Background: Despite the increased presence of clinical psychologists in paediatric services, including palliative care teams, there has been little research into their experience of working with children with life-limiting conditions. Existing studies have tended to focus mainly on the experience of medical professionals working in this area. Such studies have found that working with life-limiting conditions and child death has a significant impact on medical professionals, causing stress, burnout and feelings of professional failure. As clinical psychologists have a role in supporting the emotional needs of children, families and staff teams, it is important to explore their experiences, the impact that such work has on them, and any potential personal and professional implications. Aims: After identifying the above gap in the research, this study aimed to explore clinical psychologists‟ experiences of working with children with life-limiting conditions. Method: Semi-structured interviews were conducted with seven qualified clinical psychologists who were working in hospital settings with children with life-limiting conditions. The transcripts of the interviews were then analysed using Interpretative Phenomenological Analysis (IPA). Results: Three superordinate themes emerged from the analysis: „The meeting of two worlds: When psychology and medicine converge‟, „Nobody is immune: Facing the challenges of working of life-limiting conditions‟ and „Balancing the rough with the smooth: Finding a way to manage‟. Implications & conclusion: Participants experienced challenges in having to adapt to a medical world and in facing emotional impacts however, they also reported positive experiences from their work. The study raised many implications for clinical practice including the need to potentially help psychologists to prepare for the possible changes required when practicing in a hospital setting. This could perhaps be incorporated more into clinical training or be provided as in-house training when starting in the post.

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This study employs conversation analysis (CA) and membership categorization analysis (MCA) in an exploration of the interactional organization of talk between doctors and the mothers (or the female guardians acting as “proxy mothers”) of HIV-positive child patients being treated at a paediatric hospital in the Western Cape, South Africa, in 2003. The analysis focuses on how the HIV paediatric consultation is co-constructed between the doctor and the mother/guardian, and how interactional choices on the part of the participants shape the course of the consultation. Specific attention is placed on how participants orient to, hear, respond to and coconstruct the category of “mother”, along with the emergent inferences of what constitutes “good mothering” in the context of pursuing the wellbeing of the HIV-positive child who - as it emerges in certain cases - has evidently been infected by the mother in the first instance. As its core focus, this study examines how orienting to “good mothering” is done - in a moment-bymoment, collaborative and co-constructed manner – in the immediate course of the doctor/mother/guardian consultation. This involves considering the interplay of shifts in orientations to “motherly responsibility” and “doctorly responsibility”, and how these shifts are collaboratively activated, negotiated and responded to, as the consultation proceeds.

Background: Many infants in developing countries are faced with poverty, poor nutrition, limited access to healthcare, and exposure to communicable diseases that place them at risk for negative developmental consequences. Dysphagia is estimated to occur in 25-40% of normally developing, and 80-90% of infants with disabilities. International studies report the common causes of dysphagia to be of gastro-intestinal and neurological origin, yet limited research exists into the profile of paediatric dysphagia within developing contexts. Objective: To describe the profile of paediatric dysphagia in state hospitals, Gauteng. Methods: By means of a retrospective record review, this study investigated paediatric dysphagia (0-18 months) in state hospitals, Johannesburg. Hospital records of 263 infants with feeding impairments were analysed using descriptive statistics, phi correlations and logistical regression. Results: Findings revealed 214 underlying aetiological combinations whereby 65% (n=171) of infants experienced dysphagia secondary to a systemic illness, predominantly communicable diseases. The health professionals, management strategies and procedures employed in the assessment and intervention of paediatric dysphagia were context specific and related to the aetiological and social factors influencing the infants. Conclusion: Results differ significantly to those reflected in studies from developed countries. Of concern is the fact that 65% of infants experienced dysphagia secondary to a systemic illness, since with adequate nutrition, sanitation and health care, these conditions are potentially preventable. By improving social circumstances, the effects of systemic illnesses may be minimised, and may consequently decrease the number of infants affected by dysphagia. This implies that paediatric dysphagia in South Africa is no longer merely a health dilemma, but one which involves basic human rights.

Objective: The appropriate application of audiological measures during paediatric hearing aid (HA) fitting ensures the fitting is effective and provides speech audibility across the frequency range. Audiological assessment may include both behavioural and objective measures, such as auditory brainstem response (ABR) and auditory steady-state response (ASSR). ABR and ASSR measures however do not have a 1:1 correlation with behavioural measures, and correction values need to be applied to estimate behavioural thresholds prior to HA fitting. No study has previously described how South African audiologists are utilising ABR and ASSR results during paediatric HA fitting. This study aimed to describe the current South African audiological clinical practice for paediatric HA fitting, with specific reference to the application of ABR and ASSR measures. Design: The study employed a quantitative, non-experimental, descriptive, cross-sectional survey research design. Study sample: Thirty-four personal interviews with audiologists were completed, seven within the private health sector and 27 within the public health sector. Results: Results indicated that limited departmental protocols exist and adherence to available protocols was questioned. There was a lack of consensus regarding the application of correction values to ABR and ASSR measures for HA fitting and the values utilised often differed significantly from recommended guidelines. There appeared to be an over-reliance on electrophysiological measures for paediatric audiological assessment, as well as a lack of adherence to recommended age-appropriate assessment guidelines. Conclusion: Findings suggest the need for promoting improved clinical practice and knowledge within the area of paediatric audiology in South Africa. The need for the development of nationally-agreed guidelines was highlighted.

Mammalian neural stem cell (NSC) lines provide a useful experimental model for basic and applied research across stem cell and developmental biology, regenerative medicine and neuroscience. NSCs are clonally expandable, genetically stable, and easily transfectable - experimental attributes compatible with functional genetic analyses. However, targeted genetic manipulations have not been reported for mammalian NSC lines. Here, we deploy the CRISPR/Cas9 technology and demonstrate a variety of diverse targeted genetic modifications in both mouse and human NSC lines such as: targeted transgene insertion at safe harbour loci; biallelic knockout of neurodevelopmental genes; knock-in of epitope tags and fluorescent reporters; and engineering of glioma driver mutations at endogenous proto-oncogenes. Leveraging these new optimised methods, we explored gene editing to model the earliest stages of paediatric gliomagenesis in primary human NSCs. Our data indicate that oncogenic mutations in histone H3.3 play a role in NSC transformation and may operate through suppression of replication induced senescence. By comparing cellular responses of NSC cultures from different compartments of the developing brain, we also identify differences in susceptibility to distinct H3.3 mutations that mirror the disease etiology. Altogether, our findings indicate that CRISPR/Cas9-assisted genome editing in NSC lines is a versatile tool to explore gene function in CNS development and cancer biology. Our project resulted in the creation of valuable human cellular models of paediatric gliomagenesis, which will allow us to further our understanding of the disease and carry out cell based drug discovery projects.

Paediatric acquired brain injury (pABI) can lead to an array of long term physical, cognitive, emotional, and behavioural difficulties. Due to the long-term sequelae of more severe pABI, it presents a significant challenge to the child’s family. Studies have suggested that social support can positively impact psychological adjustment following a stressful life event, and can aid personal resilience. There remains limited qualitative investigation of subjective family and parental adjustment experiences following pABI. Researchers have argued for future research that include the experiences of parents who have children younger than 16 years old, and are able to shed light on the individual experiential journey of parents. The current study used interpretative phenomenological analysis (IPA) to explore to the experiences of adjustment and social support of parents of children with pABI. Purposive sampling was used to recruit 10 participants who were individually interviewed. Five superordinate themes emerging from the data were identified: 1) Lives changed forever, 2) Sense of self, 3) Interaction with services, 4) The psychological experience, 5) Coping and adjustment. Relevant literature and implications for future research and clinical practice are discussed.

A qualitative descriptive approach was undertaken to explore the experience of eight registered nurses and two hospital play specialists who care for children hospitalised with burn injuries. The research participants were recruited from a paediatric ward that offers centralised specialty care to children with burns. Collected through face-to-face interviews, the participants' stories were tape-recorded and transcribed verbatim using a process for analysis informed by van Manen, (1997b).Emerging out of the data was the over-arching theme of 'passionate dedication' that shows the nurses and hospital play specialists genuine compassion and commitment to meet the needs of the children with burns. The findings of the study reveal that the participant's dedication is shaped and determined by a dynamic process that involves having professional integrity and in-depth knowledge of caring for children and burn management. The nurses and the hospital play specialists have a common understanding of what their role entails and the skills required to provide quality care and support to the children and the children's family. On a personal and professional level the participants encounter several challenges in this care context that are physically and emotionally overwhelming. Despite becoming overwhelmed the participants are revealed as being resourceful and resilient in their aptitude to find ways that enable them to cope and get through.This study supports international literature that suggests that caring for children with burns is equally rewarding, as much as it is physically and emotionally demanding. The implication in this study for the organisation is to seriously consider issues regarding productivity and efficiency of the workforce with acknowledgement that nurses and hospital play specialists cannot do this emotional work without effective systems of support in place. With the help of team leaders, managers and educators, the organisation will need to consider ways to monitor the job satisfaction of their staff. Furthermore, reinforce existing comprehensive measures, such as mentorship and clinical supervision programmes to encourage the retention and well-being of all staff, at all stages of their career on the children's burn ward.

