Psychosocial oncology is well established in Europe and in America. Similar initiatives are, however, rare in Africa. On the African continent, psychosocial services are scarce and often a luxury although the importance of psychosocial variables as mediators in the paediatric cancer outcomes have been widely recognised. The apartheid system in South Africa was instrumental in causing major disparities in health, education and socioeconomic status. In order to provide a more holistic service it becomes imperative to assess not only the psychosocial needs and resources of both children and parents who endure the disease but also the influence of socio-demographic variables such as race, educational level and socioeconomic status. This research was limited to collecting baseline information on how parents and children communicate about the illness, emotional responses and the psychological resources that they utilise to deal with the childhood cancer trajectory. The study group consisted of 100 children between the ages of 5 and 16 years who had been diagnosed with cancer and one or both parents of those children. Data was collected through semi-structured interviews and standardised self-report measures. The results of the study indicate that both parents and children did not suffer disabling psychopathology, but certainly evidenced symptoms of depression and anxiety indicative of adjustment difficulties. Communicating about the illness was generally limited to physiological aspects of the disease and medically related matters, while emotional issues were rarely articulated. Children, parents and their siblings relied heavily on medical staff for their information needs. The age of the child was a significant factor with reference to amount and complexity of information imparted to children: adolescents were given more information about the treatment and prognosis; while younger children were given a limited amount of information. Race, socioeconomic status and educational levels of parents not only influenced the meanings and beliefs families developed around the cancer experience, but also the manner in which they expressed their emotions and the coping strategies that they employed. / Thesis (Ph.D.)-University of KwaZulu-Natal, Durban, 2004.

Orientador: Gimol Benzaquen Perosa / Resumo: O diagnóstico de câncer infantil promove vivências e enfrentamentos específicos, que podem interferir na adesão aos procedimentos e expectativas de cura. Este estudo transversal, de delineamento quali-quantitativo, visou identificar como as crianças com câncer, com idade entre seis e doze anos, em tratamento quimioterápico, explicavam a causa, os sintomas, e prevenção de doenças comuns e de sua própria doença, o procedimento quimioterápico, a possibilidade de cura, assim como os comportamentos de enfrentamento (coping) que utilizavam no contexto da quimioterapia. O estudo foi realizado em dois centros de referência para o tratamento de câncer pediátrico do centro-oeste paulista. Os cuidadores forneceram os dados sócio demográficos e outros necessários para calcular o risco psicossocial da família. As crianças responderam a uma entrevista sobre causas, sintomas e tratamento das doenças em geral e sobre o câncer e tratamento quimioterápico e a um questionário sobre os comportamentos de enfrentamento utilizados para lidar com a quimioterapia. Elaboraram, também um desenho sobre sua percepção do procedimento, a partir da técnica de desenho-estória. Observou-se que a maioria das famílias se concentrava na categoria risco psicossocial alvo (moderado), especialmente as com baixa escolaridade, problemas financeiros, preocupação excessiva e percepção de que a criança estava sofrendo muito. Ao explicar a doença, as crianças tiveram facilidade em nomeá-la e diferenciar o câncer de outras doenças. A quimioterapia representava a possibilidade de cura, mas, também um procedimento doloroso, com longas esperas, enjoos e desânimo. As estratégias de enfrentamento mais utilizadas pelas crianças frente à quimioterapia foram a distração e solução de problemas. Houve diferenças nos comportamentos de enfrentamento quanto ao sexo, idade e tipos de câncer: meninas... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract:Child cancer diagnosis promotes specific livings and hardships, that may infer in the consent to the procedure and healing expectations. This qualitative and quantitative transversal study, aimed to identify how children with cancer, aging between six and twelve years old, explained the causes, symptoms, and the prevention of common diseases and their own, the chemotherapy procedure and the disease's cure possibility as well as their coping behavior inside the chemotherapy context. The study has been conducted in two reference of pediatric cancer treatment centers in São Paulo state's mid-west region. The caregivers provided social, demographic and all other important data necessary to calculate the family's psychosocial risk. Children answered to an interview about the causes, symptoms and the treatment of the diseases in general and about the cancer and its chemotherapy treatment and a questionnaire about the coping behaviors used to deal with the chemotherapy. They also elaborated a drawing based on their perception of the procedure, using the drawing-story technique. It was observed that mostly of the families were concentrated in moderate psychosocial risk, especially the ones with low education, financial problems, excessive concern and perception that the child was suffering, Children found it easy to name and set apart cancer from other diseases. Chemotherapy represented a cure possibility but also a painful procedure, with long waiting, nausea and dismay. The most coping strategies used by the children facing chemotherapy were the distraction and problem solving. There were differences in the coping behaviors regarding gender, age and cancer types: girls referred to seeking more interpersonal support, younger children referred less adaptive behavior than the older children and a much larger percentage of children with leukemia referred discouragement when compared to children with... (Complete abstract click electronic access below) / Mestre

