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Using patients in the training of healthcare students is required by the World Federation of Medical Educators. South African legal instruments such as the Constitution and the National Health Act recognise patients’ right to autonomy. This descriptive, analytical study investigated whether patients should be informed that the person involved in their care is a student. International studies and the ethical guidelines of regulating bodies support informing patients of the academic status of persons participating in their care. While patients are willing to participate in the training of healthcare students, they do not waive their right to informed consent. South African health care practitioners are increasingly required to disclose non-medical information to patients, such as treatment costs. Patients should be informed about the academic status of persons involved in their care and have the right to refuse to participate in medical education. The HPCSA should draw up guidelines to support this.

A thesis submitted to the School of Public Health, Faculty of Health Sciences, University of Witwatersrand in fulfilment of the requirements for the degree of Doctor of Philosophy Johannesburg, South Africa 2017. / Introduction: As Prevention of Mother-to-Child Transmission and HIV treatment programmes have scaled-up, more women are being kept alive and fewer children are infected with HIV. One of the challenges that HIV-infected women face is how to disclose their own HIV status to their children. The disclosure literature suggests that the main reason for women’s HIV-disclosure is to obtain social support, including financial, practical and emotional assistance, to help women to manage their HIV infection. HIV-related stigma, lack of knowledge of how to disclose, uncertainty about a child’s reaction to disclosure, and a perception that a child lacks the developmental capacity to handle HIV-disclosure are factors that affect disclosure decisions. HIV-disclosure is considered a critical element in strengthening the capacity of families in the continuum of HIV care. In 2011, the World Health Organization published guidelines for parental HIV-disclosure to children. These guidelines recommended full disclosure to primary school-aged children (from 6 years up to 12 years) and partial disclosure to younger children. Globally, but particularly in sub-Saharan Africa, HIV-disclosure interventions are lacking. The Amagugu maternal HIV-disclosure intervention was developed, piloted and evaluated between 2010 and 2012 to assist mothers to disclose their HIV status to their HIV-uninfected children. The intervention enrolled 281 mothers and their primary school-aged HIV-uninfected children, and aimed to increase maternal capacity to disclose their HIV status. This was implemented through six lay counsellor- led, home-based, sessions, including a health intervention at a primary health care clinic. The Amagugu intervention was acceptable and feasible in a high HIV prevalence, resource-poor, rural setting, and increased maternal HIV-disclosure to primary school-aged HIV-uninfected children. Methods: This PhD study was nested within the Amagugu study and was conducted at the Africa Centre for Population Health, now the Africa Health Research Institute (AHRI), in the Hlabisa sub-district of Umkhanyakude, northern KwaZulu-Natal, South Africa. The aim of this PhD was to explore, in more depth, the experiences of women enrolled in the Amagugu intervention, including their experiences of the health intervention. Both quantitative and qualitative methods were used. The sample for the PhD study comprised three groups: 1) all mothers from the Amagugu study (N=281); 2) a sub-sample of mothers from the Amagugu study (N=20) and 3) health care staff employed in the clinics where the Amagugu study took place (N=87). The quantitative data used in the PhD study xvi were collected at different time points from the 281 women, using questionnaires specifically designed for the Amagugu study, including baseline and post-disclosure questionnaires. Data on the clinic experiences were collected from the 281 mothers using semi-structured questionnaires administered after the health intervention. Semi-structured questionnaires, specifically designed for this PhD study, were administered to the clinic staff during the health intervention. Qualitative data were collected using semi-structured questionnaires with the clinic staff (N=87), nine focus groups with clinic staff after the health intervention, and in-depth and semi-structured interviews with the sub-sample of women (N=20) who were enrolled after the Amagugu intervention had been completed. The University of KwaZulu-Natal Biomedical Research Ethics Committee (BREC Ref: BF 144/010) and the University of Witwatersrand Human Research Ethics Committee (Ref: R14/49) granted ethical approval for the PhD study. Results: The results reported in this PhD are drawn from four papers written during the course of this PhD, (three published papers and one paper accepted for publication). The results have been integrated from the data collected from the women and health care staff that were used for the PhD, and a literature review that resulted in a publication. The three main themes that emerged from the PhD are: 1. HIV-related stigma and HIV-disclosure: The literature review revealed that fear of HIV-related stigma was the most common reason for non-HIV-disclosure of HIV to both adults and children. In the sub-sample of 20 women, only two women had not disclosed to other adults due to fear of HIV-related stigma prior to the intervention. Those who had disclosed to only some, but not all other adults in their close social networks, reported HIV-related stigma at household (6/18), community (2/18) and clinic levels (1/18). Although HIV-related stigma was reported, there was also a normalisation of HIV and antiretroviral therapy (ART) in some communities due to the high social exposure to HIV in the study area. Qualitative data from the focus groups with clinic staff, and interviews with the sub-sample of 20 women, recognised that children’s exposure to HIV education has played a role in the normalisation of HIV. 2. HIV-disclosure and family strengthening: The majority of women in the sub-sample had disclosed their HIV status to other adults including their partners, friends and xvii other relatives, prior to the Amagugu intervention. Most women reported living positively with HIV and receiving necessary support from those to whom they had disclosed. Of those women who had disclosed to partners, about half had disclosed to their partners first before disclosing to any other adults. Their partners had mixed reactions to disclosure but were overall supportive. Whilst women’s original fear of disclosing their HIV status to their children had been that they would be stigmatised by their children, on the contrary, most children were supportive. The majority of women in the sub-sample expressed that they would advise other women in similar circumstances to disclose their HIV status to their children for social support, because disclosure increased family cohesion and improved antiretroviral therapy adherence. The health staff echoed the same sentiments regarding social support and family cohesion in the focus groups. 3. HIV-disclosure and access and adherence to HIV treatment: The interviews with the sub-sample of 20 women, and the semi-structured questionnaires and focus groups with 87 clinic staff, all revealed that participants agreed that whilst maternal HIVdisclosure was challenging, it was necessary for women to obtain social support from their children. Health care staff also agreed that maternal HIV-disclosure to their children was instrumental in supporting HIV-infected women to access and adhere to their HIV treatment. The clinic staff recognised the role they could play in health promotion and increasing opportunities for children to participate in activities at health facilities, but acknowledged that they needed support to address logistical constraints that hinder child-friendliness in health facilities, including heavy workloads, poor clinic infrastructure and staff shortages. The health intervention provided clinic staff with child-friendliness training and materials that were found to be acceptable and feasible, and yielded encouraging results. Discussion: This study contributes to the literature about the experiences of African, HIVinfected, rural women with HIV-uninfected children living in an ART-era. In particular the experiences of women who have participated in a maternal HIV disclosure intervention in Africa have not been explored previously. The findings of this work indicate that a decade after being diagnosed with HIV, women in this resource-poor setting are generally living positively with HIV. However, HIV-disclosure to other adults does not necessarily translate xviii to disclosure to children, and parents require specific interventions to assist them with this, and to understand the development and level of understanding of their children. Conclusion: Despite concerns raised by women prior to the intervention, including fear of HIV-related stigma and a perception that children lacked the developmental capacity to grasp knowledge about maternal HIV status, the women in this study reported no regrets in disclosing their status to children. They also reported receiving support from their children, which in turn, assisted them with adherence to their own HIV treatment. Future studies could test the same Amagugu intervention materials in a group of HIV-infected women with uninfected children not previously involved in research to explore whether similar results are found. / MT2017

Pesquisa descritiva e qualiquantitativa que resgatou representações sociais de profissionais de saúde e pacientes referentes ao modo de comunicação do diagnóstico da tuberculose e adesão ao tratamento. O trabalho buscou analisar o conteúdo discursivo baseado nas discussões sobre Conscientização desenvolvidas por Paulo Freire. Realizou-se entrevista semi-estruturada com 39 profissionais envolvidos com a entrevista inicial de diagnóstico e 34 pacientes adultos em tratamento da tuberculose em 22 unidades de saúde da região Sul/São Paulo. Questionados sobre a entrevista inicial de diagnóstico, os pacientes entendem este momento de modo amplo, para além da consulta onde receberam a notícia oficial. Entretanto, para profissionais, o momento da notícia é bem delimitado e revela que o diagnóstico possui um caráter tecnológico. Questionados sobre o modo de dar a notícia de sorte a incentivar o paciente a se tratar, uma das categorias expressadas pelos pacientes traz a importância de se discutir tudo aquilo que envolve a doença, contexto e vida do paciente. Em contrapartida, profissionais se importam com o conteúdo a ser informado, mantendo o caráter tecnológico da informação. Questionados sobre os modos de dar a notícia que podem desmotivar o paciente a se tratar, pacientes e profissionais trazem a importância do entendimento do tratamento (aspecto cognitivo) e do respeito e vínculo (aspecto psíquico ou afetivo) para não haver desistência. Com relação ao tratamento parecer complicado quando explicado durante a notícia (aspecto comportamental) pacientes e profissionais discordam desta opção. Algumas ideias centrais destes dois grupos concordam que o tratamento é complicado e isso pode fazer o paciente desistir. Segundo Paulo Freire, toda ação educativa deve ser precedida de reflexão sobre o homem e o meio de vida para que não se torne pré-fabricada e inoperante. Por isso ampliar as discussões sobre o que envolve a doença, contexto e vida do paciente pode contribuir para um entendimento mais completo da situação. Apesar do tratamento da tuberculose ser complicado e, portanto, desmotivante, promover o entendimento do paciente, respeitá-lo e construir um vínculo podem contribuir para a adesão, na visão de pacientes e de profissionais de saúde / Descriptive and qualitative-quantitative research that rescued social