From Active Participant to Active Researcher: What Do Young People Understand about Research?

This paper discusses the outcomes of an initiative to empower young people as active researchers. It highlights participants' understandings of their role as researchers in terms of the meaning of research, the research processes, and the participants' competences, knowledge, and skills. It describes a process that a group of 15 child councillors aged between 15 and 17 years went through that was aimed at equipping them with the knowledge and skills to conduct their research. Based on the data presented, it was clear that from the participants' point of view, the research process was challenging and time-consuming since it entailed several steps that needed to be carried out with careful attention to detail. Despite this, the participants were confident in their ability to undertake independent research, albeit with guidance from adults. Their research abilities and knowledge of child rights improved because of their having conducted research. The participants also noted that their learning was more meaningful when they were engaged in the subject topic, supporting the notion that learning by doing is vital. Due to its emphasis on acquiring children's meaningful participation and illustrating the complex reality of being a part of research, this study has made important contributions to the small body of literature on child participation in Malaysia.

A Tracer Study on Child Participation in Child Councillor Programmes Aimed towards Development of the Child Friendly Cities Initiative.

The Child Friendly Cities Initiative introduced by UNICEF aims to help local governments realise child rights by utilising the UN Convention on the Rights of the Child as its foundation. Using Lundy's model of child participation, which focuses on spaces, voice, audience, and influence, this study assesses young people's participation as child councillors in two programmes in one city in Malaysia. Ten young people who were former child councillors in one state in Malaysia participated in this study. This study employed thematic analysis in analysing the data obtained using focus groups. Based on the data presented, it was clear that adult (the responsible party) understanding of meaningful child participation is still weak. This study offers substantial contributions to the limited body of literature on child participation in Malaysia by focusing on the difficulties of former child councillors in engaging in meaningful participation. Thus, more efforts (for example, by using participatory methods) are needed to educate the responsible party on the importance of addressing the power dynamic between children and adults so that children can participate effectively in decision-making processes.

A rare association of Down syndrome with Dandy -Walker variant, pulmonary hypertension and childhood interstitial lung disease: A case report of a prognostic dilemma.

Associations among Down syndrome (DS), Dandy-Walker variant (DWv), pulmonary hypertension (PH) and childhood interstitial lung disease (chILD) are extremely rare. Several cases of trisomy disorders with Dandy-Walker malformation (DWM) and neurodevelopmental outcomes have been reported. The extent to which moderate to severe pulmonary hypertension with complications of patent ductus arteriosus (PDA), PH and chILD leads to substantial morbidity and mortality in infants with DS and DWM should be studied. We report the case of an ex-premature 15-month-old girl with confirmed DS with DWv, who developed PH and chILD. This is the first case study reporting the complexity of multiple associations involving DS and DWv. This case led to a prognostic dilemma and required compassionate parental counselling because of the child's uncertain future.

Survival and Associated Risk Factors for Mortality Among Infants with Critical Congenital Heart Disease in a Developing Country.

Critical congenital heart disease (CCHD) is associated with significant morbidity and mortality. However, data on survival of CCHD and the risk factors associated with its mortality are limited. This study examined CCHD survival and the risk factors for CCHD mortality. Using a retrospective cohort study of infants born with CCHD from 2006 to 2015, survival over 10 years was estimated using Kaplan-Meier analysis, and the risk factors for mortality were analyzed using multivariate Cox proportional hazards regression. A total of 491 CCHD cases were included in the study, with an overall mortality rate of 34.8% (95% confidence interval [CI] 30.6-39.2). The intervention/surgical mortality rate was 9.8% ≤ 30 days and 11.5% > 30 days after surgery, and 17% died before surgery or intervention. The median age at death was 2.7 months [first quartile: 1 month, third quartile: 7.3 months]. The CCHD survival rate was 90.4% (95% CI 89-91.8%) at 1 month, 69.3% (95% CI 67.2-71.4%) at 1 year, 63.4% (95% CI 61.1-65.7%) at 5 years, and 61.4% (95% CI 58.9-63.9%) at 10 years. Weight of < 2 kg at diagnosis, associated syndromes, poor pre-operative condition, and non-duct-dependent CCHD were independent risk factors for poor survival, with hazard ratios of 2.61, 2.10, 2.22, and 1.70, respectively. CCHD is associated with a high mortality rate. Low weight, poor pre-operative condition, associated syndromes, and non-duct-dependent CCHD are significant risk factors affecting the survival of infants with CCHD.