Background: Due to the poor outcomes achieved in acute myeloid leukaemia (AML) treatment, the Red Cross War Memorial Children's Hospital (RCWMCH) Oncology service changed from a BFM-87 based protocol to one based on MRC-AML15 in 2007. Rationale: This study was designed to assess the outcomes and treatment - related toxicity among children treated with RCWMCH protocol Rx 2071. Methods: This was a retrospective review of AML patients treated with Rx2071 between 2007 and 2012 at RCWMCH. Patients with acute promyelocytic leukaemia (APL) and Down Syndrome were excluded. Risk was assigned by cytogenetics. Good risk patients were those with t(8;21), t(16,16) and inv(16). Poor and standard risk included all other cytogenetics according to MRC-AML15. Data pertaining to toxicity was obtained from patient folders. Results: Thirty five children were treated on Rx 2071 during the study period. Males comprised 51.4% (18/35) and females 48.6% (17/35). Age at diagnosis ranged from 0.33 to 12.51 years with the median being 5.68 years. Follow-up from remission in the patients who survived ranged from 1 year 10 months to 9 years 1 month with a median of 62.5 months. Fifteen patients had favourable cytogenetics. Event free survival (EFS) for the good risk group was 85.6%. Twenty patients presented with standard/poor risk cytogenetics. Five patients were deemed poor risk with one having major karyotype abnormalities and four not achieving remission. The remaining fifteen were deemed standard risk by cytogenetics. EFS in this group was 32.4%. Two standard/poor risk patients were transplanted in first complete remission (CR1) and two patients were transplanted in second complete remission. (CR2) Patients had a median of four neutropaenic fevers, and required a median of eight packed cell and eleven platelet transfusions. There were 39 positive blood cultures. There were no chemotherapy related deaths. Discussion: The EFS for good risk patients is excellent but the EFS for standard/poor risk group is not on par with results being achieved in high income countries. The toxicity is not excessive on Rx2071. The results achieved on this protocol were superior to that of the previous BFM- based protocol. Conclusion: The results of this study support the continued use of Rx2071 at RCWMCH.

Background: The majority of central nervous system tumours in children are low grade gliomas (LGG). Long-term survival rates are high with a slow, progressive course. Tumour location and extent of resection affect outcome. Adjuvant therapy has an important role. Rationale: This study evaluated the demographic data of our patient population, the characteristics of LGGs in our setting, the time to presentation, and the role of adjuvant therapy including more targeted, novel biologic therapy such as BRAF/MEK inhibitors. The outcome of children with LGGs in our institution was assessed. Methods: A retrospective analysis was performed on all children < 15 years of age diagnosed with a LGG at Red Cross War Memorial Children's Hospital (RCWMCH) between 2001 and 2017. Data were collected from patient hospital folders, as well as paediatric oncology records and Groote Schuur Hospital radiotherapy records. Results: Eighty-six children aged 0.10-13.76 years (median 4.74 years) were diagnosed with LGGs between 2001 and 2017 at RCWMCH. Median time to presentation was 60 days. Sixtyfive patients (76%) were classified as having a WHO Grade I and 21 patients WHO Grade II (24%) tumours. Five patients (6%) had metastatic disease at presentation. The most common sites involved were the cerebellum (27%), hypothalamus (17%) and cerebrum (14%). The most common histology was juvenile pilocytic astrocytoma (JPA) (n=62; 73%). Gross total resection (GTR) was achieved in 21 patients (24%). Twenty-four patients (27%) received chemotherapy of which 11 patients progressed. Twenty-two patients received radiotherapy (26%), of which 3 patients progressed. The estimated 5-year overall survival (OS) was 86.8% and the estimated 5-year progression free survival (PFS) was 42.8%. The presence of a BRAFV600E mutation was checked in 4 patients since 2013, all had JPA histology, and all were negative. Discussion: Our patient demographic differed from published data with respect to younger age at presentation and female predominance. Time to presentation was relatively short. The majority of LGGs were cerebellar, with JPA histology being the most common. GTR was achieved in almost a quarter of patients. WHO Grade II histology did not significantly impact PFS and OS. Children < 3 years had a lower PFS compared to children > 3 years, but OS was similar. OS in this study was comparable to published data in developed countries, however PFS was slightly lower. Conclusion: Our outcomes are similar to those achieved in developed countries. Chemotherapy and radiotherapy are valuable adjuncts to treatment. The presence of a BRAF alterations should be tested in recurrent/progressive disease, to guide use of novel treatments.

Background: Chemotherapy has side effects that may interfere with food intake. Children suffering from a malignant disease are subjected to treatment with chemotherapy. They may therefore become at risk of undernutrition during the period of treatment. This in turn may increase the risk of infections, delayed therapy and influence the outcome of treatment. Few studies have investigated how children undergoing chemotherapy for cancer perceive food and eating. Attempts to improve food intake and the nutritional status require an understand-ing of how eating patterns are altered during chemotherapy in children. Study design: Dietary information and anthropometric data were collected after the initiation of chemotherapy in 14 children, consecutively admitted to the Paediatric Haematology and Oncology Unit at Umeå University Hospital. This initial study resulted in the establishment of more flexible mealtime routines on the ward. A follow-up study was conducted with another group of 11 children. Interviews were performed with a third group of 21 consecutively ad-mitted children, their parents and attending nurses. The focus was on the children’s own per-ception of and their parents’ and nurses’ attitudes to their food intake during hospitalisation. Recognition thresholds for the basic tastes were determined with 10 of the oldest of these children and 10 healthy controls. Results: Before introduction of new mealtime routines, the average daily oral energy intake during hospitalisation was 58% of the Swedish Nutrition Recommendations, SNR. The chil-dren had a significant weight loss up to three months after onset of chemotherapy. After the introduction of new mealtime routines, the average daily oral intake on hospital days was 61% of SNR and thus still lower than recommended despite efforts to serve palatable food on the ward. When enteral and parenteral nutrition was included, the energy intake came close to that recommended for healthy children, 91% of SNR. Both children and parents perceived that altered taste was an important cause of the children’s eating problems. The children also viewed food aversions, nausea and vomiting and pain as important causes, while the parents perceived nausea, food aversions and altered smell as significant factors. The nurses on the other hand, viewed nausea, the ward environment, and food rejection as a way of gaining some influence over the situation as important factors. The patients had significantly higher thresholds for bitter taste and significantly more patients made mistakes in taste recognition compared with controls. Conclusion and clinical implication: There seem to be changes both in the sense of taste as well as in the perception of food in children undergoing chemotherapy for malignant disease. Thus, single solutions such as providing a variety of “tasty food” in the hospital setting in order to improve food intake does not suffice for many paediatric cancer patients. The indi-vidual’s food preferences and aversions should be considered and combinations of oral, en-teral and parenteral nutrition support should be provided.

BACKGROUND: Palliative chemotherapy is cancer-directed therapy, which aims at stopping or slowing down the progression of the malignancy even though it may not have any potential for remission or cure. In South Africa, delayed diagnosis of childhood cancer is a common problem for a variety of reasons including lack of health care facilities, transport, information about the disease and delayed presentation due to traditional healer visits or other cultural issues. In patients who present with advanced cancer, or in patients with relapsed cancer without realistic hope of cure, palliative chemotherapy can be offered in an attempt to manage symptoms, improve quality of life and prolong meaningful survival. OBJECTIVES: This research study evaluated South African paediatric oncologists' perspectives and practices regarding the use of chemotherapy in patients with cancer with no realistic hope of cure. The second part of the study described the use of palliative chemotherapy in patients who received treatment at the Steve Biko Academic Hospital Paediatric oncology unit. DESIGN & METHOD: An online survey was conducted among paediatric oncologists in South Africa. The main aims of the questionnaire were to assess paediatric oncologists' considerations around the use of palliative chemotherapy, and then focus on the most recent patients treated with palliative chemotherapy. For the second part of the study, a file review was done of deceased patients who died in the period from January 2012 to December 2018 and who had received palliative chemotherapy as part of their cancer management. We reviewed diagnoses, palliative chemotherapy regimens, timing of initiation and stopping palliative chemotherapy, and whether end of life decisions and discussions were documented. RESULTS: A total of 41 participants completed the survey, giving a response rate of 89%. The majority of the paediatric oncologists were either neutral or agreed that palliative chemotherapy should be considered. The most important treatment aim was to improve quality of life of the patient (92.7% of respondents). The most important considerations when prescribing palliative chemotherapy was to minimise toxicity of the chemotherapy regimen (4.56 mean, SD=0.5 utilising a 5 point scale where 1=not important to 5=very important), and the effectiveness of the chemotherapy (4.37; SD=0.48). Only 19.5% of patients received treatment primarily because parents requested it. According to the oncologists polled, the key considerations were largely achieved in the most recent patient treated with palliative chemotherapy. Individual opinions and preferences concerning recommending palliative chemotherapy differ between paediatric oncologists. Of the 305 patient deaths recorded in the study period, a total of 74 patients had received palliative chemotherapy and were included in the file review. The most common diagnoses were neuroblastoma (18.2%), retinoblastoma (15.6%) and osteosarcoma (14.3%). At the time of diagnosis, the median age of the patients was 6.0 years (range 0.3 to 17.6 years). In 47 patients (63.5%) the disease was deemed incurable at first diagnosis and palliative chemotherapy given from the onset of treatment, while 27 patients (36.5%) were given palliative chemotherapy at relapse. The median time from last palliative chemotherapy to death was 30 days (range 0-742 days). The main documented aim of palliative chemotherapy was to improve symptom control (97.3%) while parents' opinion played an important role in 32.9% of cases. About half of the patients (41 of 74, 55.4%) had documentation of symptomatic improvement. CONCLUSION: Although the overall attitude towards the use of palliative chemotherapy is positive, there is great inter-individual variation between oncologists in opinions and experience. The lack of empirical data to justify recommendations about palliative chemotherapy remains a problem, and the researcher hopes that this study will spark productive discussion and planning towards more structured use of palliative chemotherapy in children with cancer in South Africa. This study shows that many decisions around end of life care and decision-making could be better researched using a quantitative, prospective, interview-based approach. Repeated measurements of the child and family's quality of life and its associations with palliative chemotherapy should be a research priority in future.

