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This brief chapter explores my experiences with music and death throughout my cancer treatment. Though I constantly confronted my mortality throughout my cancer treatment, music also helped to distract me from unpleasant, lengthy or boring treatments, as well as helping me to process my feelings about my own mortality. It thus served two distinct purposes, both focusing my mind on death and pain and distancing me from it.

This chapter focuses on the differences that younger, middle-aged, and older women with breast cancer experience, particularly in health knowledge and treatment. These differential experiences, in part, stem from our youth oriented culture. This ideology extends into medicine and can affect day-to-day medical practice. Differential experiences are, therefore, likely to result in inequality and disparity in health and in healthcare. It is argued that older women are less empowered than their younger counterparts to display the same degree of agency. This analysis has important implications for health care professionals in the treatment of older women with breast cancer.

This research explores how gender influences the experience of cancer care and proposes a new explanation for gender differences in posttraumatic growth among individuals who received blood or marrow transplantation as treatment for lymphoma.

We use mixed methods, combining quantitative examination of surveys with 180 survivors with qualitative findings from semi-structured face-to-face interviews with 50 survivors. Participants were 2–25 years after transplantation. Quantitative data were analyzed using statistical modeling; qualitative data were analyzed using thematic coding.

A quantitative examination indicates that compared to men, women report greater posttraumatic growth and more positive impacts of cancer despite having lower physical health. These gender differences are robust even after controlling for physical and emotional well-being, life satisfaction, and social support. Qualitative findings from in-depth interviews show that gender norms and expectations about masculinity and femininity shape how individuals experience illness and perform the role of patient and survivor. Expectations about being a good patient and survivor are more aligned with expectations about femininity and tend to conflict with expectations about masculinity. Gender norms discourage men from reporting personal growth from cancer and encourage women to overemphasize the positive aspects of having had cancer.

This study was conducted two or more years after treatment had ended; therefore, potential for recall bias existed. Nevertheless, the findings suggest that viewing cancer as transformative is part of a gender performance that limits opportunities for individuals to experience and express a diverse range of reactions which, at times, increases the emotional burden on individuals.

By combining survey data with in-depth interviews, the study offers new insights into the causes of gender differences in the reporting of patient outcomes after illness.

Purpose – Objective measures of a new treatment's expected ability to improve patients’ health are presumed to be significant factors influencing physicians’ treatment decisions. Physicians’ behavior may also be influenced by their patients’ disease severity and insurance reimbursement policies, firm promotional activities and public media reports. This chapter examines how objective evidence of the incremental effectiveness of novel drugs to treat cancer (“chemotherapies”) impacts the rate at which physicians’ adopt these treatments into practice, holding constant other factors.

Design/methodology – The novelty of the analysis resides in the dataset and estimation strategy employed. Data is derived from a United States population-based chemotherapy order entry system, IntrinsiQ Intellidose. Quality/price endogeneity is overcome by employing sample selection methods and an estimation strategy that exploits quality variation at the molecule-indication level. Pooled diffusion rates across molecule-indication pairs are estimated using nonparametric hazard models.

Findings – Results suggest incremental effectiveness is negatively and nonsignificantly associated with the diffusion of new chemotherapies; faster rates of diffusion are positively and significantly related to low five-year survival probabilities and measures of perceived clinical significance. Results are robust to numerous specification checks, including a measure of alternative therapeutic availability. We discuss the magnitude and potential direction of bias introduced by several threats to internal validity. Evidence of incremental effectiveness does not appear to motivate the rate of specialty physician diffusion of new medical treatment; in all models high risk of disease mortality and perceptions of therapeutic quality are significant drivers of physician use of novel chemotherapies.

Value/originality – Understanding the rate of technological advance across different clinical settings, as well as the product-, provider-, and patient-level determinants of this rate, is an important subject for future research.

Purpose – The goal of this chapter is to understand the role of nonprofit voluntary health organizations (VHOs) in the lives of Canadian women coping with breast cancer.

Methodology – Through qualitative interviews with breast cancer survivors and records of VHOs active in this field, we assess the level and nature of their interactions and impact on women's quality of life.

Findings – Our findings suggest that at the micro-level, VHOs are venues for women to receive auxiliary services such as information, counseling, and support that complement the mainstream health care provision. While VHO services empower women as health care consumers, we show that they also serve as venues for women to reciprocate by volunteering. This process of reciprocity helps women cope with their own healing and allows them to be not only consumers but also producers of health services.

