Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival?

BACKGROUND: There are wide international differences in 1-year cancer survival. The UK and Denmark perform poorly compared with other high-income countries with similar health care systems: Australia, Canada and Sweden have good cancer survival rates, Norway intermediate survival rates. The objective of this study was to examine the pattern of differences in cancer awareness and beliefs across these countries to identify where these might contribute to the pattern of survival. METHODS: We carried out a population-based telephone interview survey of 19079 men and women aged ≥ 50 years in Australia, Canada, Denmark, Norway, Sweden and the UK using the Awareness and Beliefs about Cancer measure. RESULTS: Awareness that the risk of cancer increased with age was lower in the UK (14%), Canada (13%) and Australia (16%) but was higher in Denmark (25%), Norway (29%) and Sweden (38%). Symptom awareness was no lower in the UK and Denmark than other countries. Perceived barriers to symptomatic presentation were highest in the UK, in particular being worried about wasting the doctor's time (UK 34%; Canada 21%; Australia 14%; Denmark 12%; Norway 11%; Sweden 9%). CONCLUSION: The UK had low awareness of age-related risk and the highest perceived barriers to symptomatic presentation, but symptom awareness in the UK did not differ from other countries. Denmark had higher awareness of age-related risk and few perceived barriers to symptomatic presentation. This suggests that other factors must be involved in explaining Denmark's poor survival rates. In the UK, interventions that address barriers to prompt presentation in primary care should be developed and evaluated.

Lay perspectives on the use of biologically based therapies in the context of cancer: a qualitative study from Sweden.

WHAT IS KNOWN AND OBJECTIVE: Biologically based therapies (BBTs) such as herbal medicines represent the most commonly used type of complementary and alternative medicine by cancer patients. There is a paucity of data regarding individuals' motives for starting and continuing use of BBTs in cancer. Our objective is to explore lay perspectives on use of BBTs in cancer. Our hope is that the data generated will support pharmacists and other professionals in improving their communication about BBTs with patients. METHODS: Interviews with 12 individuals with cancer who used BBTs were analyzed with interpretive description and framework analysis, to build on previous literature and gain new knowledge of clinical relevance. RESULTS: The findings suggest that users are motivated to continue to use BBTs when they experience these as both effective and harmless. Perceived effects of BBTs include a wide range of responses such as improved physical and psychological well-being, and cancer-related benefits. These experiences go beyond the legal health and medical claims for these products. The findings indicate that users' views of side-effects, ascribed to BBT use, are situation-dependent with the potential to either facilitate or hinder continued BBT use. WHAT IS NEW AND CONCLUSION: Our results indicate the importance of acknowledging users' own views of BBTs to improve patient-provider communication. This should aid the design of more effective BBT surveillance systems and hence increase patient safety and satisfaction.

Obstetric care at the intersection of science and culture: Swedish doctors' perspectives on obstetric care of women who have undergone female genital cutting.

Providing healthcare for women having undergone female genital cutting can present challenges. The women might require special obstetric care, including an anterior episiotomy (defibulation) for infibulated women. This paper explores how Swedish doctors caring for these women describe, explain and reason about their care and relevant policies in a Swedish context. A qualitative study was carried out with 13 chief/senior obstetricians and seven senior house officers. There was little consensus among the interviewed doctors on what constitutes good obstetric care for women with FGC or how care should be provided. Major problems include: inconsistent policy and praxis; uncoordinated care trajectories; diffuse professional role responsibilities; difficulties in monitoring labour and fetal status; and inhibited communication. The data highlight the need for increased awareness and reflective praxis both on the part of individual practitioners, and on an organisational level, which takes account of the special needs of different users.

The use of artificial nutrition among cancer patients enrolled in palliative home care services.

In this study, patients' views and experiences of using home artificial nutrition, and factors associated with use of home parenteral nutrition (HPN) were investigated. Structured telephone interviews with 620 cancer patients enrolled in 21 palliative home care services were analysed. HPN was more common (11%) than home enteral tube feeding (HETF, 3%). Home artificial nutrition (including HPN and HETF) was usually introduced more than four months before death. Three of four HPN recipients also had oral food intake. HPN use was associated with eating difficulties, nausea/vomiting, and fatigue rather than gastrointestinal problems per se. HETF was generally used for patients with problems related to oesophagus and head and neck tumours. In conclusion the results suggest that, contrary to existing guidelines, HPN is used to supplement oral intake, and not only for patients with a non-functioning gastrointestinal tract.

Using undergraduate nursing students as mediators in a knowledge transfer programme for care for patients with advanced cancer.

Nursing today faces numerous challenges. Societal changes lead to reorganization of health care, changing workloads with sicker patients in hospital and home care, and limited economic resources. The increasing and changing nature of knowledge needed for expert care provision challenges nurses to continually update their competencies. These are issues demanding proactive and dynamic changes in the way nurses conceive their mandates and practice. The aim of the action-research project presented here was to foster improved quality of care for patients with advanced cancer through collaborative endeavours integrating cancer nursing clinical practice, research and education in a knowledge exchange programme. The programme was based on input about caregiving needs from multi-professional staff caring for patients with advanced cancer in a variety of healthcare settings. Undergraduate baccalaureate nursing students were then engaged in literature studies to help address these needs. Results of the studies were communicated back to the involved clinicians in a variety of ways. In this paper, we discuss what we have experienced as opportunities and obstacles in conducting the project, based on our reflections and external evaluations. This is linked to a broader discussion of ways of integrating cancer nursing research, education and practice.

Factors related to participation in a cervical cancer screening programme in urban Sweden.

Fifty-six per cent of invited women aged 25-60 attended the Population-based Cervical Cancer Screening Programme (PCCSP) in Stockholm, Sweden in 1994-1996. The objective of this study was to explore factors related to participation in this PCCSP. Registry data on all women aged 25-60 invited to the PCCSP from 1994 to 1996 (n=307,552) was matched with a national longitudinal population database. Women in the youngest age group (25-29 years old) were found to be less likely to participate in the PCCSP than women in older age groups. Married women or widows attended the programme more often (OR 1.32, 95% confidence interval (95% CI) 1.29-1.34 and OR 1.36, 95% CI 1.27-1.45, respectively) than did single women. Women in the labour force were more likely to participate than those who were not in the labour force (OR 1.82, 95% CI 1.78-1.87). The participation rate was not lower for immigrant women from developing countries than for those born in Sweden. We found that age, marital status and being in the labour force or not are factors associated with participation in the cervical cancer screening programme.

Rationales for attending or not attending mammography screening--a focus group study among women in Sweden.

Quantitative findings regarding factors that affect attendance in population-based outreach mammography programmes need to be complemented by descriptive data. The aim of this study was to obtain descriptive insights into the meanings that Swedish women attach to mammograms and their rationales for attending or not attending mammography screening. For this purpose a total of 31 women were recruited to eight focus group discussions. Through inductive analysis, six main themes were identified as important issues in reasoning about attendance or non-attendance in mammography screening: negative experiences, perceived risk factors, knowledge of one's own body, perceived problems with mammography, political, ideological and moral reasoning, and involuntary non-attendance, due to the inability of the screening programme to cover some women (e.g. those with breast implants). In conclusion, there is a need to reinforce the information that mammography is an examination aiming at detecting lumps at an asymptomatic stage. However, the nature and amount of information the women themselves desire is inconsistent. Furthermore, the personal encounter between the individual woman and the staff seems to be of particular importance. An improved dialogue appears an attractive way of adapting the screening situation to meet the varied needs and expectations of the women who are invited.

Self-reported symptom distress in cancer patients: reflections of disease, illness or sickness?