Este trabalho tem como objetivo investigar sentidos e significações que a criança com tumor de sistema nervoso central, que já passou pelo tratamento oncológico, tem da doença e das alterações corporais aparentes decorrentes do tumor e seu tratamento. Isso porque, em sua maioria, essas crianças apresentam sequelas visíveis no corpo ocasionadas pela doença e seu tratamento oncológico. Para a realização deste trabalho, recorre-se a uma pesquisa bibliográfica, na área da Oncologia Pediátrica, Psicologia e Psicanálise, e uma pesquisa de campo. Através de uma entrevista individual com onze crianças, todas pacientes do Ambulatório de Oncologia Pediátrica do Hospital Santa Marcelina / São Paulo, é possível refleti sobre alguns temas surgidos nas falas dos pacientes. A interpretação desses temas está apoiada em conceitos da psicanálise Freud-lacaniana e abarca a angústia, o luto, a castração e a imagem inconsciente do corpo. Assim, este trabalho mostra a importância de proporcionar a criança construir sua própria história da doença para poder lidar melhor com seus efeitos. Reflete ainda sobre a especificidade de um trabalho psicanalítico nas equipes multidisciplinares que acompanham os pacientes fora de tratamento oncológico. O psicanalista, ao atuar, deve manter a singularidade do seu trabalho e, quando necessário, fazê-lo junto à equipe / This work has as purpose to investigate senses and meanings that the child with central nervous system tumor, which has already gone through oncological treatment, has of the disease and the visible body alterations due to the tumor and its treatment. This was aim because, in most cases, these children show visible sequelae on their bodies caused by the disease and its oncological treatment. In order to accomplish this work, it is used a bibliography research, over the areas of pediatric oncology, psychology and psychoanalysis, and a field research. Through one individual interview with eleven children, all of them patients from the pediatric oncology ambulatory from Santa Marcelina Hospital / São Paulo, is possible to reflect about some themes brought by the patients\' speeches. The interpretation of these themes is supported in concepts from Freud-lacanian psychoanalysis and embraces the angst, the mourning, the castration and the unconscious image of the body. Therefore, this work shows the importance of provide the child to build his own history of the disease to better deal with its effects. It yet reflects about the specificity of a psychoanalytic work on the multidisciplinaries groups that assists the patients outside the oncological treatment. The psychoanalyst, on his acts, must keep the singularity of his work and, when necessary, execute in crew