respresentations of health professionals and patients in relation to mode of communication of tuberculosis diagnosis and treatment adherence. The study aimed to analyze the discursive content based on discussions about Conscientization developed by Paulo Freire. Semi-structured interviews were performed with 39 professionals involved with the initial diagnostic interview and 34 adult patients in 22 health units in South Region, Sao Paulo. Asked about initial diagnostic interview, patients understand this point broadly, far beyond the consultation where they received the official news. However, for professionals, the moment of the news is well defined and reveals that the diagnosis has a technological character. Asked how to break the news so as to encourage the patient to treatment, one of the categories expressed by patients brings the importance of discussing everything that involves the disease, context and patients life. In contrast, professionals care about the content to be informed, keeping the technological character of the information. Asked about ways to break the news that might discourage the patient to treatment, patients and professionals bring the importance of understanding about treatment (cognitive aspect) and respect and bond (psychic or affective aspect) so as to avoid abandonment. Regarding the fact that the treatment seems complicated when explained in the news (behavioral aspect), both patients and professionals oppose to this option. Some central ideas of these two groups agree that treatment is complicated and can make patient to give it up. According to Paulo Freire, all educational activity must be preceded by reflection on the human being and the lifestyle so that it does not turn out prefabricated and inoperative. Therefore, expanding the discussions on what involves the disease, context and patients life can contribute to a more complete understanding of the situation. Although the treatment of tuberculosis is complicated, and therefore disappointing, to promote the understanding of the patient, to respect him and to build a bond with him can contribute to the adherence, both in patients and health professionals point of view

Pesquisa descritiva e qualiquantitativa que resgatou representações sociais de profissionais de saúde e pacientes referentes ao modo de comunicação do diagnóstico da tuberculose e adesão ao tratamento. O trabalho buscou analisar o conteúdo discursivo baseado nas discussões sobre Conscientização desenvolvidas por Paulo Freire. Realizou-se entrevista semi-estruturada com 39 profissionais envolvidos com a entrevista inicial de diagnóstico e 34 pacientes adultos em tratamento da tuberculose em 22 unidades de saúde da região Sul/São Paulo. Questionados sobre a entrevista inicial de diagnóstico, os pacientes entendem este momento de modo amplo, para além da consulta onde receberam a notícia oficial. Entretanto, para profissionais, o momento da notícia é bem delimitado e revela que o diagnóstico possui um caráter tecnológico. Questionados sobre o modo de dar a notícia de sorte a incentivar o paciente a se tratar, uma das categorias expressadas pelos pacientes traz a importância de se discutir tudo aquilo que envolve a doença, contexto e vida do paciente. Em contrapartida, profissionais se importam com o conteúdo a ser informado, mantendo o caráter tecnológico da informação. Questionados sobre os modos de dar a notícia que podem desmotivar o paciente a se tratar, pacientes e profissionais trazem a importância do entendimento do tratamento (aspecto cognitivo) e do respeito e vínculo (aspecto psíquico ou afetivo) para não haver desistência. Com relação ao tratamento parecer complicado quando explicado durante a notícia (aspecto comportamental) pacientes e profissionais discordam desta opção. Algumas ideias centrais destes dois grupos concordam que o tratamento é complicado e isso pode fazer o paciente desistir. Segundo Paulo Freire, toda ação educativa deve ser precedida de reflexão sobre o homem e o meio de vida para que não se torne pré-fabricada e inoperante. Por isso ampliar as discussões sobre o que envolve a doença, contexto e vida do paciente pode contribuir para um entendimento mais completo da situação. Apesar do tratamento da tuberculose ser complicado e, portanto, desmotivante, promover o entendimento do paciente, respeitá-lo e construir um vínculo podem contribuir para a adesão, na visão de pacientes e de profissionais de saúde / Descriptive and qualitative-quantitative research that rescued social respresentations of health professionals and patients in relation to mode of communication of tuberculosis diagnosis and treatment adherence. The study aimed to analyze the discursive content based on discussions about Conscientization developed by Paulo Freire. Semi-structured interviews were performed with 39 professionals involved with the initial diagnostic interview and 34 adult patients in 22 health units in South Region, Sao Paulo. Asked about initial diagnostic interview, patients understand this point broadly, far beyond the consultation where they received the official news. However, for professionals, the moment of the news is well defined and reveals that the diagnosis has a technological character. Asked how to break the news so as to encourage the patient to treatment, one of the categories expressed by patients brings the importance of discussing everything that involves the disease, context and patients life. In contrast, professionals care about the content to be informed, keeping the technological character of the information. Asked about ways to break the news that might discourage the patient to treatment, patients and professionals bring the importance of understanding about treatment (cognitive aspect) and respect and bond (psychic or affective aspect) so as to avoid abandonment. Regarding the fact that the treatment seems complicated when explained in the news (behavioral aspect), both patients and professionals oppose to this option. Some central ideas of these two groups agree that treatment is complicated and can make patient to give it up. According to Paulo Freire, all educational activity must be preceded by reflection on the human being and the lifestyle so that it does not turn out prefabricated and inoperative. Therefore, expanding the discussions on what involves the disease, context and patients life can contribute to a more complete understanding of the situation. Although the treatment of tuberculosis is complicated, and therefore disappointing, to promote the understanding of the patient, to respect him and to build a bond with him can contribute to the adherence, both in patients and health professionals point of view