This article examines the relationships between symptom distress in a heterogeneous group of cancer patients and a number of possible explanatory variables, categorized as demographic, medical/clinical, individual/psychosocial and variables related to patients' views of care provided by the health care system. A series of explorative multiple regression analyses were undertaken to this end. The data are derived from a cross-sectional study of cancer patients diagnosed in 1987 at one general hospital in the greater Stockholm area, using semi-structured interviews in conjunction with McCorkle and Young's Symptom Distress Scale, Antonovsky's Sense of Coherence Questionnaire, Cutrona and Russell's Social Provisions Scale and Smilkstein's Family APGAR. Symptom distress is studied as a cumulative index, as well as in terms of the sub-indexes of pain, appetite/nausea, functional aspects, psychological aspects and social aspects. When the four categories of explanatory variables are combined, considerably higher levels of variance are explained for all 6 indexes of the Symptom Distress Scale, than when the regression analyses are performed separately with each distinct category of explanatory variables. This provides a statistical illustration of the multifaceted and complex nature of symptom distress. The data are presented in the context of a conceptual discussion about the meaning of symptoms. Symptom distress, in this study, appears to reflect both personal and cultural experiences, that is 'illness' and 'sickness' processes, rather than primarily medical/clinical variables, or 'disease'. Antonovsky's salutogenic model is suggested as a fruitful framework for further analysis.

Who cares? Patients' descriptions of age-related aspects of cancer and care in Stockholm.

This exploratory study examines the situation of a heterogeneous group of 46 cancer patients from one general hospital in the Stockholm area who were diagnosed with a malignant disease in 1987. Forty-six patients were interviewed to determine how they experience and cope with their sickness. Although age-related issues were not directly addressed by the interviewer, they were frequently commented upon by the respondents. A questionnaire was also used to quantify various psychosocial aspects of the individual's cancer experience. Quantitative and qualitative data were used in a complementary fashion. The patients interviewed ranged in age from 29 to 88 years (median 61). Issues related to age were frequently addressed spontaneously by the interviewed persons, which led to further exploration of age-related aspects of care. Although few age-related differences in symptom distress were found, some differences were seen in patients' perceptions of the response of the professional health-care system. The older patients related that they have less quantitative contact with specialized formal resources, and perceive less sense of engagement and concern from the professional health-care sector. The qualitative analysis suggests that age may be used by patients as an explanatory factor in a variety of situations, functioning as a means of "making sense" of sickness experiences.

Measuring symptom distress in patients with lung cancer. A pilot study of experienced intensity and importance of symptoms.

Patients with cancer experience high levels of symptom distress. Current measures of symptoms generally weight the importance of each symptom equally, and do not generally address the relative importance of different symptoms to patients. The purpose of this pilot study was to explore whether the assumption of equal weighting is warranted in measurements of symptom distress. Consecutive patients presenting with primary lung cancer at the Lung Medicine Unit of one Swedish hospital completed the Symptom Distress Scale and a Thurstone scale eliciting patients' weightings of the symptoms' relative importance three times: after first contact with the unit, then 1 and 2 months later. The results show that subjects weighted some symptoms as significantly more important than others, and the ordering of symptoms was found to differ by intensity and perceived importance in this group. Outlook was the symptom rated most important at T1. Fatigue received the highest intensity score, but ranked second lowest in importance. Kendall's coefficient showed minimal agreement among these patients as to the specific order for the weighting of the importance of symptoms. In addition to theoretical relevance, this issue is clinically relevant in selecting symptoms that should be the focus of intervention and in determining how the success of interventions should be judged.

Midwives' descriptions of their familiarity with cancer: a qualitative study of midwives working with population-based cervical cancer screening in urban Sweden.

Nurse-midwives are responsible for taking Papanicolaou (Pap) smears in Swedish population-based cervical cancer screening programs. A research project examining the screening program from the perspective of different stakeholders includes an interview study of 21 midwives working in Stockholm. This article explores the way the midwives describe cancer-related knowledge and aspects of screening, contrasting this with relevant findings from a substudy of 66 healthy women participating in screening. A semistructured interview guide with open-ended questions was used to investigate ideas about benefits and risks in the screening program, risk factors for cervical cancer, the reliability of the test itself, sources of information/knowledge relevant for cervical cancer screening, and the manner in which the midwife described her role in the screening program. The transcripts of the audiotaped interviews were analyzed thematically using a team approach. The interviewed midwives showed a great deal of consensus in their descriptions of lacking familiarity with cervical cancer and its prevention and treatment. The midwives said they lack recent education and knowledge, often avoiding use of the word "cancer" with women attending screening. It seems that the midwives experienced little professional guidance in discussing cancer-related issues with women attending the screening program. In this study, they appeared to rely on personal knowledge, values, and experience instead.

