Heather McKenzie

The logic of small samples in interview-based qualitative research

In a qualitative framework, research based on interviews often seeks to penetrate social life beyond appearance and manifest meanings. This requires the researcher to be immersed in the research field, to establish continuing, fruitful relationships with respondents and through theoretical contemplation to address the research problem in depth. Therefore a small number of cases (less than 20, say) will facilitate the researcher’s close association with the respondents, and enhance the validity of fine-grained, in-depth inquiry in naturalistic settings. Epistemologically prior to these considerations, however, is the explanatory status of such research. From a realist standpoint, here concept formation through induction and analysis aims to clarify the nature of some specific situations in the social world, to discover what features there are in them and to account, however partially, for those features being as they are. Since such a research project scrutinizes the dynamic qualities of a situation (rather than elucidating the proportionate relationships among its constituents), the issue of sample size - as well as representativeness - has little bearing on the project’s basic logic. This article presents this argument in detail, with an example drawn from a study of persons with a past history of cancer diagnosis and treatment.

Discordant Feelings in the Lifeworld of Cancer Survivors

This article concerns persons who live in uncertainty following an earlier diagnosis of (and completed treatment for) cancer. Fear of recurrence of the disease underlies the uncertainty and the attendant perception of being profoundly endangered, more ‘at risk’ than anyone else. Such a reflective assessment engenders a sense of separation from the everyday ‘practical consciousness’ that seems effortlessly to be shared by ‘ordinary’ others. The mismatch between the interaction order and individual psychology gives rise to interpersonal emotional dissonance, which forms a significant aspect of the chronic suffering contained in the ‘at-risk illness’ experience of cancer survivors. The article examines the emotional patterns involved in their situation and seeks to elucidate the pain that accompanies their alienation from the lifeworld in which nonetheless they must continue to dwell.

Social Realities of Loss and Suffering Following Mastectomy

This article draws on personal accounts of women’s thoughts and feelings following mastectomy. The analysis of the material obtained in multiple, focused interviews has revealed two major themes in these accounts: on the one hand, the loss of bodily symmetry (one of the basic cultural criteria of physical beauty) was deeply felt; and on the other, peace of mind (a characteristic of psychological beauty) was permanently disturbed by the fear of the recurrence of cancer and the possibility of death. While the asymmetrical body is a potentially (socially) visible problem of presentation and representation, the fear of recurrence is a fear of the workings of the body that are not visible and not knowable. A woman who has had a breast removed will concern herself, usually in isolation, with her secret unpredictable interior. This fear will be her very own preoccupation, not only because in our society death and disease are deemed threatening and ugly – but also because the uncertainty of the health-status of a woman following mastectomy is socially (as well as medically) veiled by discourse which assumes that she is ‘well’. Though a woman may feel well, she fears that her body may not be well; yet her fear is necessarily silenced through both social denial and incongruity with experience. The article explores in some detail the nature of the stress that inevitably results in this ill-understood, complex situation.

Wild type and melanoma-associated mutant p16INK4a proteins do not oligomerize in vivo

