Introduction Paediatric Intensive Care has developed rapidly in recent years with a dramatic increase in survival rates. However, there are increasing concerns regarding the impact that admission to a Paediatric Intensive Care Unit (PICU) has on both the child and their family. Following discharge from PICU, children may be living with complex medical problems as well as dealing with the psychosocial impact that their illness has had on them and their family. Objectives To describe the long-term health outcomes of children admitted to a paediatric intensive care unit (PICU). Methods A full literature search was conducted including the databases; MEDLINE via PubMed, Cochrane Central Register of Controlled Trials, (CENTRAL), Scopus, Web of Science, CINAHL, ERIC, Health Source Nursing/Academic, APA PsycInfo. All studies including children under 18 admitted to a PICU were included. Primary outcome was short- and longerterm mortality. Secondary outcomes were neurodevelopment/cognition/school performance; physical function, psychological function/behaviour impact, quality of life outcomes and social/family implications. Studies focused on Neonatal Intensive Care Admission and articles with no English translation were excluded. Results One hundred and five articles were included in the analysis. Mortality in PICU ranged from 1.3% to 50%. Mortality in high income countries reduced over time but the data did not show the same trend for low- and middle-income countries. Higher income countries were found to have lower Standardised Mortality Rates (SMRs) than low- and middle-income countries. Children had an ongoing risk of death for up to 10 years following PICU admission. Children admitted to PICU also have more ongoing morbidity than their healthy counterparts with more cognitive/developmental problems, more functional health issues, poorer quality of life as well as increased psychological problems. Their parents also have an increased risk of Post Traumatic Stress Disorder (PTSD). Discussion Most of the studies identified are from high income countries and only include short-term follow up. More data is needed from low- and middle-income countries and over longer terms. The studies were markedly heterogenous and were all observational. Agreement is needed regarding which outcomes are most important to measure as well as standardised methods of assessing them. Further research is needed to identify the risk factors which cause children to have poorer outcomes as well as to identify predictive and modifiable factors which could be targeted in practice improvement initiatives.

Background: The prevalence of neonatal dysphagia is increasing, as medical advances contribute to the survival of critically ill and preterm infants. Additional factors such as low birth weight (LBW), gastroesoephageal reflux disorder (GERD), failure to thrive (FTT) and exposure to HIV may increase the complexity of dysphagia symptoms. Knowledge of context-specific risk factors for dysphagia in the neonatal intensive care unit (NICU) may lead to an effective pathway of diagnosis and management in vulnerable neonates. Objective: The objective was to describe the feeding characteristics and categories of underlying medical conditions in 24 to 42 week gestational age infants while still in the NICU and who were referred for feeding and swallowing assessment. Method: The study was a retrospective investigation of 231 purposively selected medical and speech-language therapy records. Participants had a mean stay of 28.5 days in the NICU of a peri-urban public hospital and all had feeding concerns. An existing seven-category framework for the classification of suspected dysphagia was used. Results: Feeding characteristics of the participants demonstrated that 65.0% had previous enteral tube (NGT/OGT) feeding, and only 15.6% were referred for instrumental assessments such as a VFSS by doctors or speech-language therapists (SLTs). The majority of participants used a mixed manner of feeding such as cup and breastfeeding, or cup and syringe feeding. Only 29.7% of participants was able to breastfeed exclusively which was an indication of feeding difficulties as the hospital where the study was conducted promotes exclusive breastfeeding. Results indicated that the majority of participants (90.04%) presented with multiple medical conditions. Underlying neurological conditions (48.48%) and feeding difficulties secondary to systemic illness (65.80%) contributed mostly to suspected dysphagia in the sample. It was found that 70.99% of infants presented with feeding difficulties secondary to other conditions such as LBW and prematurity, highlighting the need for an expanded dysphagia classification framework. Conclusion: The results are in agreement with the outcomes of previous research and confirm the need for a unique classification framework for dysphagia in South Africa. Neonatal dysphagia is a complex condition and frequently associated with multiple risk factors. / Dissertation (M Communication Pathology)--University of Pretoria, 2016. / Speech-Language Pathology and Audiology / MCommunication Pathology / Unrestricted

