Disparities in cancer care: perspectives from the front line.

OBJECTIVE: The purpose of this qualitative study was to investigate how frontline healthcare professionals witness and understand disparity in cancer care. METHOD: Six healthcare providers from a range of care settings, none with < 15 years of frontline experience, engaged with researchers in an iterative process of identifying and reflecting on equity and disparity in cancer care. This knowledge exchange began with formal interviews. Thematic analysis of the interviews form the basis of this article. RESULTS: Participants drew attention to health systems issues, the meaning and experience of discontinuities in care for patients at personal and community levels, and the significance of social supports. Other concerns raised by participants were typical of the literature on healthcare disparities. SIGNIFICANCE OF RESULTS: Providers at the front lines of care offer a rich source of insight into the operation of disparities, pointing to mechanisms rarely identified in traditional quantitative studies. They are also well positioned to advocate for more equitable care at the local level.

"I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care.

Social expectations surrounding sickness have undergone a transformation in Western welfare states. Emerging discourses about patients' roles and responsibilities do not however always map neatly onto patients' actions, experiences or desires. This paper emerges from a study in Ontario, Canada. Drawing on in-depth interviews with 5 women diagnosed with breast cancer we explore the activity and effort prompted for patients by the routine professional practice of outlining treatment options and encouraging patients to choose between them. We highlight research participants' complex responses to their responsibility for treatment decisions: their accepting, deflecting and reframing and their active negotiation of responsibility with professionals. The literature on treatment decision making typically characterizes people who resist taking an active role as overwhelmed, misinformed about the nature of treatment decisions, or more generally lacking capacity to participate. In this paper we suggest that patients' expressions of ambivalence about making treatment choices can be understood otherwise: as efforts to recast the identities and positions they and their physicians are assigned in the organization of cancer care. We also begin to map key features of this organization, particularly discourses of patient empowerment, and evidence-based medicine.

Why women delay seeking assistance for locally advanced breast cancer.

Locally advanced breast cancer (LABC) occurs in 10% to 30% of all new primary breast cancer diagnoses. For reasons that are not well-understood, 20% to 30% of women with breast cancer (at all stages) wait eight weeks or more from the time they notice the breast symptom(s) to when they seek assistance from a health care provider. Comprehending the mechanisms that support the health appraisal and health seeking behaviour is paramount and not well understood, particularly for women with LABC. The purpose of this study was to qualitatively explore the cognitive, emotional, and contextual experience of women with locally advanced breast cancer in the time between symptom discovery and seeking health care. In-depth qualitative interviews and a cross-case, content analysis revealed that the participants delayed their search for assistance because they did not perceive themselves to be at risk for developing breast cancer, had a symptom other than a lump, and so misattributed or minimized the gravity of the symptom, had a previous experience with a benign tumour, and/or were experiencing concurrent stressful life events. These participants were motivated to seek attention if they had an already scheduled appointment with a health professional for another matter, felt the symptom worsen over time, or were motivated by a loved one to seek help. Implications for health promotion and for education with women with benign breast disease, as well as the general public, are discussed.

"Below their notice": exploring women's subjective experiences of cancer system exclusion.

BACKGROUND: The experiences that marginalized breast cancer populations have in common are rarely considered. METHODS: The authors look across 3 qualitative studies to explore the experiences of older, lower-income, and Aboriginal women diagnosed with cancer and treated by the cancer care system in Ontario, Canada. RESULTS: The research examines critical moments in participants' narratives that parallel one another and are categorized within 2 themes: Not Getting Cancer Care and Not Getting Supportive Care. CONCLUSIONS: Although exploratory, the findings merit attention both for what they tell us about women's experiences, and because they suggest disparities in access to treatment and psychosocial support.

Reflecting on spirituality in the context of breast cancer diagnosis and treatment.

In this first part of a longitudinal study, women were asked to reflect on the meaning of spirituality in the first year following diagnosis of breast cancer. Twenty-two women were interviewed at approximately one year post-diagnosis. This paper reports on a thematic analysis of these interviews. Participants' responses reflected three higher-order themes: relationship with a higher power, a deepening sense of self, and spiritual connection with others. The findings provide an enhanced understanding of how spirituality frames and impacts (both positively and negatively) the experience of breast cancer immediately following diagnosis and treatment. Most participants in this study found strength and support in their experiences of spirituality. They also spoke at times of feeling disconnected from or abandoned by God. The paper concludes with a discussion of how cancer health professionals might respond to the spiritual needs expressed by women living with cancer.

'Nothing fit me': nationwide consultations with young women with breast cancer.

OBJECTIVE: There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. SETTING AND PARTICIPANTS: We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. MAIN RESULTS: The overarching theme, 'Nothing Fit Me', revealed that accessed information, support and programmes/services did not 'fit' or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health-care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. CONCLUSION: The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer.

Chronicity of challenging behaviours in people with severe intellectual disabilities and/or autism: a total population sample.

The skills, social impairments and challenging behaviours of a total population of 166 children, with severe intellectual disabilities and/or autism, were assessed through interview with the main carers, when the children were under 15 years old (time 1). Twelve years later, 141 of these individuals were re-assessed, using the same measures (time 2). "Abnormal" behaviours tended to reduce with age and were associated with poorer language skills and poorer quality of social interaction. Individuals with most abnormal behaviours at time 1, tended to have most at time 2. Abnormal behaviour at time 2 was predicted by the presence of abnormal behaviour at time 1, poor expressive language at time 1, poor quality of social interaction at time 1 and a diagnosis of autism/autistic continuum at time 1.

A consultation with Canadian rural women with breast cancer.

OBJECTIVE: Relatively little research has been carried out on the health and supportive care needs of rural women living with breast cancer. In this study, results from a Canadian focus group study are used to highlight issues of importance to rural women. SETTING AND PARTICIPANTS: A total of 276 rural women with breast cancer divided into 17 focus groups participated in the study conducted across Canada. A standardized protocol for discussion was employed. Issues of access to information, support and services were discussed, with women describing their experiences in trying to find appropriate programmes and services. MAIN RESULTS: The major theme identified through analysis of qualitative data was 'becoming aware of and/or gaining access to health care information, support and services.' Other major themes included: (1) dealing with isolation; (2) having to travel; (3) feeling the financial burden and (4) coping with changing work. CONCLUSIONS: Rural women with breast cancer have supportive care challenges related to their circumstances. A series of recommendations were generated through the consultation process which are contributing to the development of a national strategy focusing on the development and extension of programmes for rural women with breast cancer. Although the research on the project was not to specified standards, and suffered from less attention than community capacity building and advocacy, it proved to be of worth and revealed potential benefits from collaborations between researchers and community organizations.

Post-migration changes in gender relations among Ethiopian couples living in Canada.

The Ethiopian community ofToronto, Canada, has identified the prevention of marital conflict and partner abuse as a priority issue. Previous research and community discussions suggested that changes in gender relations following migration contribute to both marital conflict and partner abuse. The objective of this community-based pilot study was to explore post-migration changes in gender relations among Ethiopian couples in order to inform the development of violence-prevention strategies. Qualitative research methods and analyses were used. In-depth interviews and focus-group discussions were conducted with 8 couples who had been married in Ethiopia and migrated to Toronto. The findings indicate changes in gender relations following migration as well as concordant and discordant patterns of change. Change was found to be associated with factors such as age, number of years married, experience in a third country, and gender-role socialization. Implications for future research and nursing practice are discussed.

Changes in social impairment for people with intellectual disabilities: a follow-up of the Camberwell cohort.

The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple "socially impaired" versus "sociable" dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed.