Breast cancer incidence in Chinese women is rising in North America. However, a critical review of the empirical research reveals a clear under-representation of the breast cancer survivorship experiences of ethnic minority women, particularly those of Chinese origin. A breast cancer diagnosis not only disrupts a woman’s everyday life but also, and more importantly, her self-identity: who she was before the cancer diagnosis and who she becomes after the diagnosis. The purpose of this study was to understand the lived survivorship experience of Chinese women with breast cancer, in particular the way they reconstruct their self-identity while living under the constant threat of premature mortality. A hermeneutic phenomenology was employed to illuminate the essence of the lived experience. A purposeful sample of 24 Chinese women was recruited, and audiotaped face-to-face semi-structured interviews were conducted in English or Mandarin. An iterative process was carried out to identify themes and interwoven them into the four existentials of lifeworld to lend structural meaning to the lived experience. The self-identity of Chinese women living with breast cancer did not fit the current combative survivor identity and narrative as represented in the North America media. Rather, a ‘quiet’, modest and practical narrative underscoring the Chinese virtues of self-reliance, endurance, and social responsibility and harmony characterized their lived experience and self-identity. They endured unexpected major life events and accepted what life offers in an effort to move on with their lives of being a normal person again. An understanding of the way Chinese women manage the impact of breast cancer and their survivorship experience will significantly contribute to building our knowledge about this minority population within the Canadian context. In turn, this understanding will support health care professionals with the development of culturally sensitive psychosocial/supportive care services to maximize adaptation and recovery.

Survivors of childhood cancer are a relatively new phenomenon in the medical world. The introduction of treatment protocols in the 1970s started a trend in curing children of cancer that historically had been a death sentence. Under these treatment protocols children were given different treatment regimens based on past research that helped remove cancerous cells from their bodies, but were later found to be the cause of treatment related morbidities years into the future; for most survivors roughly ten to 20 years post treatment. These morbidities, commonly called late-effects, are the prime reason that survivors of childhood cancer need to participate in survivorship care. Survivors of childhood cancer are particularly vulnerable to late-effects because the majority of them receive their treatment at a time when their bodies are still growing and developing. Survivorship care services vary by site, but all maintain the common goals of providing long-term follow up for the survivor and education about the ways in which treatments may affect a survivors’ health as they age. Similar to many other facets of healthcare and medicine, there are many populations who do not participate in survivorship care. The purpose of this research is to identify possible barriers to care, assess the level of impact these barriers have upon the survivor’s potential for participation and provide suggestions as to how these barriers can be mitigated. Additionally, this research highlights areas that need further research and analysis.

Purpose: The purpose of this thesis was to perform a scoping review of the current literature and available clinical practice guidelines to generate an understanding of the primary health care needs of women following treatment for breast cancer. Methods: Based on an extensive scoping review of the literature, research findings regarding the complications of breast cancer treatments and corresponding primary care interventions were synthesized. Additionally, validation of the findings of the scoping review was performed through semi-structured interviews with two primary care physicians and three post-treatment breast cancer patients. Results: Eleven broad categories related to the primary health care needs of women after undergoing treatments for breast cancer were identified. These included concerns related to: surgical complications, lymphedema, gynecologic and menopausal symptoms, psychosocial issues, additional primary cancers, cardiovascular implications, osteoporosis, lifestyle changes, fatigue, cognitive dysfunction, and pregnancy. Additionally, it was determined that the majority of existing clinical practice guidelines for breast cancer were outdated, and related to cancer detection and treatment as opposed to survivorship care. Summary: Findings from the scoping review and interviews demonstrate the vast range of primary care needs of women after undergoing treatment for breast cancer. Additionally, these results highlight the critical need for the development of a comprehensive set of current clinical practice guidelines which target primary care physicians and are specifically focused on the survivorship needs of women following breast cancer treatment. / Thesis (Master, Rehabilitation Science) -- Queen's University, 2011-07-22 16:09:35.682

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Syfte: Syftet med litteraturstudien var att beskriva kvinnors, från olika kulturer, erfarenheter och behov av vårdens sociala stöd efter att ha överlevt sin bröstcancer. Syftet var också att kvalitetsgranska den metodologiska aspekten urvalsmetod i de utvalda och granskade artiklarna. Metod: En litteraturstudie med beskrivande design. Resultat: Resultatet av denna litteraturstudie visar att inom informationsstöd hade kvinnorna erfarenheter av informationsbrist gällande fysisk och psykisk hälsa samt informationsbrist från läkare angående biverkningar, riktlinjer samt lymfödem. Det visade sig att kvinnorna hade behov av bättre och mer djupgående information, separata informationssamtal med vårdpersonal och rätt anpassad information vid rätt tidpunkt. Inom emotionellt stöd och värderingsstöd visar resultatet att kvinnorna hade erfarenheter av språkbarriärer och otillfredsställande läkarrelation med bristande helhetssyn. Kvinnorna hade behov av en tilldelad kontaktperson och rehabiliteringsteam, tillgänglighet till vården, extra stöd i både fysisk och psykisk egenvård samt individuella vårdinsatser. Övervägande del av de inkluderade artiklarna hade ett ändamålsenligt urval. Slutsats: Litteraturstudien visar på brister i eftervården till kvinnor som överlevt bröstcancer och lyfter även fram kvinnornas behov av socialt stöd från vården. Kvinnorna uppger att de behöver bättre och mer information, att vårdpersonalen inte uppmärksammar deras psykiska hälsa tillräckligt och att vården i hög grad borde utgå från ett holistiskt synsätt för att möjliggöra en förbättring av eftervården. / Aim: The aim of this study was to describe women, from different cultures, experiences and needs of social care support after surviving their breast cancer. The aim was also to do a quality review of the methodological aspect selection sampling in the selected and reviewed articles. Method: A literature review with descriptive design. Result:  The result of this literature review shows that, within informationsupport, the women experience a lack of information regarding physical and mental health and a lack of information from the doctor about the side effects, guidelines, and lymphedema. It turned out that the women had a need for better and more information, separated information conversations with their health professionals and also the correct adapted information at the right time. Within the emotional support and valuation support the results show that women had experiences of language barriers, unmet relationship with physicians with a lack of holistic approach. The women were in need of an assigned contact-person and rehabilitation team, available healthcare and extra support in both the physical and psychological self-care, individual health care interventions. Mostly of the included articles had purposive samples. Conclusion: The literature review indicatesdeficiencies in the aftercare for women survivors of breast cancer and also highlights women's need for social support from health care. The women stated they need more and better information, that health professionals do not pay attention to their mental health enough and that careshould be based on a holistic approach to enable an improvement after treatment.