For the healthcare provider, disclosing a pediatric patient's difficult diagnosis in the form of an acute or chronic condition to the parents is a challenging task. Healthcare providers often feel unprepared when relaying the news of such diagnosis, and the parents feel equally unprepared upon receiving it (Pririe, 2012). This systematic literature review examined the various communication techniques used in the past, and the techniques' effectiveness in increasing parental satisfaction when first learning of the child's diagnosis. A scarce number of studies related to the most effective techniques were found in the literature, and even fewer were found that evaluated the techniques presented. Overall, three of the most commonly occurring communication themes identified from the studies were: 1) Parents desired privacy during the disclosure and wanted a support system present (mostly a spouse); 2) The diagnosis must be given as soon as the healthcare provider suspected it, and; 3) The healthcare provider must emphasize the positive characteristics of the pediatric patient, as well as the patient's future with the diagnosis. Both parents and providers agreed that further research is needed to identify effective communication techniques used during disclosure. The aim of the research should be to identify the most effective means of communication to increase parental satisfaction. Furthermore, all healthcare providers need collaborative and interdisciplinary training in delivering a difficult diagnosis to increase parental satisfaction.

Introdução: A comunicação de notícias difíceis constitui-se um grande desafio aos profissionais de saúde, exigindo deles habilidades de comunicação. O câncer está fortemente associado à comunicação de notícias difíceis. O câncer de mama, por sua grande incidência e taxa de mortalidade, passa a ser uma questão de saúde pública. No entanto, há uma lacuna no conhecimento em relação ao processo de comunicação de notícias difíceis às mulheres com câncer de mama e suas famílias, na perspectiva de profissionais de saúde no contexto brasileiro. Objetivo: Identificar o processo de comunicação de notícias difíceis às mulheres com câncer de mama e suas famílias pelos profissionais de saúde. Método: Estudo qualitativo que teve como referencial teórico o Interacionismo Simbólico e como referencial metodológico a Teoria Fundamentada nos Dados. Os participantes da pesquisa foram médicos, enfermeiros e psicólogos, totalizando 16 profissionais, que atuam diretamente com as pacientes em serviço especializado em câncer de mama. Foram realizadas entrevistas semiestruturadas, abordando a experiência da comunicação de notícias difíceis. Resultados: A análise dos dados permitiu identificar o modelo teórico Criar as melhores condições para a mulher e à família passarem pela experiência do câncer de mama, que representa as percepções e estratégias presentes na experiência dos profissionais de saúde na comunicação de notícias difíceis. Três categorias estruturam a experiência estudada: Dar a notícia difícil em um contexto complexo, Diminuir o impacto negativo da notícia e Comunicar de modo contínuo. Conclusões: O estudo permitiu identificar um processo psicossocial no qual os fatores inerentes à atuação do profissional e a percepção do benefício da informação constituem os elementos simbólicos centrais da comunicação de notícias difíceis no contexto do câncer de mama, na perspectiva dos profissionais de saúde. O modelo teórico contribui para a compreensão dos significados construídos e das condições que afetam e orientam o processo de comunicação. / Introduction: Breaking bad news constitutes a major challenge for health professionals, requiring specialized communication skills. Cancer is strongly associated with breaking bad news. Breast cancer, for its high incidence and mortality rate, has become a public health issue. However, there is a gap in knowledge related to breaking bad news process to women with breast cancer and their families, in the health professionals perspective, in the Brazilian context. Objective: Identifying breaking bad news process to women with breast cancer and their families by health professionals. Method: A qualitative study with Symbolic Interactionism as theoretical framework and Grounded Theory as methodological framework. The participants were doctors, nurses and psychologists, totaling 16 professionals who work directly with patients in a service specializing in breast cancer. Semi-structured interviews were conducted, addressing the experience of breaking bad news. Results: The data analysis identified the theoretical model \"Creating the best conditions for the woman and family going through the breast cancer experience,\" which represents the perceptions and strategies present in the health professionals experience in breaking bad news. Three categories structure the studied experience: Breaking bad news in a complex context, Decreasing the negative impact of news and Communicating continuously. Conclusions: This study identified a psychosocial process in which factors inherent to the professionals actuation and to the perceived benefit of information are the core symbolic elements of breaking bad news in the breast cancer context, from health professionals perspective. The theoretical model contributes to the understanding of the constructed meanings and the conditions that affect and guide the communication process.

