published_or_final_version / Social Work and Social Administration / Master / Master of Philosophy

The purpose of the study has been, by adopting a view of life and a learning perspective, to reach an understanding of the way in which cancer patients in a palliative care context understand and cope with their existential life situation. I asked the following questions: 1) How does their personal view of life influence the patients’ understanding and coping with the illness and existential life situation? 2) What existential questions are central to the patients? 3) What is personal learning all about? 4) What prerequisites are important for fostering the patients’ personal learning? Interviews focusing on narratives were conducted with ten patients who have an incurable cancer disease. The interviews were taped and transcribed into texts. A hermeneutic method was applied to understand the content and import of the patients’ narratives. The results show that the patients achieve closure, which involves them making reassessments, adapting their life to the illness, being reconciled with themselves and with their relation to their surroundings. It is also about them wishing to bequeath a legacy and hand down desirable qualities, values and merits for future generations. Taking this view of life as their basis, the patients interpret their illness, existential questions and life situation, and structure their existence so as to make it comprehensible and meaningful. Life narratives can serve as a tool in enabling caregivers to identify patients’ existential questions, view of life, learning requirements and the way they make sense of things (”meaning-making”). By means of view of life support counselling caregivers can identify the patients’ personal ideas, values and support their needs. The patients can reach an awareness of their personal view of life. Reappraising and developing this can be viewed as a form of perspective shift or learning.

The purpose of the research was to explore the challenges faced by both employer and employee when the later undergoes active cancer treatment from a systemic perspective. A qualitative research was conducted using a case study of six sessions with both employer and employee. The study revealed that the employer and employee defined their relationship and boundaries as a system. The research project made a great impact on the researchers’ map regarding cancer or any other symptom, the person with cancer and the employer. In the researcher’s old map, before the research project, cancer implied a very threatening disease which rendered both the employer and the employee helpless and powerless. Through the research project the researcher discovered the significance of not having preconceived ideas as according to this study both the employer and employee had the freedom to punctuate their challenges in relation to the latter undergoing active treatment. / Social Work / M. A. (Social Science (Mental Health))

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2019-03-15T12:25:49Z No. of bitstreams: 1 Ingra Venturini Nicolai.pdf: 1803176 bytes, checksum: c11545f13204f5575a533be1314881c3 (MD5) / Made available in DSpace on 2019-03-15T12:25:49Z (GMT). No. of bitstreams: 1 Ingra Venturini Nicolai.pdf: 1803176 bytes, checksum: c11545f13204f5575a533be1314881c3 (MD5) Previous issue date: 2019-02-15 / Conselho Nacional de Pesquisa e Desenvolvimento Científico e Tecnológico - CNPq / Cancer is an aggressive disease that affects not only the carrier, but your family as a whole. Faced with the diagnosis and possible loss of a loved one, the family experiences moments of extreme suffering, anxiety and insecurities, in a scenario full of doubts and adaptive demands related to the treatment. It is necessary to look and give due attention to family caregivers who, even without having the disease itself, carry it within themselves, with feelings similar to those of the sick person or even more serious than those. It is necessary to look, mainly, for those who dedicate themselves integrally to this care. The present research aims to understand the vulnerability and protection factors associated with the role of the main family caregiver of cancer patients. Twelve family caregivers of cancer patients were interviewed. In the data collection, an interview script was used and active listening was practiced. The analysis was qualitative. The results revealed vulnerability and protection factors associated with the main family caregiver of cancer patients. Lack of information; silence; difficult access to health services; the existence of unprepared professionals; an inflexible and conflicting family structure, are factors that may contribute to the vulnerability of the main family caregiver of cancer patients. On the other hand, easy access to health services; the support offered by trained professionals; knowledge about the disease, treatment and correct information about the patient's clinical condition; self-care; spirituality and religiosity; support groups; a flexible family structure that allows the division of tasks, are factors that can contribute to the protection of the main family caregiver of cancer patients. These results reinforce the need for the caregiver to receive the necessary support to be able to assume this function in a healthy way, predicting physical, psychological and social damages / O câncer é uma doença agressiva que não afeta apenas o portador, mas a sua família como um todo. Frente ao diagnóstico e a possível perda de um ente querido, a família vivencia momentos de extremo sofrimento, ansiedade e inseguranças, em um cenário repleto de dúvidas e exigências adaptativas relacionadas ao tratamento. É necessário olhar e dar a devida atenção aos cuidadores familiares que, mesmo não possuindo a doença propriamente dita, carregam-na dentro de si, com sentimentos semelhantes aos do indivíduo adoecido ou ainda mais graves do que os do mesmo. É necessário olhar, principalmente, para quem se dedica integralmente a esse cuidado. A presente pesquisa tem como objetivo entender quais os fatores de vulnerabilidade e proteção associados à função de cuidador familiar principal de paciente oncológico. Foram entrevistados 12 cuidadores familiares de pacientes oncológicos. Na coleta de dados foi utilizado um roteiro de entrevista e praticada a escuta ativa. A análise foi qualitativa e os resultados revelaram fatores de vulnerabilidade e proteção associados à função de cuidador familiar principal de paciente oncológico. A falta de informação; o silêncio; o difícil acesso aos serviços de saúde; a existência de profissionais despreparados; uma estrutura familiar inflexível e conflituosa, são fatores que podem contribuir para a vulnerabilidade do cuidador familiar principal de paciente oncológico. Por outro lado, o fácil acesso aos serviços de saúde; o suporte oferecido por profissionais preparados; o conhecimento sobre a doença, sobre o tratamento e informações corretas sobre o quadro clínico do paciente; o autocuidado; a espiritualidade e a religiosidade; grupos de apoio; uma estrutura familiar flexível e que permita a divisão de tarefas, são fatores que podem contribuir para a proteção do cuidador familiar principal de paciente oncológico. Resultados estes, que reforçam a necessidade de o cuidador receber o suporte necessário para conseguir assumir essa função de forma saudável, prevendo danos físicos, psíquicos e sociais

