful conduit to engaging discussions to inform a co-designed website with information for trial participants. 40 people participated in interviews during which the ranking exercise was used (11 CYP aged 9-18 years, 14 parents, 15 professionals). We found the ranking exercise supported participant engagement and prevented them feeling that particular responses were expected. It also enabled participants to discuss their ranking (and decisions behind this) with other participants and the researcher. Co-design interviews with CYP that use interactive exercises such as ranking are likely to elicit richer data than those relying on traditional questioning techniques.

Child-focused anthropologists have described how sick-children utilise 'Play' and 'imagination' as a tool to cope and make-meaning of their illness-experiences. Health Play Specialists (HPS) are professional healthcare-workers who advocate for children and use 'playful' methods to improve communication with, and the lived-experience of, children in hospital. The research aim of this study was to identify strategies and methods employed by HPS to effectively communicate with children. The research methodology comprises interviews conducted with HPS and utilises a qualitative data-analysis model. The main findings include: the importance of 'Play' for chronically ill children; how HPS utilise material-resources to explain illnesses and procedures to children; structural challenges HPS face as a profession; and applicable advice for paediatric-healthcare-workers. This research highlights the importance of introducing a 'pro-play' mindset to healthcare-workers, in order to facilitate children's basic human-rights in hospital. It seeks to advocate for the potential of 'Play' and the value of HPS within paediatric-healthcare-settings, as well as the need for further recognition and multidisciplinary research in this area.

Parents encounter challenges when their child with congenital heart disease is transferred from pediatric to adult care. Until recently these parents' experiences and expectations of their child's transfer have received less attention. This systematic review aims to identify and synthesize qualitative evidence on parental experiences and expectations about their child's transfer from pediatric to adult care using a meta-aggregation approach. Six studies were included with 39 findings being aggregated into seven categories. Three syntheses were formed: Information is a prerequisite for supporting young people's transfer. The transition process should be well-prepared, individualized, and based on young people's maturity. Changing parental roles causes ambivalent feelings requiring support in the transfer process. Parents regard transfer from pediatric to adult care as a natural developmental step. However, some parents are anxious and worried while others found the transfer as feasible as other transitions in their child's life. Involving parents in the transition process enables them to facilitate their child's transfer. Parents worry their child is too young to take responsibility for their health. Parental roles from being a full caregiver to becoming a supportive person cause ambivalent feelings. These findings align with research on parents' experiences of young people with long-term conditions.

Research partnerships between researchers and knowledge users (KUs) in child health are understudied. This study examined the scope of KU engagement reported in published child health research, inclusive of health research partnership approaches and KU groups. Search strategies were developed by a health research librarian. Studies had to be in English, published since 2007, and were not excluded based on design. A two-step, multiple-person hybrid screening approach was used for study inclusion. Data on study and engagement characteristics, barriers and facilitators, and effects were extracted by one reviewer, with 10% verified by a second reviewer. Three hundred fifteen articles were included, with 243 (77.1%) published between 2019 and 2021. Community-based participatory research was the most common approach used (n = 122, 38.3%). Most studies (n = 235, 74.6%) engaged multiple KU groups (range 1-11), with children/youth, healthcare professionals, and parents/families being most frequently engaged. Reporting of barriers and facilitators and effects were variable, reported in 170 (53.8%) and 197 (62.5%) studies, respectively. Publications have increased exponentially over time. There is ongoing need to optimize evaluation and reporting consistency to facilitate growth in the field. Additional studies are needed to further our understanding of research partnerships in child health.

Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.

We aimed to systematically categorize evidence on the types of early visual stimulation applied to preterm infants (PTIs) admitted to neonatal intensive care units (NICUs), aiming to improve visual function parameters. This study was conducted according to PRISMA and registered in PROSPERO with CRD42022333753. Last search was conducted on March 15, 2023, in four different databases. Articles written in English, Portuguese, Spanish, or Italian, and available in full text were included. Two independent authors performed study selection, data extraction, and bias risk assessment. If there was any disagreement, a third author was contacted. A total of eight studies were included. From these, 62.5% presented a low risk of bias. 100% used a multisensory intervention, which included visual stimulation. In 50%, visual intervention consisted of black and white stimulation cards placed inside the incubator for three minutes. The outcomes showed positive benefits in visual function parameters and other reported clinical benefits in breastfeeding and neuromuscular development. This review demonstrated there is still scarce literature on the effects of early visual stimulation on purely visual functional outcomes, although the existing findings are promising. Parental involvement has been generating unquestionable benefits for the binomial mother-infant and gaining greater acceptance by health professionals.

The Congenital Heart Disease Standards for England indicate that parents and children should have access to a 24-h telephone advice service, however, little is known about existing services. This paper presents phase two of a mixed-methods service evaluation, which aimed to evaluate staff experiences of telephone communication with these parents. All nursing and support staff in a single specialist children's cardiac surgical centre were invited to participate in an online survey during July-November 2019. Data were descriptively and thematically analysed. Participants (N = 39) were predominantly nurses (n = 32, 82%) with 64.1% (n = 25) working in the speciality >10 years. Positive experiences included: signposting and preventing further deterioration; supporting families to get expert advice quickly; providing reassurance. Challenging experiences included: offering advice without being able to see the child, dealing with telephone calls alongside busy workload; and parents running out of medications and telephoning out of hours. In conclusion, taking telephone calls were perceived to be time consuming and are potentially high risk. A standardised approach to assessment, intervention and documentation was deemed necessary. Implementation of an updated parental early warning tool was recommended, along with staff and parental education.

Parental involvement in childhood cancer care is of utmost importance, but the understanding of parental recognition, appraisal, and reactions to childhood cancer in settings such as Ghana is limited. We conducted an empirical phenomenological study to explore these aspects among Ghanaian parents. Twenty parents were purposively sampled to participate in semi-structured interviews between June and September 2022. All interviews were transcribed and analysed using an inductive thematic approach. We found that parents recognised symptoms through personal observation and their child's self-report, often perceiving them as non-severe. Emotional reactions upon receiving their child's cancer diagnosis included psychological distress, fear, doubts, and confusion. Enduring emotions experienced by parents were fears of disease recurrence and impending death of their child. Parents assumed the role of nurses at home, monitoring therapy effects, managing pain and symptoms, and dressing wounds. In conclusion, parents in Ghana play a crucial role in the recognition, diagnosis, and treatment pathways of childhood cancer. To enhance their ability to recognise symptoms and take timely actions, it is recommended to implement media programs and health education initiatives targeting parents.

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.