Very little is known about the effects of paediatric traumatic brain injury (TBI) on prospective memory, the memory for future intentions such as remembering to post a letter in the morning or do homework. The main aim of this thesis was to redress that shortcoming in the literature. To investigate the effects of paediatric TBI on prospective memory as reliably and fully as possible, the study of children and adolescents with brain injuries was preceded by a developmental study. Given that the process of recovery from brain injury is imposed on the ongoing process of development, it is important to understand more about the normal developmental trajectory of prospective memory first of all. Study 1 compared the prospective-memory performance of 88 normally developing children, adolescents and young adults. The main task was computerised, and its design was influenced by a prefrontal-lobe model because prospective memory is believed to be mediated by the prefrontal regions of the brain. Variables associated with prefrontal-lobe capacity were manipulated: the cognitive demand of an ongoing task, and the importance of the prospective task. Results of Study 1 found that children remembered to respond to fewer prospective cues than adolescents or adults, but that adolescents and adults remembered similarly. Further, the differences between the children's performance and the adolescents' and adults' widened as the cognitive demand of the ongoing task increased. However, the effects of increasing the cognitive demand did not vary between the adolescents and adults. It made no difference to anyone's performance whether the importance of remembering the prospective cues was stressed or not. On the other hand, performance on executive functions, as measured by the Self-Ordered Pointing Task (SOPT), the Stroop Colour Word Interference Test (Stroop), and the Tower of London (TOL), which are also believed to be affected by prefrontal capacity, produced the same age effects as were produced on the computerised prospective-memory task. Further, performance on the SOPT and Stroop predicted performance on the high-demand level of the prospective-memory task. Study 2 compared 34 children and adolescents with TBI with the non-injured children and adolescents from Study 1 on the same tasks. Results revealed that overall those with TBI had poorer prospective-memory performance than their non-injured peers. However, a different pattern of impairment was evident in the children than in the adolescents. Specifically, the children with TBI performed similarly to their non-injured peers, but the adolescents with TBI were significantly worse than the non-injured adolescents. This trend was most noticeable as the cognitive demand of the ongoing task increased. Further, the age and injury effects were reflected in the performances on the executive-function tests, and the TOL predicted performance on the high-demand, prospective-memory task in those with TBI. Study 3 aimed to examine the ecological validity of Study 2, by investigating whether the impairments in prospective memory in young people with TBI measured quantitatively, were matched with qualitative data. Twelve parents of children and adolescents with mild to severe TBI were interviewed about whether or not their children's injuries impacted on their memory (retrospective and prospective) in everyday life. Results showed that in general most children suffered memory losses as a result of their brain injuries, and that prospective-memory loss caused particular hardships for the children and their families. Taken together, the results of the current research revealed that the development of prospective memory reaches a peak of maturity in adolescence, and that adolescents with TBI show greater decrements in prospective memory than adolescents without TBI, but that this pattern is not evident in children, where those with TBI were not significantly different from those without. These findings give support to the prefrontal-lobe model of prospective memory by showing that prefrontal maturity, which reaches a peak during adolescence, reflects the prospective-memory performance of healthy adolescents, and prefrontal injury, which is very common with TBI, shows the effects of deficits more during adolescence than in earlier years when the prefrontal regions are not yet fully developed. Study 3 showed that impairments in prospective memory that result from TBI translate into disabilities in the real world. As a follow up it is recommended that rehabilitation strategies be designed to assist young people with prospective-memory impairments adjust better to school and the demands of everyday living. The prefrontal-lobe model should guide the design of such strategies.

The purpose of this study was to determine the indicators of customer satisfaction and service success of a newly established paediatric outreach nursing service. Referring agents and care recipients were both consumers of the paediatric outreach nursing service. Both groups of consumers were surveyed to determine their satisfaction with the service delivery. Two satisfaction survey tools were developed to measure customer satisfaction. The tools were piloted and refined prior to distributing them. Both tools had a series of closed-ended questions and 3 open-ended questions. Eight service indicators were developed. These were designed to test the effectiveness of the service provided. The service indicators were piloted over two periods of three months and then modified based on the findings of the pilot period. The Paediatric Outreach Service (POS) is a positive service model for health care delivery. The survey results indicated that stakeholders were generally satisfied with the service delivery. When measured against service indicators that were developed for POS, the service performance was above average, with some opportunity to improve practice. Underpinned by a family-centered framework, POS has the capacity to empower children and their families in the planning and implementation of a management plan for the child’s illness. Such empowerment may lead families to practice better healthcare, develop better health-seeking practices and ultimately lead to healthier children. The results from this study has implications for nursing practice. The data obtained from this study may be useful to service providers considering commencing a paediatric outreach nursing service. Data may also be useful for existing service providers to use in order to review the aspects that consumers value against the service they currently provide. Keywords ambulatory care; paediatrics; home-nursing; community; evaluation; satisfaction; success; indicators