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

Sammanfattning Bakgrund Varje år nyinsjuknar ca 300 barn i cancer vilket påverkar hela familjens vardag. Barnen längtar efter den normala vardagen och det är viktigt att föräldrarna och barnet får information och kunskap om sjukdomen. Barn ska vara delaktiga i sin vård och barnsjuksköterskas uppgift är att skapa en långvarig relation där bemötandet är nyckeln till relationen. Syfte Att beskriva barns (3-8 år) och deras föräldrars erfarenheter av barnsjuksköterskans bemötande inom barnonkologisk omvårdnad 36 månader efter diagnostillfället. Metod Studien är kvalitativ med intervju som datainsamlingsmetod. En deduktiv innehållsanalys enligt Elo och Kyngäs har använts där Swanssons omvårdnadsteori varit utgångspunkt. Resultatet Barnen och föräldrarna upplever trygghet när de blir vårdade av barnutbildad personal. De upplever att de har en bättre kontroll och ett bättre bemötande än de som inte är barnutbildade. De vill vara inkluderade i vården och få stöd av barnsjuksköterskan under och efter behandlingen. Föräldrar vill få information om barnets tillstånd och de vill vara engagerade i barnets omvårdnad på egna villkor. Diskussion Sjuksköterskans bemötande av barn samt föräldrar är viktigt vid barn onkologisk omvårdnad. Barnsjuksköterskans kunskap vid bemötande av barnet och familjen har stor betydelse och barnutbildad personal är önskvärt av föräldrarna. Barnsjuksköterskor behöver förstå hur barnen och deras familjer upplever vården och vilka behov de har både under och efter behandling för att främja hälsa och välbefinnande.

Childhood cancer is a life-threatening disease with a profound impact on the family. Treatment side-effects and accompanied dietary difficulties are for example severe stressors, as appropriate nutrition is important for the treatment success and quality of life. In addition, (unhealthy) dietary patterns established in childhood tend to maintain in survivors. Parents are key players in feeding and establishing these pat-terns, though, systematic research on how parents experience these dietary difficulties is limited. This study aimed at exploring parental experiences of children’s dietary changes and difficulties during cancer treatment and after completion: what feelings do parents experience regarding their child’s dietary changes and difficulties, what feeding strategies to they apply to handle these difficulties, and how did they experience professional support and what are parental support needs. A systematic literature review was conducted and resulted in 21 suitable articles. The children were 0-21 years old, had various types of cancer, and received various types of therapy. Findings showed that parents reported many dietary changes (e.g. increase or decrease in food intake) and associated symptoms (e.g. nausea, changed tastes) during and after the cancer treatment course. Parents reported mainly negative feelings towards these dietary difficulties (e.g. distress and anxiety) and applied a wide range of behavioural feeding strategies, both negative (e.g. pressure to eat) and positive (e.g. provide healthy food) strategies. Parents also used complementary and alternative medicine. A high need for informational support regarding eating and feeding was expressed by parents during treatment, a need for emotional and practical support to a lower extent. These results showed how frequent and profound eating and feeding difficulties are in the childhood cancer and survivor population, and their (negative) impact on parents. Parents consequently need more support: they need oral and written information to set realistic expectations and install appropriate feeding strategies. This is important for the child’s nutritional status and general health both during and after cancer.