Orientador: Simone dos Santos Aguiar / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-27T11:33:29Z (GMT). No. of bitstreams: 1 Parentoni_CamiladaCosta_M.pdf: 2266019 bytes, checksum: d52cdcef298063645cf0707daba29332 (MD5) Previous issue date: 2015 / Resumo: Introdução: No mundo o câncer infantil é raro, apresentando incidência anual entre 70 e 160 casos por milhões de habitantes de 0 a 14 anos (2). Aproximadamente 4 % de mortes a cada ano é em decorrência do câncer pediátrico (3). A perspectiva de cura dos pacientes com câncer melhorou, mas apesar dos imensos esforços realizados pelos profissionais da saúde, alguns desses pacientes morrerão (5). Os profissionais que atuam nos cuidados à criança com câncer sob cuidados paliativos foram preparados em sua formação para promover a saúde e cura dos indivíduos e não para perdê-los para a morte (29). Os cuidados paliativos objetivam prevenção e alívio do sofrimento, avaliação e tratamento da dor e de outros sintomas de ordem física, psicológica, social e espiritual (19,20). Tal qual a definição de cuidados paliativos, a Enfermagem é uma profissão comprometida justamente com a proteção, promoção da saúde, prevenção de doenças e alívio do sofrimento por meio dos cuidados prestados ao paciente sem possibilidade de cura (25). Fez-se necessário o conhecimento da atuação do enfermeiro dentro desse contexto. Objetivo: analisar e descrever as percepções subjetivas e a atuação técnica dos enfermeiros diante da criança e do adolescente com câncer, sem possibilidades terapêuticas de cura, no momento da terminalidade e morte. Método: Pesquisa de campo prospectiva, descritiva, transversal com abordagem qualitativa. A análise de conteúdo temática foi escolhida para analisar os dados. Participaram 19 enfermeiros das alas de internação, dos períodos matutino, vespertino e noturno, que atuaram com a criança e adolescente com câncer em cuidados paliativos, na internação que precedeu em até 24 horas a ocorrência do óbito. Os dados foram coletados de abril de 2012 a janeiro de 2013, sendo possível captar a atuação desses enfermeiros correspondentes ao óbito de 17 pacientes. Responderam a uma questão norteadora aberta, discorrendo livremente sobre o tema, enfatizando sua vivência pessoal e profissional/técnica. Resultados: Após a categorização dos dados, emergiram três categorias analisadas e discutidas como pessoal, profissional e necessidades apontadas pelos enfermeiros. Na primeira, foram destacados os sentimentos vivenciados pelos enfermeiros, os recursos subjetivos utilizados por eles para auxiliar sua prática assistencial e as características pessoais facilitadoras dispensadas ao cuidado prestado que colaboraram para uma assistência de melhor qualidade. Na segunda, os enfermeiros destacaram os procedimentos técnicos realizados, recursos operacionais e apoio ao paciente e família. Por último, alguns enfermeiros levantaram a necessidade de capacitações e treinamentos acerca do tema morte, tanto em nível de formação acadêmica, quanto especificamente institucional. Considerações Finais: Os enfermeiros trouxeram carências que merecem atenção e consideração, pois demonstraram diversos sentimentos em relação à morte do paciente, mas tecnicamente desempenham suas funções com destreza e competência. É essencial a ocorrência de mudança de paradigma institucional, valorizando o cuidar ao invés do curar. O enfermeiro merece ser cuidado em âmbito pessoal, capacitado a cerca do tema para conquistar a manutenção de sua saúde física e mental, bem como ser capaz de oferecer assistência digna ao paciente e sua família / Abstract: Introduction: Childhood cancer is a rare occurrence worldwide, with an annual incidence of 70 to 160 cases per million inhabitants, aged 0-14 years (2). About 4% of deaths each year are a result of pediatric cancer (3). The prospect of a cure for cancer patients has improved, but despite the huge efforts made by health professionals, some of these patients will inevitably die (5). Professionals caring for children with cancer in palliative care are prepared through their training to promote the health and healing of individuals, but not to lose them to death (29). Palliative care aims for the prevention and relief of patient suffering, assessment and treatment of pain and other symptoms of a physical, psychological, social and spiritual nature (19,20). Like the definition of palliative care, nursing is a profession committed to the sole purpose of protection, health promotion, disease prevention and relief of suffering by means of care provided to patients without the possibility of a cure (25). It is necessary to have knowledge of the nurse's role in this context. Objective: To analyze and describe subjective perceptions and the technical performance of nurses tending to children and adolescents with cancer, without therapeutic possibility of a cure at the time of terminal illness and death. Method: Descriptive and prospective field research combined with a qualitative approach. Thematic content analysis was chosen to analyze the data. Nineteen nurses participated in this study. The nurses came from hospital wards, working the morning, afternoon and night shifts, and worked with hospitalized children and adolescents with cancer via palliative care within 24 hours of the occurrence of death. Data was collected from April 2012 to January 2013, and it was possible to capture the performance of these nurses, corresponding to the death of seventeen patients. The participants responded to an initial question, talking freely about the subject, emphasizing both their personal and professional/technical experiences. Results: After the categorization of the data into three categories, personal and professional needs identified by nurses were analyzed, discussed and revealed. First, the feelings experienced by the nurses were highlighted, those being the subjective resources used by them to help their practice and the enabling of personal characteristics dispensed in the care that contributed to better quality care. Second, the nurses highlighted the technical procedures performed, operational resources utilized and support for the patient and family. Finally, some of these nurses raised the need for training on the topic of death, not only at the academic level, but also specifically at the institutional level. Final thoughts: These nurses have shed light on deficiencies that need attention and consideration by showing their feelings about the deaths of patients, all the while, they have performed their duties with skill and professionalism regardless of how they feel personally. It is essential for the occurrence of change in the institutional paradigm to value care over cure. Nurses deserve attention at the personal level, as well as to know every aspect of the situation in order to maintain their physical and mental health, to be able to provide dignified care to patients and their families / Mestrado / Saude da Criança e do Adolescente / Mestra em Ciências

