The challenging complexities of cancer care

We find cancer care to be an inspiring field of research, in part due to its complexity and breadth. These characteristics are reflected in the wide variety of disciplines involved in care provision − for example, from nurses, physicians, physio, occupational and speech therapists and dieticians through to social workers, clergy and psychologists. The number of disciplines engaged in research in cancer care is even more expansive, with ethicists, sociologists, anthropologists and others all making important contributions tofurther our understanding of the many challenges involved in cancer-related situations. Research is needed from a variety of perspectives, exploring the situation, experiences and views of different stakeholders − patients, potential patients, family members and other significant others, as well as professional care providers and policy makers. The articles in this theme issue of Scandinavian Journal of Caring Sciences illustrate some of the present diversity of cancer care research. There is methodological variation, with articles by Soothill et al. and Jakobsson based on data generated from questionnaires, and the other contributions relying primarily on qualitative interview data. Qualitative analysis of the interview data has also been guided by different perspectives and methods evolved in different settings − approaches have varied from relatively ‘generic’ qualitative analysis to those influenced by grounded theory, initially described and developed in the USA (Wennman-Larsen & Tishelman; Landmark et al.), toa method originating in Sweden, phenomenography (Koinberg et al.), and a model of phenomenology inspired by work in Vancouver, Canada (Lindholm et al.). Different sources of data have been combined in Yeh's paper and both qualitative and quantitative analysis have been utilized by Adamsen in efforts to better understand the issues under investigation. On the other hand, there are also some commonalities in the research designs presented here; it is notable that these cancer-related articles are primarily descriptive, aiming to further our basic understandings of the selected issues. The articles in this issue also represent different stakeholder perspectives in regard to a variety of substantive issues in cancer care (1). The perspectives of people experiencing cancer is a natural focus; the articles by Koinberg and colleagues and Landmark et al. both explore different aspects of support in Scandinavia − professional and informal − for women diagnosed with breast cancer. In her paper, Yeh aims to develop a conceptual framework of the life experience of adolescents with cancer in an Asian context. Adamsen's article, based on work from Denmark, examines the ways in which self-help groups might prove useful, not only for people with cancer, but also for those diagnosed with AIDS. Research from Southern Sweden by Jakobsson focuses both on men with prostate cancer and on men with nonmalignant prostate hyperplasia, investigating quality-of-life issues related to the commonly occurring but rarely explored use of indwelling catheters. Soothill et al. expand their stakeholder perspectives not only to survey the relationship between needs and faith in patients with cancer, but also to examine this issue from the perspective of informal care-givers. While Lindholm et al. share this double perspective in data collection for their study, their article in this issue primarily addresses the suffering experienced by significant others, and the perspective of family care-givers is the sole focus of the article by Wennman-Larsen & Tishelman. But diversity in research may also have less positive sides. In a recent report on basic research in nursingpublished by the Swedish Nursing Association (2), Lehtinen et al. caution that eclecticism in extreme can be negative − they point out (in relation to theoreticaleclecticism) that there is a risk it might lead to superficiality, simplification and lack of consistency. This is a warning that we take to heart, based on our experiences conducting research in cancer care. How can the research diversity evidenced here become most productive? How can we maintain multiple voices and explore many issues, but also promote convergence with the aim of establishing a body of common knowledge with both theoretical and clinical value? In Scandinavia, research conducted in the caring sciences has not traditionally been conducted in large research groups. Perhaps some of the trends in cancer nursing research in the UK during the past 10 years can provide inspiration. Corner described how criticisms of nursing research as overly descriptive and lacking programmatic focus has resulted in increased clarity of the issues and difficulties in promoting research activity in cancer care, through a process of negotiated consensus (3, 4). Development of a first working definition by this consensus group aided in clarifying a ‘distinct and complementary orientation to medical research’ (4). The group then formulated two broad areas recommended to be the focus of research activity (1): studies related to patients and their problems, including systematic assessment andmanagement of these problems, and (2) experiences and needs of different stakeholders, including methods of facilitating coping and adjustment to cancer. These areas seem to be broadly formulated to allow for breadth and variation, while encouraging common focus in developing research-based knowledge. This UK-based group also recommended promotion of common and coherent research programmes, suggestinguse of a multiphase systematic research process, not dissimilar to the phases involved in clinical trials for anticancer agents. The first phase suggested involves exploration of a problem, through descriptive study. Asecond phase builds on the understanding forthcoming from the first phase, and consists of development and piloting of interventions addressed at alleviating the problem. The third phase is suggested to consist of formal evaluation of the intervention, using a variety of methods including clinical trials, and preferably conducted through multicentre studies (3, 4). Corner's description of efforts in the UK to consolidate research in cancer care is only one of many possible scenarios, illustrating the need for increased systematic progression in research efforts and increased collaboration. Our intention is not to offer this as a prescription for the future, but rather as food for thought. Research in cancer care has a self-evident role to play in the future, as the incidence of cancer is expected to rapidly increase along with rapidly ageing populations. Researchers in this field have a clear social mandate as well, as the importance of research on cancer care, both prevention and palliation, is generally accepted by the public as well as by professionals and policymakers. On the other hand, the seriousness and complexity of the issues at stake encourage more effective use of increasingly limited resources. We encourage our colleagues, the readers of this journal − clinicians, educators, researchers and policymakers − to continue to find ways of creatively greeting the challenges of future cancer care. We are convinced that by working together in new ways that transgress existing borders − national borders, disciplinary borders, borders between practice, research and education, as well as methodological borders − we will manage to conduct research that increases the breadth, depth and variation in the impact made on all involved stakeholders, in theory and in practice!

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