This dissertation is a qualitative study of how vocal improvisation within music therapy groups may afford the construction of social resilience for in-patient adolescents in oncology wards. The study was conducted at the Pediatric Oncology Unit at the Steve Biko Academic Hospital in Pretoria. The case study involved six daily group music therapy sessions, with four to eight participants. The primary music therapy technique was vocal improvisation to assess how the participants perform themselves as resilient (or not). Excerpts of video recordings were analyzed through Gee’s (2005) suggestion for discourse analysis. Session notes were written as an additional data source to contextualize the excerpts. Through discourse analysis, four primary discourses were identified: participant as patient, participant as adolescent, cultural adolescent, and participant as Hip-hop musician. These enabled the participants to explore their performance of selves in various ways. It was concluded that vocal improvisation in group music therapy enabled the expression of lack of resilience, as it received those feeling less resilient and provided them with safety and containment. It also offered the participants a means of instant coping within the various discourses that were identified. Vocal improvisation in this context also afforded the participants a space to adapt to their challenges as they explored various types of participation by learning from past experiences/ways of being, and adjust accordingly. Finally, the participants could transform through the changing relationships within the group itself, and how these social changes offered a social environment that afforded the resilience of the whole group. / Mini Dissertation (MMus)--University of Pretoria, 2017. / Music / MMus (Music Therapy) / Unrestricted

This qualitative research study explored the function of music therapy in the transformation of role identities for clients who had been in paediatric palliative care for an extended period of time. This study aimed to explore the value of music therapy in this transformation, as well as within the context of paediatric palliative care in South Africa. The research took place at a paediatric oncology unit at a local Cape Town Hospital where three participants were selected to receive music therapy sessions over a period of eight weeks. The session notes were analysed and six video excerpts were selected. Through the use of thematic analysis and coding hierarchies four themes (or “role palettes”) emerged from the data: the sick role palette, the mastery role palette, the resilient role palette and the theme of mutuality. It appeared that music therapy could have been a facilitator in the process of a shifting in role palettes. / Dissertation (MMus)--University of Pretoria, 2017. / Music / MMus / Unrestricted

Background: Feeding and swallowing difficulties (FSD) have been found in typically developing children as well as in children with complex medical conditions and developmental disabilities. These difficulties cause negative health consequences such as aspiration pneumonia, chronic lung disease, failure to thrive, prolonged hospital stay and even death. The early identification and management of feeding and swallowing difficulties is important as it prevents the negative effects on health and quality of life. Hence, there is a need for a validated screening tool to use in the general hospitalized paediatric population. Research Aims: The aim of this study was to validate the Feeding and Swallowing Questionnaire as a screening tool, in the paediatric population aged 0 – 2 years admitted to general medical wards. The secondary aim was to describe the FSD presenting in the paediatric population aged 0 - 2 years who are hospitalized in the general medical wards. Methodology: A prospective, descriptive, clinimetric design was utilized. A sample of 107 participants admitted to the general medical wards at Steve Biko Academic Hospital were included in the study. Participants’ feeding and swallowing was screened by a research assistant using the Feeding and Swallowing Questionnaire. After the screening, a clinical feeding and swallowing assessment was conducted for comparison, the assessment was conducted by the student researcher using the Clinical Feeding and Swallowing Assessment Tool. Results: There was a 27% FSD prevalence, with the majority of cases (92%) occurring in children under one year of age. One hundred and three children (63% male; median (IQR) age 5.2 (2.1 – 12.8) months) underwent screening and clinical assessment for feeding and swallowing disorders. The criterion validity of the Feeding and swallowing Questionnaire was established with a sensitivity of 88% and a specificity of 32%. Internal consistency was achieved with an acceptable Cronbach’s alpha of 0.79, and good inter-rater reliability (80%). Participants presented with feeding difficulties in all the phases of swallowing, while some participants had behavioural feeding difficulties. Those who had FSD had the following medical conditions: cardiorespiratory, neurological and gastrointestinal disorders namely acute gastroenteritis and liver disease. Feeding and swallowing difficulties were associated with increased mealtime duration (p=0.005) and supplementary oxygen support (p=0.03). Conclusion: The results confirm that the Feeding and Swallowing Questionnaire shows promising findings as a reliable and valid tool for the identification of FSD in the general hospitalized paediatric population. However, further research in other setting with general paediatric medical wards is required to increase the robustness of the screening tool.