Dear Sir, The p16INK4a tumour suppressor gene is frequently altered in human cancer and approximately 60 mutations affecting this sequence predispose to melanoma in almost 200 melanoma-prone kindreds (Goldstein et al., 2006). p16 inhibits the activities of cyclin D-dependent kinases, CDK4 and CDK6, to prevent the hyperphosphorylation of the retinoblastoma protein, pRb (Serrano et al., 1993). Accordingly, germline p16 mutants that co-segregate with melanoma have reduced affinity for CDK4 and ⁄ or CDK6, are less effective at limiting pRb phosphorylation and inhibiting cell cycle progression (Quelle et al., 1997; Becker et al., 2001; Parry and Peters, 1996). It has also been suggested that mutant p16 proteins are defective in folding and prone to aggregation (Zhang and Peng, 1996; Cammett et al., 2003; Yuan et al., 1999). In fact, the subcellular distribution of p16 variants is dramatically altered from the homogeneous nuclear and cytoplasmic staining exhibited by the wild type protein to intense speckled or punctate fluorescence that is indicative of aggregation (Rizos et al., 2001; Walker et al., 1999; Zhang and Peng, 1996; Cammett et al., 2003; Yuan et al., 1999). Wild type p16 has also been shown to oligomerize in vivo using non-denaturing polyacrylamide gel electrophoresis (PAGE) analysis and yeast two hybrid binding assays (Tevelev et al., 1996). Oligomerization of wild type p16 was not seen, however, using sedimentation equilibrium analysis under a broad range of conditions (Zhang and Peng, 1996) or gel filtration experiments (Ruas et al., 2007). The potential of wild type p16 to oligomerize has important clinical implications. In particular, a loss-offunction mutant p16, that is prone to aggregation and mislocalization, may interact and interfere with the wild type p16 protein in a ‘‘dominant negative’’ fashion. When we transiently overexpressed FLAG (8 amino acid epitope)-tagged p16 in the U20S osteosarcoma cell line, it not only immunoprecipitated its binding partner CDK4, but also pulled down ectopically expressed HA (hemagglutinin; 12 amino acid epitope)tagged p16, indicating that ectopically expressed p16 proteins interact in vivo (Figure 1A). The potential existence of p16 aggregates was also

Community Nursing Care of Chinese-Australian Cancer Patients: A Qualitative Study.

Background: Providing quality care and support to cancer patients from minority cultures can challenge community nurses when language barriers and cultural complexities intersect with the need for complex care. Objectives: This article reports on a qualitative study that explores interactions between community nurses and Chinese-Australian cancer patients. Methods: The research method focused on particular nurse-patient encounters and involved preencounter and postencounter interviews with the nurse, postencounter interviews with the patient, and observation of the encounters. Participants included community nurses, Chinese cancer patients being cared for at home, and their carers if present. Results: Four themes were conceptualized: (1) the impact of language barriers on nurse-patient interactions, (2) patient understandings of the scope and objectives of healthcare services, (3) cultural complexities and sensitivities, and (4) valued care and support. The study demonstrates that, although many nurses do provide comprehensive, culturally competent care, language barriers can lead to task-oriented rather than comprehensive approaches, and other cultural complexities do have an impact on patient experiences and on the quality of nurse-patient interactions. Nevertheless, most patient participants experienced a feeling of security as a result of regular contact with a community nursing service. Conclusion: Cancer patients with complex care needs but limited English proficiency require support to negotiate complicated community services networks. Culturally competent community nurses can provide this support. Implications for Practice: The study highlights the need for continuing cultural competence education for community nurses and the importance of careful discharge planning to ensure continuity of care for this vulnerable patient group.

A learning and teaching resource on patient self-management of chronic pain.

Objective. To develop, pilot test, and evaluate an instructional module on patient self-management for undergraduate pharmacy students in an Australian university. Design. Learning outcomes and associated content and assessment tasks were developed, featuring lecture and readings, in-class discussions, and online delivery of in-depth interviews with patients who were living with chronic pain. Assessment. Students completed a premodule and postmodule questionnaire and were further assessed by multiple-choice questions following completion of the module and again at the end of the semester. Positive changes were identified in the students’ discourse surrounding patient self-management of chronic pain. Responses to multiple-choice questions showed that knowledge was sustained over the course of the semester. Conclusions. Completion of a comprehensive module on patient self-management increased undergraduate pharmacy students’ understanding and knowledge of patients experiencing chronic pain. The module could be implemented across other healthcare disciplines.