Text in Afrikaans / The problem that motivated the study was that siblings of children with cancer may experience the relationships within the family differently after cancer treatment. The purpose was to investigate and describe how family dynamics are experienced by the siblings of a cancer patient after his/her treatment for cancer. The research methodology includes qualitative research of an explorative and descriptive nature. Data were collected through unstructured interviews with siblings of children who had received treatment for cancer. From this data eight categories were identified accordingly. Although the data do not indicate that siblings experienced family dynamics after treatment as problematic, as expected, the information contributes by making parents of cancer patients more aware of the siblings' emotions and needs. / Social Work / M.Diac (Spelterapie)

Text in Afrikaans / The problem that motivated the study was that siblings of children with cancer may experience the relationships within the family differently after cancer treatment. The purpose was to investigate and describe how family dynamics are experienced by the siblings of a cancer patient after his/her treatment for cancer. The research methodology includes qualitative research of an explorative and descriptive nature. Data were collected through unstructured interviews with siblings of children who had received treatment for cancer. From this data eight categories were identified accordingly. Although the data do not indicate that siblings experienced family dynamics after treatment as problematic, as expected, the information contributes by making parents of cancer patients more aware of the siblings' emotions and needs. / Social Work / M.Diac (Spelterapie)

Thesis (MEdPsych (Educational Psychology)--University of Stellenbosch, 2009. / This study focused on South African siblings' experiences of a brother or sister with cancer. Social constructionism was used as an epistemological framework. Three in-depth interviews with siblings (ages 12 – 16 years) of pediatric cancer patients, were done. The case study approach was chosen as the most suitable method to gain the information. The thematic content analysis was the method of analysis. Participants' experiences with regard to their siblings' cancer were reconstructed according to themes. Recurring themes were elucidated and linked with the literature. The study allowed participants to express their conscious and unconscious experiences by means of verbal and non-verbal (art activities) communication. Results support the concern by previous studies about siblings' vulnerability since the diagnosis of a brother's/sister's cancer. The uniqueness of each sib's experience and the implementation of individualy-centered intervention strategies is emphasized. Educational Psychologists as well as members of the multidisciplinary team (teachers, medical and nursing staff, parents, family and peers) interested in supporting siblings of pediatric cancer patients can benefit from this study.

published_or_final_version / Nursing Studies / Master / Master of Nursing in Advanced Practice

This study examined the relationship between executive and psychosocial functioning in 45 children and adolescents age 6 to 17 years who had been treated for a brain tumor. Executive functioning deficits can profoundly impact an adult's ability to function successfully in life. The purpose of the study was to evaluate the potential impact of executive functioning deficits on the day-to-day functioning in a pediatric population. The domains of executive functioning assessed included cognitive flexibility, conceptual thinking, sustained attention, and response inhibition. Psychosocial functioning was assessed using both parent and child report. Several significant relationships were found for adolescents ages 15 and older, with effect sizes ranging from medium to large. In particular, cognitive flexibility and conceptual thinking were significantly related to parent report of depression and adaptive functioning. Fewer significant relationships with smaller effect sizes were found for younger children. The results may reflect the developmental emergence of executive functioning abilities and late effects of executive functioning deficits upon psychosocial functioning. The correlational design of this study precludes definitive statements regarding the temporal nature of the relationship. Additional research, including longitudinal research and replicatory studies, will be needed to further investigate the developmental consequences of executive functioning impairment.