Objective: To systematically review and summarize the available literature regarding the effectiveness and safety of biologics in the treatment of juvenile-onset systemic lupus erythematosus. Methods: PubMed was systematically searched for relevant literature (2012–2017 inclusive) using the following criteria: (1) patients diagnosed with juvenile-onset systemic lupus erythematosus (≤18 years at diagnosis); (2) treatment with any biological agent; and (3) outcome measures assessing effectiveness and safety. Systematic literature reviews, meta-analyses, randomized controlled trials, cohort studies, case control studies, cross sectional surveys and case-series with ≥3 patients were included. Independent extraction of articles by two authors using predefined criteria was performed. The quality of each study was assessed using CASP tools and Oxford CEBM Levels of Evidence. Results: Nine articles met inclusion criteria: six cohort studies, two case series and one pilot study, totalling 230 patients. All but one article reported the effects of rituximab, the other those of belimumab. Overall, patients had active disease refractory to standard of care regimens using corticosteroids and immunosuppressants. Available evidence for rituximab demonstrated improvements in disease activity, complement levels and anti-dsDNA titres accompanying a steroid-sparing effect. Conclusion: Rituximab can be considered an effective treatment in juvenile-onset systemic lupus erythematosus patients with severe disease manifestations and/or refractory disease. Based on current evidence, use of belimumab in juvenile-onset systemic lupus erythematosus patients cannot be recommended. The long-term safety of these biological agents remains uncertain. Further prospective studies, ideally robust randomized controlled trials, are urgently needed to obtain more accurate data on the effectiveness and long-term safety of rituximab, belimumab and other biologics in juvenile-onset systemic lupus erythematosus.

Bibliography: pages 113-118. / This study aims to investigate the use of hospitalized children's free drawings to assess the presence of post-operative pain in patients where language barriers previously prevented the use of existing pain assessment methods. This research involved 50 children ages 6 - 13 years, mostly from impoverished families, treated at the Red Cross Children's Hospital. The design is exploratory-descriptive in nature. The methodology was to collect drawings (110) on admission, after surgery (described as minor to moderate), when the children were expected to be experiencing pain, and also on discharge from hospital. These drawings were compared for picture content and children's responses to a combination of two scales developed and tested elsewhere (Word Graphic Scale and the Pain Ladder Scale), in an attempt to devise an alternative route to gauge subjective pain through drawings. Parental (44) and respondent (6) interviews provided information on parental reaction to children when in pain, and patient pain behaviour. Evidence suggests that children's free drawings can be successfully used in assessing the presence of pain but not the intensity thereof, and are recommended for use in the treatment process.

Background. Internationally, infectious diseases remain the greatest cause of morbidity among young children. Infectious disease burden is particularly high in low-to-mid income countries (LMIC). South Africa has a high prevalence of bacterial meningitis (BM), especially in children under the age of five. BM is also one of the commonest causes of acquired hearing loss in children. Given the fluctuating and transient nature of BM-related hearing loss, there is a need for an effective audiological protocol to facilitate timeous and appropriate audiological management. There is currently no universally accepted protocol for the audiological referral and management of children diagnosed with BM. Consequently, there is a need for an evidence-based protocol that will ensure timely referral and audiological testing of all children diagnosed with BM. Early identification of BM-related hearing loss in children will allow for timeous, appropriate audiological management and associated benefits, such as an option for placement in mainstream schooling. Objectives. This study aimed to explore the audiological management of children diagnosed with BM at a tertiary hospital in the Western Cape, South Africa, with reference to: patterns of referral for audiological assessment following a diagnosis of BM; current audiological protocols for the management of children diagnosed with BM. It was anticipated that this study would generate evidence that could potentially be used to develop appropriate protocols for the audiological management of children diagnosed with BM in LMICs, specifically South Africa. Methods. A retrospective record review was conducted using patient folders of children between 0 and 6 years who were treated for BM between May 2016 and May 2018. Data collection took place at Red Cross War Memorial Children's Hospital, which has a paediatric infectious diseases unit and an audiology department. Demographic and audiological data were recorded on a self-developed data abstraction form and data were analysed descriptively. Results. A total of 291 patient folders were accessed for review in this study. Of those, 40 (13.7%) met the inclusion criteria for the study and were selected for review. The majority of excluded folders were for patients not referred for audiological testing post-BM diagnosis. For those children referred to audiology, average referral time was 15 days (SD = 24 days) and each patient attended an average of only 2 audiology appointments. Otoacoustic emissions testing and tympanometry were the most commonly performed audiological tests in all children. BM-related hearing loss developed in 2/19 of these patients. All patients who were diagnosed with BM-related hearing loss were subsequently fitted with hearing aids – one of whom was fitted unilaterally with a hearing aid and the other, a cochlear implant candidate, was lost to follow-up. Conclusions. The key challenge experienced in this study was low referral rates to audiology (16%), which was followed by poor adherence to follow-up appointments – both of which were found to impede effective audiological management. Effective management and prevention of BM-related hearing loss pose challenges in LMICs. This study highlights the need for a well-defined referral pathway and an evidence-based protocol for the audiological management of children with BM within the South African health care setting. If this could be achieved, the early identification of hearing loss in these children has the potential to provide them with developmental, scholastic, and working opportunities in line with those of children with normal hearing.