Background: Child sexual abuse is a global public health and human rights concern. Despite beinga crime in most countries, and with well-known physical and mental health consequences, the majority of sexual offences are not reported. Child sexual abuse is a maltreatment form characterized by contact or non-contact acts perpetrated by adults or older children toward younger children who have little power to resist. This thesis aims to understand the social context of child sexualabuse, and the perceived roles of parents, community, and key professionals in handling such incidents in urban Tanzania. Methods: A combination of qualitative and quantitative research designs were applied to four sub-studies performed in Temeke district, Dar es Salaam. Qualititative content analysis was conducted on 23 in-depth interviews to describe the perceptions of key professionals and their experiencesof handling cases of child sexual abuse, in addition, eight in-depth interviews with parents to capture their experiences of legal reporting of child sexual abuse incidents. Grounded theory was used to analyse 13 focus group discussions held with male and female community members to explore norm systems and community awareness related to child sexual abuse. Findings from these exploratory sub-studies paved the way for a school survey among 1359 students from 23 randomly selected secondary schools. Using descriptive statistics and multivariate regression analyses, prevalence, risk factors, and health consequences of child sexual abuse were estimated. Results: Lack of working tools and financial support were perceived as major problems among the key professionals. Corruption at community and institutional levels was seen as jeopardizing justice. Community passivity and lack of knowledge about laws regulating sexual offences were identifiedas additional challenges for conducting fair investigations. The community perspective illustrated that children’s rights were challenged by lack of agency. Community awareness about child sexual abuse was clear but there was also a lack of trust in that the healthcare and legal systems were capable of handling such cases. Myths and cultural beliefs justified abuse. Disclosure of abuse was threatened by fear of stigma and discrimination. Parental interviews identified four types of sexual abuse incidents. The type most strongly associated with a determination to seek justice was one with an innocent child. The youth who was forced into sex elicited feelings of parental betrayal. The consenting, curious youth created uncertainty in how to proceed, while the transactional sex youth evoked feelings of parental powerlessness. Shame and stigma, but also fear of perpetrator retaliation and breach of confidentiality, were seen as challenges for disclosure. The school survey showed that 28% (boys=30%, girls=26%) of the students were exposed to child sexual abuse, with boys more often affected than girls. Twenty-six per cent of boys and 19% of girls reported being forced to look at pornography. Forced sexual intercourse was experienced by 9.8% of boys and 8.7% of girls. Abuse increased with age and diminished self-rated health. Perpetrators were most often neighbours, teachers and peers. In contrast, survivor confidants were most often teachers, family members and friends. Most survivors did not want any action taken for the abuse. Proportions of students who perceived having fair/poor health increased with severity of abuse comparing the none-abused (7.0% and 6.3% of boys and girls respectively) with the ever abused (26% and 41% of boys and girls respectively) and those reporting penetrative sex (35% and 53% of boys and girls respectively). Likewise, suicidal ideation and attempts increased with severity of abuse when compared with those not abused. Conclusions and recommendations: Sexual abuse of children poses a devastating social, and public health challenge. In Tanzania neither the community nor the health or legal institutions are adequately prepared to handle these cases. Educating the community, economically empowering women and strengthening the medico-legal system are needed to increase the opportunity for human,legal and fair investigations and reactions. A national child protection system is needed to address the complexities of abuse at different levels and to safeguard the rights of children in Tanzania.

This thesis examines ways in which social policy supported by successive Conservative and Labour Governments has affected the British User/Survivor Movement (BUSM) since the introduction of the 1990 NHS and Community Care Act. It focuses on the formalising effects of community care policy, and the discursive resistance tactics of user/survivor activists in opposition to formalisation of their movement. The aims of the thesis are: firstly, exploration of the contradictory potential of community care policy where there is a formal relationship between local and/or health authorities with mental health services user/survivor-led groups; secondly, tracking New Labour’s policy agenda and the responses of user/survivors; finally, an attempt to develop a user/survivor theoretical standpoint towards community care policy. To achieve these aims the following were undertaken: a literature review which informed the development of a theoretical standpoint; interviews with user/survivor pioneers of the movement; and interviews with discussion groups of user/survivors who were active at local, regional, and/or national level. Analysis of respondents’ statements was completed using a theoretical standpoint based on Feminist/Foucauldian methodology. The chosen methodology resulted in an amended theoretical standpoint to take account of the use of reason by user/survivors and the creation of taxonomies which describe ways in which user/survivors discursively resist formalisation. These results formed the basis for the main conclusions which are as follows: first, user/survivors who engage in ‘consumerist’/empowerment activities, such as advocacy or involvement, can rightly claim to be challenging existing power relations; second, user/survivors entering into formal relationships with health/social services authorities do not necessarily reproduce discriminatory forms of care; third, although the culture of the BUSM has changed since the late 1980s, user/survivor activists are still trying to keep informal/empathic values alive; fourth, a danger exists that user/survivors will be pushed out of providing services and relegated to being the objects of consultation; and finally, there is a need to challenge the reason/unreason dichotomy enabling New Labour to characterise user/survivors as ‘dangerous’. The distinctive focus of this thesis on theoretical standpoint and discursive knowledge provides the basis for its contribution to theoretical and social policy debates in the field of mental health.

This autoethnography uses narrative inquiry within an anticolonial theoretical framework. As a White Italian male settler living on Turtle Island, I bring survivor experience to psychiatric definitions of “psychosis,” or what I call psychosic narrative, and to broader literatures for the purpose of decolonizing “mental” relations. Using reflexive critiques, including feminist antiracism, I question my own privileges as I consider the possibilities of Mad culture to disturb authorizations of practices like forced electroshock and drugging. Using journals, salient themes of experience are identified, including “delusion,” “psychosis,” “madness,” and “illness,” especially as they appear in texts about politics, culture, and theory. A temporally rigorous narrative approach to my readings allows for a self-reflexive writing on such themes in relation with antiracist anticolonial resistance. Thus a White psychiatric survivor resistance to psychiatry and its social (local) history is related to the problematic of global Western neoliberal heteropatriarchy in psychological institutional texts. Survivor testimonies bring critical madness and disability theories as they pertain to racialization and constructions of sex/uality and gender. Rather than present a comprehensive analysis, this narrative inquiry is generated from the process of research as it was experienced in order to represent and question its epistemological grounds.

Breast cancer incidence in Chinese women is rising in North America. However, a critical review of the empirical research reveals a clear under-representation of the breast cancer survivorship experiences of ethnic minority women, particularly those of Chinese origin. A breast cancer diagnosis not only disrupts a woman’s everyday life but also, and more importantly, her self-identity: who she was before the cancer diagnosis and who she becomes after the diagnosis. The purpose of this study was to understand the lived survivorship experience of Chinese women with breast cancer, in particular the way they reconstruct their self-identity while living under the constant threat of premature mortality. A hermeneutic phenomenology was employed to illuminate the essence of the lived experience. A purposeful sample of 24 Chinese women was recruited, and audiotaped face-to-face semi-structured interviews were conducted in English or Mandarin. An iterative process was carried out to identify themes and interwoven them into the four existentials of lifeworld to lend structural meaning to the lived experience. The self-identity of Chinese women living with breast cancer did not fit the current combative survivor identity and narrative as represented in the North America media. Rather, a ‘quiet’, modest and practical narrative underscoring the Chinese virtues of self-reliance, endurance, and social responsibility and harmony characterized their lived experience and self-identity. They endured unexpected major life events and accepted what life offers in an effort to move on with their lives of being a normal person again. An understanding of the way Chinese women manage the impact of breast cancer and their survivorship experience will significantly contribute to building our knowledge about this minority population within the Canadian context. In turn, this understanding will support health care professionals with the development of culturally sensitive psychosocial/supportive care services to maximize adaptation and recovery.

In Australia, up to 80% of individuals diagnosed with childhood cancer are now expected to survive for more than five years after their initial diagnosis. However, survivors of childhood cancer are at risk of developing late sequelae as a consequence of therapies received during childhood. The aim of this study was to determine the incidence of selected late sequelae in a cohort of Australian childhood cancer survivors and identify treatment and genetic factors that may modify the risk of late sequelae in survivors. Our study included 1150 individuals treated for childhood cancer at the Sydney Children??s Hospital between 1962 and 1999, who had remained in remission >3 years and were confirmed to be alive. Rates of mortality and second cancers among survivors were compared against population rates to determine standardised mortality and incidence ratios. Survivors completed a questionnaire on the incidence of adverse health conditions and provided a buccal specimen. Real time PCR was used to detect polymorphisms in genes involved in drug detoxification and transport. Rates of mortality and secondary cancers were found to be 7.5-fold (95%CI 5.4-10.1) and 4.9-fold (95%CI 2.9-8.0) higher among survivors of childhood cancer relative to the general population, respectively, with the highest risks observed for those survivors previously treated for Hodgkin??s disease. Over 60% of survivors reported at least one cardiopulmonary, endocrine or sensory-motor condition following diagnosis of childhood cancer; the most frequently observed conditions included growth hormone deficiency, hypothyroidism, and hypertension. Late sequelae were most frequently reported by females and survivors of brain tumours. Genetic investigations showed that an increased risk of growth hormone deficiency was associated with homozygosity for the GSTM1 null polymorphism, while no gene associations were observed to influence the risk of second cancers among survivors. Our study demonstrates that survivors of childhood cancer are at risk of developing a variety of health conditions as a result of anti-cancer therapies received during childhood. Determining risk factors for late sequelae based on therapy type, lifestyle and genetic predisposition will enable the optimisation of treatment protocols and promote the future well-being of childhood cancer survivors.