Apesar dos avanços médicos, o câncer ainda é sinônimo de morte, o que acarreta dificuldades no enfrentamento da doença em suas diferentes fases, que começam a partir do momento do diagnóstico. Propõe-se um estudo aprofundado sobre as formas com as quais a criança com câncer lida e enfrenta a doença, bem como expressões emocionais e os recursos psicológicos presentes no processo de adoecimento. Partiu-se da hipótese de que o adoecimento por doença grave na infância acarrete prejuízos no desenvolvimento psicológico dessas crianças. A coleta de dados foi realizada em uma instituição filantrópica de apoio à criança com câncer, em um ambulatório especializado em onco-hematologia da rede pública e em uma escola pública do Estado de São Paulo. Foram avaliadas, no total, 60 crianças, sendo 30 crianças da população escolar para o grupo controle e 30 crianças do grupo clínico, com diagnósticos diversos de câncer, com idades entre 7 e 13 anos, de ambos os sexos. Foi realizada uma entrevista individual com cada criança, em que foram aplicados o H-T-P (Teste do Desenho da Casa-Árvore-Pessoa) e o Teste do Desenho da Pessoa na Chuva. Também foram considerados os familiares das crianças com câncer, totalizando a participação de 32 familiares, com os quais foi realizada uma entrevista semiestruturada. Foram utilizados o Método Quantitativo e Qualitativo para análise dos resultados, a partir da abordagem psicanalítica, em que foi feita uma comparação entre o grupo clínico e o grupo controle. Os desenhos das crianças foram analisados quantitativamente, enquanto, para os dados obtidos a partir das entrevistas semiestruturadas com os familiares, utilizou-se a análise qualitativa. Foi realizada uma comparação, por meio da análise estatística, entre as produções gráficas dos grupos controle e clínico. Os resultados revelaram, nas crianças com câncer, em comparação com as crianças sem a doença, a presença de maior desequilíbrio intra e interpessoal, pobre ou fuga do contato com a realidade, falta de recursos para obter satisfação do meio, sobrecarga emocional, instabilidade e desequilíbrio emocional e sentimentos de insegurança, impotência e viii desproteção, além de dificuldades em entrar em contato com o próprio corpo. O trabalho demonstra o impacto no desenvolvimento psicológico e os recursos presentes na criança com câncer. Conclui-se que, devido a um crescente número de sobreviventes de câncer infantil, torna-se importante pensar em formas de tratamento que preservem não só a vida e o corpo, mas também as dimensões psicológicas e sociais; desse modo, o tratamento deve visar o ser biopsicossocial, sendo necessário se pensar na qualidade de vida dessas crianças durante e após o tratamento. Essa criança sobrevivente terá ainda uma vida pela frente e essa vida tem de poder ser usufruída com menor número de sequelas e com a melhor qualidade possível. O estudo presente traz contribuições para a área científica e clínica de atuação junto às crianças com câncer e seus familiares / Despite medical advances, cancer is still synonymous with death, which causes difficulties in coping with the disease in its different phases that begin at the time of diagnosis. An in-depth study is proposed, investigating approaches employed by the child with cancer to deal and face the disease, as well as the emotional expressions and psychological resources present in the process of becoming ill. It is hypothesized that severe illness in childhood leads to losses in the psychological development of these children. Data collection was performed at a philanthropic institution in support of children with cancer, in an outpatient clinic specializing in public network onco-hematology and at a public school in the state of São Paulo. A total of 60 children were evaluated, including 30 children from the school population for the control group and 30 children with different diagnoses of cancer for the clinical group. Children were between 7 and 13 years of age, from both sexes. An individual interview was conducted with each child, in which the H-T-P (House-Tree-Person Drawing) and the Person\'s Drawing Test in the Rain were applied. Family members of children with cancer were also considered, totaling the participation of 32 family members, with whom a semi-structured interview was conducted. Quantitative and qualitative methods were utilized to analyze the results, based on the psychoanalytic approach, in which a comparison was made between the clinical group and the control group. The children\'s drawings were analyzed quantitatively, while the qualitative analysis was used to analyze the data obtained from the semi-structured interviews with the family members. The study employed statistical analyses (Chi-square and Student´s t test) to compare drawings from both groups. The results revealed the presence of greater intra and interpersonal imbalance in children with cancer, compared to children without the disease. Also, children with cancer demonstrated poor contact with reality, lack of resources to obtain environmental satisfaction, emotional overload, instability and emotional imbalance, feelings of insecurity, impotence and lack of protection, and difficulties in getting in touch with their own body. The results x demonstrate the impact of the diagnosis on the psychological development of the children with cancer. It is possible to conclude that, due to an increasing number of survivors of childhood cancer, it is important to develop new methods of treatment that preserve not only the physical aspect, but also the psychological and social domains. Therefore, treatment should aim at the biopsychosocial aspect of these children, considering quality of life pre and post-treatment and that this \"survivor\" child still has a whole life ahead of him/her, which should be enjoyed with as fewer sequels as possible and with the best quality possible. The present study brings contributions to the scientific literature and the clinical area, providing insights about children with cancer and their relatives