‘First line healthcare’ is offered via telephone in many Western countries. The overall aim of this thesis is to describe Telephone Nursing (TN) from three viewpoints: telenurses, parents calling for their children, and operation managers. Four empirical studies were conducted. Telenurses described their work in five different ways: ‘Assess, refer and give advice to the caller’, ‘Support the caller’, ‘Strengthen the caller’, ‘Teach the caller’ and ‘Facilitate the caller’s learning’, which all constitute a TN ‘work map’. Authentic paediatric calls between parents and telenurses revealed that 73% of callers were mothers and children were aged between 5 days and 14.5 years. The top three contact reasons were ear and skin problems, and fever, with a median call length of 4.4 minutes. More than half of the calls resulted in referrals and 48% received self-care advice. The likelihood of fathers being given referrals as a result of their call was almost twice as high as that for mothers, while mothers were almost twice as likely to receive self-care advice as fathers. Parents described their degree of worry and trust that influenced their decisions whether to contact SHD or not. Their calls were carefully prepared, and the parent calling often depended on family routine. Parents reported to follow recommendations. Most relied upon their own intuition if further worried, but some indicated they would never seek healthcare unless it was recommended. Operation managers described four main goals of TN work: ‘create feelings of trust’, ‘achieve patient safety’, ‘assess, refer and give advice’, and ‘teach the caller’. Equitable healthcare was regarded as important, whereas health promotion was not considered as part of the goals. Conclusion: The studied TN viewpoints present concordance and discrepancies. Paediatric health calls appear mostly to be a woman-to-woman activity. Telenurses’ increased gender competence might increase TN safety. For that matter, telenurses’ collaboration with parents and making parents aware of holding the ultimate responsibility for their child’s condition is important. Goals of TN work and their relationship with healthcare obligations such as equitable healthcare and health promotion need further clarification. The viewpoints described in this thesis may contribute to the development of TN.

The work of nurses in the outpatient department belongs between discussed topics. The interplay and cooperation of all members of the medical team are especially important. Correct communication between all team members and communication with children and their accompaniment are also a matter of course. The aim of this diploma thesis is to map the work of a nurse in a comprehensive view in the outpatient area of the children's ward, the satisfaction of children and parents in the outpatient area of the children's ward and to suggest possible improvements for the outpatient sphere of the children's ward of České Budějovice a.s. The diploma thesis is processed by qualitatively quantitative investigation using semi-structured interviews, questionnaires and observations. The research group consisted of nurses, doctors, paediatric patients and their accompaniment at the children's ward, paramedics and the general public as well. The interviews were categorized and processed by the method of pencil and paper. Questionnaires were processed statistically. The hidden participating observation was focused on the collaboration and communication of nurses from outpatient department with other nurses, doctors, paramedics, children and their accompaniment; and it was also focused on the satisfaction of the children or their accompaniment at the outpatient department. The results of the work showed that the view of the work of the paediatric nurse is distorted both from the health care professionals and the general public, which means that the nurse is seen mainly as a nursing care provider. The results also showed the necessity of proper communication and knowledge of foreign languages. At the same time, the thesis was used to identify shortcomings or suggestions for changes in the paediatric outpatient department of the České Budějovice Hospital, including the satisfaction of patients and their accompaniment during visiting the department that depends on the time spent in the waiting room. Suggestions for improvement were drawn up, drafted and handed over to the children's ward management.