Influence of sociocultural and structural factors on functional ability: the case of elderly people in Bangladesh.

OBJECTIVE: To describe and contextualize functional status of elderly people (greater or lesser than 60 years) in Bangladesh by relating it to gender, region, and socioeconomic status. METHODS: In this community-based study (N = 696), functional status was described through assessment of activities of daily living (ADL) and instrumental activities of daily living (IADL). Information was obtained on type of help used for ADLs and IADLs and reason for nonperformance of IADLs. RESULTS: Findings indicate differential performance in ADLs and IADLs by gender and region. Socioeconomic status is found to influence IADLs only. Empirical evidence regarding type of help used and reason for not performing a task enables understanding of sociocultural and structural influence on functional ability. DISCUSSION: The underlying assumption of ADL and IADL instruments that an individual will perform an activity given physical or cognitive ability is questioned. It is suggested that sociocultural and structural factors are strong determinants of task performance.

The diagnostic process and the boundaries of normality.

This article illustrates a group of cancer patients' descriptions and explanations of their experiences of health care encounters involving professional and lay processes of diagnosis related to definitions of normality. An interdisciplinary approach, representing nursing and medical anthropology, has been used in attempting to better understand data derived from semistructured interviews with 46 persons diagnosed with cancer in the greater Stockholm area and with 29 of their significant others. We argue that people in this study tend to deal with disruptive situations by attempting to construct order. In the stories presented by these cancer patients, a diagnostic process becomes evident in which patients first become "nonnormal" within a popular framework and later meet positive criteria to become "normally diseased" with the legitimization this provides. We thus see a way for the involved actors to deal with potentially difficult situations by redefining the concept of normality.

Research on risk and risk in research: theoretical and practical experiences from a multidisciplinary study on cervical cancer screening in urban Sweden.

This article describes a qualitative research project on secondary cancer prevention that was conducted using a multidisciplinary team and that was inspired by perspectives from feminist research and fourth-generation evaluation. A screening program for cervical cancer was investigated from the perspective of different stakeholders through a series of substudies using a variety of qualitative approaches, in order to have a broad basis for consideration and negotiation of improvements. The first sections of this article describe the theoretical and methodological basis for the project, which triangulates a variety of qualitative and quantitative research strategies, whereas the latter sections describe some of our experiences, positive and negative, as a research team (and thus also as stakeholders) in actually conducting the studies.

Nursing diagnosis: a critical analysis of underlying assumptions.

The nursing diagnosis movement has now reached many European countries and is rapidly being accepted as a method with which to advance the professional status of nursing as well as to define, structure, standardize and systematize nursing care. It is necessary that the import of Anglo-Saxon nursing concepts, theories and models are critically examined for cultural, contextual and philosophical appropriateness. In this article, we articulate and critically examine some of the assumptions implicit in nursing diagnosis, using examples from our clinical research in Sweden.

Nursing's knowledge base: does it have to be unique?

An International Seminar held at the University College of Health Sciences, Jonkoping, Sweden, in May 1996, was the stimulus for this article. The purpose of the seminar was to consider the contribution that nursing theory has made to the development of the profession and to identify ways in which this contribution could be enhanced. This article briefly traces the emergence of nursing theory and argues that despite its relatively short history, theory has failed fully to inform practice and is increasingly seen as irrelevant. It is suggested that two trends--the abstract and esoteric nature of much nursing theory and the desire to create a unique' body of nursing knowledge--must be countered before theory can establish its value. It is argued that these are manifestations of professional and academic insecurity which nursing must overcome before it can reach maturity.

Hospital organizational factors influence work-family conflict in registered nurses: Multilevel modeling of a nation-wide cross-sectional survey in Sweden.

BACKGROUND: The present shortage of registered nurses (RNs) in many European countries is expected to continue and worsen, which poses a substantial threat to the maintenance of healthcare in this region. Work-family conflict is a known risk factor for turnover and sickness absence. OBJECTIVE: This paper empirically examines whether the nurse practice environment is associated with experienced work-family conflict. DESIGN: A multilevel model was fit with the individual RN at the 1st, and the hospital department at the 2nd level using cross-sectional RN survey data from the Swedish part of RN4CAST, an EU 7th framework project. The data analyzed here is based on a national sample of 8356 female and 592 male RNs from 369 hospital departments. RESULTS: We found that 6% of the variability in work-family conflict experienced by RNs was at the department level. Organizational level factors significantly accounted for most of the variability at this level with two of the work practice environment factors examined, staffing adequacy and nurse involvement in hospital affairs, significantly related to work-family conflict. Due to the design of the study, factors on ward and work group levels could not be analyzed, but are likely to account for additional variance which in the present analysis appears to be on the individual level, with private life factors likely explaining another major part. CONCLUSION: These results suggest that higher level organizational factors in health care have a significant impact on the risk of work-family conflict among RNs through their impact on the nurse practice environment. Lower level organizational factors should be investigated in future studies using hierarchical multilevel sampling.

Push or pull? Relationships between lung cancer patients' perceptions of quality of care and use of complementary and alternative medicine.

UNLABELLED: Little is known about relationships between quality of care (QoC) and use of complementary and alternative medicine (CAM) among patients with lung cancer (LC). PURPOSE: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC. METHODS: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument "Quality from the patient's perspective" were analyzed. RESULTS: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care. CONCLUSIONS: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

Nutritional support and risk status among cancer patients in palliative home care services.

GOAL OF WORK: The aim of this study was to investigate the nutritional risk status and use of nutritional support among cancer patients enrolled in palliative home care services. Differences in the use of nutritional support in relation to nutritional, social and clinical factors, as well as survival were also investigated. PATIENTS AND METHODS: Structured telephone interviews were conducted with cancer patients enrolled in all 21 palliative home care services in the Stockholm region. An interview guide was designed to investigate topics related to the patient's nutritional situation. MAIN RESULTS: Interviews with 621 patients were analysed. Sixty-eight percent of the patients were scored as at nutritional risk according on a modified version of NRS-2002. Nutritional support was used by 55% of the patients, with oral nutritional supplements most common and 14% using artificial nutrition. Use of nutritional support was related to low BMI and severe weight loss and was more common in patients with shorter survival times. CONCLUSIONS: These findings demonstrate that nutritional support is used to treat already malnourished patients with shorter survival time, rather than to prevent malnutrition. A more structured approach to nutritional issues for patients in palliative phases, which considers life expectancy and psycho-social aspects of nutritional issues, could help identify potential candidates for nutritional support.

A conceptual framework for patient-professional communication: an application to the cancer context.

We present a conceptual framework of one-to-one, in-person communication that occurs between a health-care professional and a patient. The framework is intended as a tool for organizing and summarizing relevant research but it can also help guide assessing the communication process and can help guide development of interventions to improve the process. The framework includes four key components, with a focus on elements that can be modified. The first component is the focus of the interaction: each participant's communication goals. The second component consists of the participants themselves, each with five key attributes that determine, in part, how they address their goals. The third component is the communication process: each person both conveys messages and receives messages, and the messages themselves can be verbal, non-verbal, or silent. The communication process is iterative and extended in time with one act having an impact on following acts. Finally, the fourth component is the environment in which the communication occurs, both the immediate physical setting and the context beyond. Important aspects of the environment, identified as external factors, affect the communication process through their impact on the participants' attributes. The framework builds on classic communication frameworks to which it adds unique elements. Some of its unique aspects include the prominent role of the participants' goals and its distinct recognition that messages are conveyed through silence. The framework serves as a common conceptualization of factors important to successful communication for the remaining review papers in this series and for future studies of practitioner-patient communication.