Female breast cancer patients are often confused, frustrated, and devastated by changes occurring in their bodies and the treatment process. Many women express frustration and concern with the inability to know what the next phases of their life will bring. Previous research also states that many women struggle to communicate with others about treatment as well as side effects. This research examined how woman are use metaphors to describe their experience with breast cancer, specifically throughout the treatment period related to body image struggles. I qualitatively conducted interviews with women who were either currently in treatment or just finishing. My interview questions related to their uncertainties, as well as the changes occurring to their bodies. After conducting the interviews I transcribed the conversations and coded for specific metaphors. The results were consistent with previous research, in that that the interviewees used at least four major metaphors to describe what they are going through. The four most prominent metaphors were (1) journey, (2) game, (3) struggle/fight, (4) grasping. The findings could benefit patients, nurses, physicians as well as family and friends to reduce stress and help with coping. The findings may also help female patients struggling with identity issues due to lumpectomies or mastectomies. Understanding how patients comprehend the disease can ultimately help others to understand and hopefully reduce some of the concerns of all those involved in such situations.

O câncer e o processo de hospitalização comumente cursam com forte impacto psicológico sobre as crianças e adolescentes, gerando estresse e fadiga. Isto aplica-se especialmente, para àqueles sob quimioterapia, pois esta, constitui-se em uma das experiências mais estressantes e ameaçadoras que pode exacerbar os sintomas relacionados ao câncer e levar a uma diminuição da qualidade de vida (QV). O estresse associado ao desenvolvimento do câncer pode causar disrupturas no eixo hipotálamo-hipófise-adrenal, e suprimir importantes vias neuroimunoendócrinas. Assim, intervenções destinadas a atenuar as alterações fisiológicas relacionadas ao estresse podem favorecer a recuperação do sistema imune e induzir alterações neuroimunoendócrinas para potencializar a vigilância imunológica durante o tratamento oncológico. Com o aumento da incidência de câncer, é crucial que os profissionais de saúde desenvolvam intervenções eficazes para o manejo dos sintomas oncológicos, de modo a aliviar a sobrecarga do tratamento nesses pacientes durante o processo de hospitalização, de modo a contribuir para um melhor prognóstico da doença. Ademais, pacientes pediátricos oncológicos podem se beneficiar de intervenções não-farmacológicas, por exemplo, a intervenção dos clowns, para aliviar os sintomas relacionados ao câncer. Contudo, poucos estudos têm investigado os mecanismos moleculares envolvendo a intervenção dos clowns. Nosso objetivo principal foi investigar os efeitos da intervenção dos clowns sobre o estresse psicológico e a fadiga-relacionada ao câncer (FRC) em pacientes pediátricos oncológicos sob quimioterapia. Além disso, nós investigamos se alterações nos níveis de cortisol, ?-amilase (sAA), citocinas e metaloproteinases de matriz (MMP-9) estão associadas com estresse psicológico e com FRC de pacientes pediátricos com osteossarcoma submetidos à intervenção dos clowns. Trata-se de um estudo quase-experimental pré-teste/pós-teste. Foram colhidas oito amostras de saliva em momentos idênticos, isto é, no baseline (pré-intervenção) e no pós-intervenção (+ 1h, + 4h, + 9h e + 13h após o despertar). As concentrações de cortisol salivar, sAA, citocinas e MMP-9 foram mensuradas por ELISA. Dados sociodemográficos e clínicos foram coletados via prontuários médicos, além disso, foram aplicadas a Escala de Estresse Infantil-ESI(TM) e a Escala Multidimensional de Fadiga-PedsQL(TM). Os escores das escalas foram comparados entre o baseline e o pós-intervenção, e também, foram correlacionados com os níveis dos biomarcadores. Para análise dos dados, utilizou-se da estatística descritiva e estatística não paramétrica. Em comparação com as medidas do baseline, observamos que os níveis de estresse psicológico total, bem como os de fadiga geral dos pacientes pediátricos oncológicos, melhoraram significativamente após a intervenção dos clowns ( p= 0.003; p= 0.049, respectivamente). Não houve correlações significativas entre as Áreas sob Curva (AUC) da sAA e do cortisol no baseline e nem no pós-intervenção. Além disso, a intervenção dos clowns reduziu os níveis de IL-1? e de cortisol nos pacientes pediátricos com osteossarcoma. A AUC da IL-1? correlacionou-se positivamente com AUC do cortisol e com a AUC da sAA no pósintervenção. Inversamente, os níveis de IL-6, TNF-?, IL-12p70, IL-10, TGF-? e MMP-9 não mostraram diferenças significativas no pós-intervenção. Em síntese, nossos resultados sugerem que a intervenção dos clowns é uma boa intervenção não-farmacológica para reduzir o estresse psicológico e a FRC em pacientes pediátricos oncológicos sob quimioterapia / Cancer and the hospitalization process often have a psychological impact on the children and adolescents, usually leading to intense stress as well as fatigue. This especially applies to children and adolescents who have been submitted to chemotherapy, since it still constitutes a stressful and threatening experience for them and may exacerbate cancer symptom burden clusters, leading to a decrease in their health related quality of life (QoL). In addition, stress associated with cancer development leads to disturbances/disruption in the hypothalamicpituitary-adrenal (HPA) axis and suppresses important neuroimmunoendocrine pathways. Hence, interventions aimed at attenuating the physiological changes related to stress favor the recovery of the immune system and, consequently, induce alterations in neuroimmunoendocrine factors that increase immunological surveillance during cancer treatment. With the increase in cancer rates, it is crucial that healthcare professionals develop effective interventions to support pediatric cancer patients during the hospitalization process in order to relieve the burden of cancer treatment, which may contribute to a better prognosis of the disease. In an attempt to alleviate some of the cancer-related symptoms, pediatric oncology patients can take advantage of non-pharmacological interventions, including clown intervention, which can be a very advantageous approach to reduce unpleasant symptoms in pediatric cancer patients. However, few studies have investigated the molecular mechanisms that mediate health outcomes of clown intervention. The main purpose of this study was to investigate the effects of the clown intervention on psychological stress and cancer-related fatigue (CRF) in pediatric cancer inpatients undergoing chemotherapy. Also, we aimed to investigate whether changes in the levels of biomarkers, including cortisol, ?-amylase (sAA), cytokines, and matrix metalloproteinase-9 (MMP-9) are associated with psychological stress and CRF levels in pediatric osteosarcoma inpatients following clown intervention. A pretestposttest quasi-experimental study was undertaken with pediatric cancer inpatients. Eight nonfasting saliva samples were collected at identical times upon clown intervention, i.e., at baseline (pre-intervention) and post-intervention (+ 1h, + 4h, + 9h, and + 13h post awakening). Salivary cortisol, sAA, cytokines and MMP-9 concentrations were measured using high sensitivity Enzyme-Linked Immuno Sorbent Assay. Sociodemographic and clinical data, and Child Stress Scale-ESI(TM) and PedsQL(TM) Multidimensional Fatigue Scale were applied and the results were compared at baseline and after the clown intervention, and also correlated with biomarker trajectories. Data analysis was performed using nonparametric statistical tests. In comparison with baseline measurements, the overall psychological stress for pediatric cancer inpatients as well as their perception of fatigue improved upon clown intervention (p= 0.003; p= 0.049, respectively). There were no significant correlations between sAA and cortisol for both Areas Under Curve (AUC) at baseline or at post-intervention. Also, clown intervention reduced IL1? and salivary cortisol levels in pediatric osteosarcoma inpatients. Additionally, AUC for IL1? positively correlated with AUC for cortisol as well as with AUC for sAA at postintervention. In contrast, levels of IL-6, TNF-?, IL-12p70, IL-10, TGF-? and MMP-9 did not show significant differences upon clown intervention. Overall, our results suggest that clown intervention is a good non-pharmacological intervention to reduce psychological stress and CRF in pediatric cancer inpatients undergoing chemotherapy

This thesis explores the experience of living with cancer-related cachexia (CRC) from the patient perspective. Critique of the literature indicates few examples where patients have had the opportunity to speak. Following a challenging recruitment process, six people living with the syndrome were interviewed to elicit their narrative. Their stories were examined and themes identified relating to their personal feelings and how these affected social interactions. Thematic analysis was applied to produce what is a rich qualitative description of the experience from this small sample. Living with CRC requires development of strategies to survive. Emergent themes included the loss of sense of self and a changing relationship to the social world, social isolation and dissatisfaction with truth-telling by health professionals. Recommendations are made to mitigate the suffering of patients by empowering them through better information and acknowledgement of their condition. The balance between nutrition and wellbeing is re-examined, calling for a reorientation of perspective from a focus on intake towards a focus on quality of life. This clearly falls within the nurse-as patient-advocate paradigm and the relevance and meaning of this research to the nursing profession is explored. Potential areas for further research in regards to both patient experience and nursing practice are extrapolated.

<p>A randomized intervention study, with the aim to compare the effects of individual psychosocial support provided by (1) oncology nurses specially trained in psychological techniques (INS), or (2) psychologists (IPS), to (3) standard care (SC). Breast cancer patients, living in Uppsala County, and about to start adjuvant treatment at the Department of Oncology, Uppsala, were consecutively included between 1998 and 2000. The patients were assessed seven times during two years by self-administered questionnaires. Study I revealed positive effects of both INS and IPS as compared to SC on global quality of life, side effects, and post-traumatic distress. A lower proportion of patients in the intervention groups had psychosocial support provided in routine care compared with the SC group. In study II the patients reported being highly satisfied with the intervention, irrespective of profession providing the support. However, patients in the INS group reported higher levels of benefit regarding disease-related problems than those in the IPS group. In study III total Health Care costs were lower in the intervention groups and since a gain in quality-adjusted life years (QALY) was seen (mean .1 QALY), the interventions dominated. The costs for the interventions were 44 291- 48 978 SEK. In study IV, daily reporting of anxiety, depression and activity on Visual Analogue Scales (VAS) were completed during two weeks before and after the Hospital Anxiety and Depression Scale (HADS) assessments. A point assessment with the HADS captured the situation better than four weeks assessment on three VAS in the diary. The HADS was considered preferable to the diary. The conclusion is that psychosocial support is beneficial for breast cancer patients and that the intervention delivered by nurses was as effective as that given by psychologists. The costs for the interventions were limited.</p>

A randomized intervention study, with the aim to compare the effects of individual psychosocial support provided by (1) oncology nurses specially trained in psychological techniques (INS), or (2) psychologists (IPS), to (3) standard care (SC). Breast cancer patients, living in Uppsala County, and about to start adjuvant treatment at the Department of Oncology, Uppsala, were consecutively included between 1998 and 2000. The patients were assessed seven times during two years by self-administered questionnaires. Study I revealed positive effects of both INS and IPS as compared to SC on global quality of life, side effects, and post-traumatic distress. A lower proportion of patients in the intervention groups had psychosocial support provided in routine care compared with the SC group. In study II the patients reported being highly satisfied with the intervention, irrespective of profession providing the support. However, patients in the INS group reported higher levels of benefit regarding disease-related problems than those in the IPS group. In study III total Health Care costs were lower in the intervention groups and since a gain in quality-adjusted life years (QALY) was seen (mean .1 QALY), the interventions dominated. The costs for the interventions were 44 291- 48 978 SEK. In study IV, daily reporting of anxiety, depression and activity on Visual Analogue Scales (VAS) were completed during two weeks before and after the Hospital Anxiety and Depression Scale (HADS) assessments. A point assessment with the HADS captured the situation better than four weeks assessment on three VAS in the diary. The HADS was considered preferable to the diary. The conclusion is that psychosocial support is beneficial for breast cancer patients and that the intervention delivered by nurses was as effective as that given by psychologists. The costs for the interventions were limited.

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