Research limitations – The non-random nature and the small sample size make our findings not easily generalizable to the larger population of breast cancer survivors; rather they are indicative of the experiences of Canadian women in one large urban metropolitan area.

Value of the chapter – We demonstrate the role of VHOs as venues of health consumerism as well as places for consumers to become involved in the production of services by volunteering.

Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences.

Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69).

By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others.

Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions.

By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.

To examine the lived experiences of the biological adult daughters of women with breast cancer.

Family systems theory and phenomenology were used to guide this exploratory, qualitative study. Qualitative data were collected via one-time, semi-structured interviews with adult daughters of women with breast cancer.

Predominant themes included: close mother–daughter relationships, untimely disclosure of information, attentive fathers, optimistic outlooks, and influences on participants’ intimate relationships. Perceived strong familial and intimate relationships prior to breast cancer diagnosis helped ensure that mother–daughter relationships would remain strong, or even improve. Fathers’ attentiveness to mothers was pivotal in determining positive and negative attributes in daughters’ own intimate relationships.

Based on the findings from this study, family scientists and healthcare professionals may have a better understanding of the patients’ young adult daughters’ concerns throughout breast cancer treatment and follow up.

Daughters may be at a loss when their mothers are diagnosed with breast cancer. Healthcare professionals can be equipped to recognize these signs when meeting with patients and families, offer suggestions for family members’ coping, and encourage daughters to consider their own breast cancer risk and screening.

This study will provide a new insight into the experiences of daughters of women with breast cancer, and help family and health professionals understand how to support the relatives of breast cancer patients.

Purpose – The purpose of this chapter is to explore whether and how social tagging can be useful in an information web site for cancer patients and their relatives.

Methodology/approach – Three studies have been carried out in order to investigate the research questions. First, we reviewed and analyzed literature about cancer patients’ information needs and seeking behavior, and about social tagging and patient terminology. Second, we analyzed tags applied to blog postings at Blogomkraeft.dk, a blog site at the Danish information web site Cancer.dk. The tags were compared with the formal browsing structure of Cancer.dk. Results from the two studies were used to develop a prototype for social tagging at Cancer.dk. Thus third, we evaluated the prototype in a usability study.

Findings – We found that tags have the potential to describe and provide access to web site content from the users’ perspective and language use. Social tags may be a means to bridge between scientific viewpoints and terminology and everyday problems and vocabulary. Tags at Blogomkraeft.dk are mainly factual, often detailed, and do not cover as many functions as tags in more general bookmarking systems. An important finding is that some tags seemed to add to and supplement the content instead of factually describing the content of a blog posting. The usability test showed that our test persons liked the tagging feature.

Social implications – Tagging features give the public an opportunity to apply their own terms to documents, reflecting their own model of the current topic. Tags may furthermore function as colloquial lead-in terms from users’ search formulations at search engines such as Google to the domain-specific, tailored cancer web site.

Originality/value – Unlike most research on social tagging so far, we investigate tagging in a domain-specific setting, how tags can improve the interaction and communication between layman users and domain experts in an information web site within health care.

The health industry is rapidly adopting digital services and face-to-face offerings are being replaced by e-services. One example is peer-to-peer survivor networks for cancer patients. This study investigates the virtual exchanges in survivor networks and whether these exchanges are valued for economic, symbolic, or expressive worth. The research seeks to address whether the alleviation of loneliness is possible.

The qualitative work in this study utilizes netnographic explorations and in-depth interviews with cancer survivors, average age 62, to investigate the social exchange continuum in peer-to-peer online patient survivor networks.

This study shows that technological innovations can aid survivorship when the exchanges are meaningful. Meaningful interactions within gift systems are valued for expressive worth and are established upon the notion of selfless gifts where the giver expects nothing in return. For networks to operate via expressiveness, informants must be open and vulnerable to others. Findings show that biographical narratives are useful tools for creating an expressive environment and givers become more giving after engaging in selfless acts. The intangibility and immaterial nature of virtual gifts creates a collective identity and fosters an aggregate extended self.

Implications emphasize the need among survivors of trauma to connect with others. Digital technologies allow connections on a global scale, so survivors can find others with similar needs. Peer-to-peer networks provide a way for survivors to meet, interact with, and extend their aggregate selves through other survivors, while experiencing a transcendent sense that they are part of something bigger than self alone.