This mini-dissertation is structured as a clinical inquiry based on a detailed analysis of music therapy work with a wide open group at Kalafong Hospital’s paediatric oncology ward. The focus of this inquiry is to characterise ‘working moments’ within a wide open group music therapy context, that appears to be impacted by noise levels, group structures, and a generally busy and unpredictable physical environment. In addition, this clinical inquiry identifies clinical skills employed during ‘working moments’ with a wide open group. Research methods of description, coding, categorising and theme identification are applied in the analysis of three video excerpts and corresponding sessions’ session notes. The chosen excerpts are based on a working definition of ‘working moments’. The findings of this clinical inquiry suggest that characteristics of wide open groups include the following: Breaking social isolation and Shifting from illness to health. It furthermore identifies the roles and tasks of the therapist in a wide open music therapy group. This mini-dissertation also includes a proposed research project that stems directly from the clinical inquiry. / Dissertation (MMus)--University of Pretoria, 2007. / Music / MMus / Unrestricted

Objective: Recent evidence suggests that illness perceptions in paediatric patients and their parents may differ, with parents holding more negative views compared to their children. Little is known about illness perceptions of very young patients and their parents. This study investigates illness perceptions in paediatric cancer patients aged 4–18 years and their parents in acute treatment or follow‐up care, distinguishing patients by age (4–11, 12–18) and stage of medical treatment. - Methods: N = 45 patient–parent dyads in acute treatment and n = 95 dyads in follow‐up care were examined. Parents and older children aged 12–18 years completed the Illness Perception Questionnaire—Revised (IPQ‐R) and younger children aged 4–11 years were examined using an age‐adapted hand puppet interview containing the IPQ‐R questions. Difference scores of illness perceptions (symptoms, timeline‐acute/chronic, timeline‐cyclical, personal control, illness coherence, consequences, emotional representations) between children and parents were tested for significance using Wilcoxon signed‐rank tests. - Results: Overall, parents perceived more symptoms associated with their child's illness/treatment than the children themselves. In acute treatment, younger children indicated more negative and older children more positive views regarding chronicity than parents. Younger children held less negative views on consequences, and all children reported less negative emotional representations than parents. In follow‐up care, all children held less negative views on consequences and emotional representations. Older children reported less negative views on chronicity, cyclicity and illness coherence. - Conclusion: Differences in illness perceptions of paediatric patients and their parents should be considered during and after treatment/medication and psychosocial care to support illness coping in person‐ and family‐centred interventions.

Bakgrund. Föräldrar till barn som har cancer upplever en livssituation som präglas av osäkerhet och oro och de ställs inför sociala och känslo­mässiga utmaningar. Jämfört med föräldrar till friska barn, upplever de också högre stress och drabbas i större utsträckning av posttraumatiska stres­symptom. Trots att information om barnets sjukdom är ett centralt behov för föräldrarna, upplever de otillfredsställelse med den information som ges. Syfte. Syftet med denna avhandling var att inom barnonkologisk vård beskriva vårdares och föräldrars upplevelser av information, studera deras inbördes interaktion samt beskriva upplevelser och effekter av en intervention för personcentrerad information till föräldrar. Metod. I delstudie I–III användes fokusgruppintervjuer (I, II), individ­uella intervjuer (II, III) och deltagande observationer (III). Deltagarna bestod av 20 vårdare (I), 14 föräldrar till barn med cancer (II) respektive 25 vårdare och 25 föräldrar (III). Data analyserades med kvalitativ innehållsanalys (I, II) och diskurspsykologi (III). I delstudie IV testades en intervention för per­son­cen­tre­rad information på åtta föräldrar med hjälp av en experimentell single-case-design. Data samlades in med kvalitativa intervjuer och internetenkäter. Upplevd stress, kroppsliga symptom på stress, ångest, nedstämdhet och tillfredsställelse med information var utfallsmått. Resultat. I delstudie I bestod resultatet av två teman: anpassa mängden information till föräldrarnas behov, som handlade om skillnader i hur mycket information som gavs till föräldrarna utifrån vårdarnas bedömning av föräldrarnas behov, och navigera i en vag struktur, som handlade om brister i ansvar, miljö, tajming och språk när informationen lämnades. I delstudie II konstruerades två teman. Känna sig bekräftad som en viktig person handlade om att föräldrarna kände sig trygga, kunde hålla hoppet uppe och fick stöd från andra föräldrar. Temat var mer framträdande under behandlingens tidiga skeden. Det andra temat var känna sig som en objuden gäst vilket handlade om att kännas övergiven vid viktiga milstolpar, att tvingas tjata sig till information och att belastas av att själv behöva informera andra inom sjukvården. I delstudie III använde vårdarna tolkningsrepertoarer som var barn-, föräldra- eller familjeorienterade, vilket avspeglade deras primära fokus i interaktionen. Föräldrarna använde tolkningsrepertoarer som talesperson, observatör eller familjemedlem. Hur dessa kombinerades inbördes påverkade interaktionen. I delstudie IV erfor föräldrarna stor tillfredsställelse med den per­son­cen­tre­rade informationen och upplevde att de hade nytta av att på egen hand få diskutera barnets sjukdom och ställa frågor de annars inte skulle ställt. Interventionen visade ingen effekt på stress eller kroppsliga symptom på stress, ångest och nedstämdhet. Slutsatser. För att förbättra information till föräldrar som har barn med cancer är det en central uppgift att bedöma hur mycket och vilken information som ska ges vid varje tillfälle, att uppmärksamma att föräldrarna kan ha andra informationsbehov än barnet och att möten med föräldrarna ska ske i lugn och ro samt att organisera vården så att ansvaret är tydligt. I synnerhet bör det ske förbättringar kring det som föräldrarna upplever som viktiga milstolpar under barnets sjukdomstid. Interventionen för per­son­cen­tre­rad information uppskattades av föräldrar som har barn med cancer men effekten på föräldrarnas psykosociala välbefinnande behöver utforskas ytterligare. / Background. Parents of children with cancer experience a life situation characterised by uncertainty and worries, and they face ongoing social and emotional challenges. Compared to parents of healthy children, they also experience increased levels of perceived stress and they suffer to a greater extent from post-traumatic stress symptoms. Even though information about the child’s disease is crucial for parents, they still experience low satis­faction with the information given to them. Aim. The aim of this thesis was to, within the field of paediatric oncology care, describe health care professionals’ and parents’ experiences from infor­mation, study their joint interaction and describe experiences and effects from an intervention based on person-centred information to parents. Methods. For study I–III, focus group interviews (I, II), individual inter­views (II, III), and participant observations (III) were used. Participants were 20 health care professionals (I), 14 parents of children with cancer (II) and 25 health care professionals and 25 parents (III). Data were analysed by qualitative content analysis (I, II) and discursive psychology (III). In study IV, an intervention for person-centred information was tested on 8 parents using a single-case experimental design. Data were collected with qualitative interviews and web questionnaires. Outcome measures were perceived stress, physical symptoms from stress, anxiety, depression, and satisfaction with information. Results. In study I, the analysis resulted in two themes, Matching the amount of information to the parents’ needs, which dealt with differences in the amount of information provided to parents according to the health care professionals’ assess­ment of parental needs, and Navigating through a vague structure, which was about shortcomings in responsibilities, setting, timing, and language when parents were informed. In study II, two themes were constructed. Feeling acknowledged as a person of significance was about feeling safe and secure, having one’s hopes supported and getting relief from other families. This was accentuated early in the treatment trajectory. Feeling like an unwelcome guest was about feeling abandoned at important milestones, feeling forced to nag for information and being burdened by informing others. In study III, the health care professionals used interpretative repertoires that were child, parent, or family oriented, which mirrored the primary focus of the inter­action. Parents used repertoires as a spokesperson, an observer, or a family member. The combination of the repertoires steered the interaction. In study IV, parents reported a high satisfaction with the person-centred information intervention and perceived benefits from having their own time to discuss the child’s disease and pose questions that they otherwise would not have an opportunity to ask. No effects from the intervention were demon­strated on perceived stress, physical symptoms of stress, anxiety, and depressive mood. Conclusion. To improve information to parents of children with cancer, a central task is to assess the amount of and what information given to parents, pay attention to possible differences in infor­mation needs between parents and children, as well as to organise the care so that the respon­si­bilities are clear and that parents are met in a calm setting. Improvements at important milestones during the illness period should be pri­ori­tised. A person-centred information inter­ven­tion is perceived as bene­ficial by parents, however, its effect on perceived parental stress has further to be investigated.