Convergent priorities and tensions: a qualitative study of the integration of complementary and alternative therapies with conventional cancer treatment

PurposeDemand for complementary and alternative medicine (CAM) is high among cancer patients. This, alongside growing evidence for the efficacy of some CAM therapies, is driving change within cancer centres, where evidence-based CAM therapies are increasingly provided alongside standard cancer treatments. In Australia, commitment to equitable access to healthcare is strong, and some cancer centres are now providing integrative services at no cost to the patient. This represents a significant shift in healthcare provision. This study aimed to examine health professional and patient dynamics in an integrated cancer service where CAM is provided at no cost to patients alongside standard cancer treatments. It specifically sought to understand what might drive or hinder further integration of CAM with standard treatment in the cancer context.MethodsQualitative interviews were undertaken with twenty key stakeholders—cancer patients, cancer nurses, and oncologists—who were delivering or receiving care in an Australian public hospital where acupuncture services are provided at no cost to patients alongside standard chemotherapy and radiation treatments.ResultsFindings point to key areas where the concerns and priorities of cancer patients, cancer nurses, and oncologists converge and diverge in ways that reflect core personal and professional interests regarding patient care needs, the evidence base for CAM efficacy and safety, and rising healthcare costs.ConclusionsUnderstanding points of convergence and divergence could assist clinicians and service providers in negotiating ways forward for integrative cancer services.

The integration of formal and informal care provision: An exploratory study of the experiences of primary support persons of chemotherapy outpatients

Introduction : The integration of health and social care for individual patients depends, in many circumstances, on the involvement (as care providers) of their informal carers or primary support persons. This paper reports on an Australian study exploring the experiences of primary support persons of chemotherapy outpatients. Despite overt reliance on informal/family care provision, and the crucial role of carers in enabling integration of health and social care, little is understood of (i) the impact of this care provision on patient outcomes; (ii) the extent to which primary support persons of chemotherapy outpatients feel the care they provide is well integrated into the overall pattern of service delivery, and (iii) the social, emotional, economic, and physical effects for people providing this care. Theory/Methods : An exploratory, qualitative research design was utilised and a convenience sample of seventeen participants was recruited through the cancer centre at a large tertiary hospital. In face-to face, semi-structured interviews, participants were asked to identify issues of importance to them as a primary support person of someone receiving chemotherapy, and to provide specific information about their experience of the days following chemotherapy administration. Content analysis led to the emergence of three significant themes. Findings : These themes include: (i) frightened novice to reassuring expert – reflecting the urgency with which primary support persons feel they must develop cancer and chemotherapy related skills and knowledge in order to become an effective care provider; (ii) watching and waiting - encapsulating the range of experiences, from intense vigilance to secretive, monitoring of physical and emotional wellbeing, and (iii) discordance and invisibility – highlighting the extent to which participants felt their support role – although clearly critical to patient wellbeing – is not formally recognised by health professionals and not integrated into the overall pattern of service delivery. Discussion : The overarching conceptualisation of the informal carer role as a ‘shadowing’ role reflects the ways in which the three themes are connected. This study demonstrates that informal carers in this context do not experience their role as being well integrated into established care pathways, or recognised as a significant enabler in the integration of health and social care, including their role in supporting patient self-management strategies, provision of context-specific knowledge, and ensuring that care is person-centred and time efficient. Although this study focuses on one specific clinical area, many aspects of this informal carer experience are likely to be shared by carers of people with other serious health issues. Further research to determine strategies for better recognition of the potential contribution of informal carers to provision of effective integrated care is needed.

My time; your time; the time of living with myeloma

Abstract of a poster presentation presented at the Joint Meeting of the COSA 39th Annual Scientific Meeting and IPOS 14th World Congress of Psycho-Oncology, 13-15 November 2012, Brisbane Convention and Exhibition Centre.

The turn to inwardness and cancer survivorship

Abstract In this paper I examine the relationship between the notion of inwardness—the idea of attending to oneself as inner—and the subjective experience of cancer in western societies. I argue that this historically limited mode of self-interpretation is rooted in the Augustinian theoretical formulation of personhood in terms of inner and outer, and that it is from within this frame of reference that modem persons attempt to find their bearings. Referring to a study of cancer survivors—here, people who have experienced one episode of cancer and have hopes, though no assurances, that the disease will not recur—I argue that individual responses to this existential situation can be profoundly affected by the inwardness of radical reflexivity. This frame of reference can take on a heightened significance for cancer survivors when a connection is made between the notion of an inner self and personal health. Taking this into account deepens our understanding of how cancer survivors reflect on, and creatively negotiate, the social contexts that they confront.