Diss. (sammanfattning) Stockholm : Karolinska institutet, 2010.

Introdução: A comunicação de notícias difíceis constitui-se um grande desafio aos profissionais de saúde, exigindo deles habilidades de comunicação. O câncer está fortemente associado à comunicação de notícias difíceis. O câncer de mama, por sua grande incidência e taxa de mortalidade, passa a ser uma questão de saúde pública. No entanto, há uma lacuna no conhecimento em relação ao processo de comunicação de notícias difíceis às mulheres com câncer de mama e suas famílias, na perspectiva de profissionais de saúde no contexto brasileiro. Objetivo: Identificar o processo de comunicação de notícias difíceis às mulheres com câncer de mama e suas famílias pelos profissionais de saúde. Método: Estudo qualitativo que teve como referencial teórico o Interacionismo Simbólico e como referencial metodológico a Teoria Fundamentada nos Dados. Os participantes da pesquisa foram médicos, enfermeiros e psicólogos, totalizando 16 profissionais, que atuam diretamente com as pacientes em serviço especializado em câncer de mama. Foram realizadas entrevistas semiestruturadas, abordando a experiência da comunicação de notícias difíceis. Resultados: A análise dos dados permitiu identificar o modelo teórico Criar as melhores condições para a mulher e à família passarem pela experiência do câncer de mama, que representa as percepções e estratégias presentes na experiência dos profissionais de saúde na comunicação de notícias difíceis. Três categorias estruturam a experiência estudada: Dar a notícia difícil em um contexto complexo, Diminuir o impacto negativo da notícia e Comunicar de modo contínuo. Conclusões: O estudo permitiu identificar um processo psicossocial no qual os fatores inerentes à atuação do profissional e a percepção do benefício da informação constituem os elementos simbólicos centrais da comunicação de notícias difíceis no contexto do câncer de mama, na perspectiva dos profissionais de saúde. O modelo teórico contribui para a compreensão dos significados construídos e das condições que afetam e orientam o processo de comunicação. / Introduction: Breaking bad news constitutes a major challenge for health professionals, requiring specialized communication skills. Cancer is strongly associated with breaking bad news. Breast cancer, for its high incidence and mortality rate, has become a public health issue. However, there is a gap in knowledge related to breaking bad news process to women with breast cancer and their families, in the health professionals perspective, in the Brazilian context. Objective: Identifying breaking bad news process to women with breast cancer and their families by health professionals. Method: A qualitative study with Symbolic Interactionism as theoretical framework and Grounded Theory as methodological framework. The participants were doctors, nurses and psychologists, totaling 16 professionals who work directly with patients in a service specializing in breast cancer. Semi-structured interviews were conducted, addressing the experience of breaking bad news. Results: The data analysis identified the theoretical model \"Creating the best conditions for the woman and family going through the breast cancer experience,\" which represents the perceptions and strategies present in the health professionals experience in breaking bad news. Three categories structure the studied experience: Breaking bad news in a complex context, Decreasing the negative impact of news and Communicating continuously. Conclusions: This study identified a psychosocial process in which factors inherent to the professionals actuation and to the perceived benefit of information are the core symbolic elements of breaking bad news in the breast cancer context, from health professionals perspective. The theoretical model contributes to the understanding of the constructed meanings and the conditions that affect and guide the communication process.

Diss. (sammanfattning) Linköping : Univ., 2002. / Härtill 5 uppsatser.