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Cervical cancer screening is a preventive intervention directed towards women to both detect cervical cancer and identify those at risk for developing this disease. It has been argued that participation in screening programmes and early detection situations may lead to new kinds of sickness experiences. This article is based on qualitative phenomenological hermeneutical analysis of interviews with women who have received abnormal Pap smear test results through a population-based outreach screening programme in urban Sweden. The aim of this article is to illuminate the meaning, for the participating women, of the lived experience of receiving notification about an abnormal Pap smear result. The data are presented in terms of two themes: Pap smear for routine and recurrent confirmation of health and unexpected and ambiguous communication about Pap smear results. The findings are discussed as an unintentional transition from confirmation of health to liminality. Whereas medical diagnosis has been discussed as structuring the inchoate, an abnormal Pap smear did not create order for the interviewed women. On the contrary, the notification of an abnormal Pap smear created disorder as the women had expected to be confirmed as healthy but instead neither health nor disease were confirmed or excluded. Even 'simple' technology is shown to have an ontological dimension, with the ability to transform daily taken-for-grantedness of ourselves as primarily healthy to (potentially) unhealthy.

Background & aim : Little is known about the perspectives that patients with advanced cancer and their family members have concerning nutritional problems and nutritional support. The aim of this study was to investigate their experiences of the nutritional situation prior to introduction of home parenteral nutrition (HPN) in order to understand factors contributing to the decision to accept HPN. Methods : Semi-structured interviews were conducted with 13 patients with advanced cancer who had received HPN and 11 family members. The constant comparative method was used for data analysis. Results : Patients and family members described the nutritional situation prior to HPN as a source of worry and often desperation. Patients reported wanting and trying to eat, but being unable to do so. Family members experienced powerlessness and frustration, as they could not enable the patient to eat. A lack of attention to nutritional problems by the hospital staff was described. The offer of HPN came when patients and family no longer felt able to solve the nutritional problems within the family. Conclusion : The desperate and chaotic nutritional situation in the family led to willingness to accept HPN. Because of the severity of the problems, HPN was viewed as a positive alternative.

The study aims to (i) describe regional variation and gender differences in health status of older people (60 years and older) in Bangladesh, indicated by self-reported health problems and functional ability; (ii) explore influence of socio-economic factors on health status of older people. In a cross-sectional study in rural and urban Bangladesh, 696 older persons were asked about their health problems and ability to manage activities of daily living (ADL). More than 95% of older people reported health problems. Approximately 80% of elderly women in both the regions reported having four or more health problems compared with 42% and 63% elderly men in the urban and rural regions, respectively. More women (urban: 55%; rural: 36%) than men (urban: 32%; rural: 22%) also reported difficulties with ADL. Irrespective of age, sex and area of residence, those reporting greater number of health problems were more likely to report difficulty with at least one ADL task. Reporting pattern of specific health problems varied between urban and rural regions. Socio-economic indicators were found to have little influence on reporting of health problems, particularly in the rural region. Observed regional difference may be related to the influence of social and environmental factors, and level of awareness concerning certain health conditions.

In Stockholm, population-based cervical cancer screening is offered free of charge to all women between 23 and 60 years of age. A survey to assess satisfaction with care using a previously validated questionnaire was conducted with 73 women receiving abnormal Pap smear results through the screening program. Thirty-seven women received results of screening within a feasibility project, in which they had extra contact with a midwife prior to receiving standard information and medical follow-up by a gynaecologist. The other 36 women were a matched sample receiving standard information. The results indicate generally high perceptions of quality of care, with particularly high ratings of perceived gynaecological knowledge and medical information provision. Low perceptions of quality were found regarding several aspects of psychosocial care. Higher levels of self-reported psychological well-being were found among the women who had extra midwifery contact. The results indicate that more attention to psychosocial aspects might optimize the screening program.

Objective:To describe and contextualize functional status of elderly people (= 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.

Difficulties in communicating diagnostic information are exacerbated when the 'diagnosis' is a 'genetic risk' for cancer. The risk estimation demanded in this situation differs from other types of probability estimations. Observations of participants in 45 consultation sessions between physicians and potential patients were conducted at a clinic for hereditary cancer to explore the communication of genetic information. Thirty-three sessions were audiotaped, transcribed verbatim and analyzed, along with notes from the other sessions. A dominant theme was found to be numerical discussion of risk. Further analysis resulted in the description of problems for practitioners in the process of translating scientific knowledge into clinical management. Problems in providing information include unclear aims of the consultation sessions, mixing various types of background information and probabilities, recognizing how low the predictive values are, and difficulties in communicating the relationship between probability and conclusions. Problems in communicating information about the genetic risk for cancer are of at least two types: dilemmas arising from uncertainties implicit in the nature of the information itself and difficulties in communicating information in a manner that those concerned can interpret. These issues need clarification, so that information with far-reaching consequences can be made as clear and comprehensible as possible for those involved.

Editorial comment on "How do interventions design to improve provider-patient communication work? Illustrative applications of a framework for communication" and "The State of the Science: Informing choices across the cancer journey with public health mechanisms and decision processes"

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.

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.

Although nursing literature on 'caring' has proliferated in recent years, relatively little empirical data exists about which aspects of nursing practice are those recognized and valued by patients. The purpose of the qualitative study presented here is to explore the manner in which one group of Swedish patients describe and explain the domain of nursing. The data presented derives from interviews with persons diagnosed with cancer during 1987 at one general hospital in the greater Stockholm area. Forty-six patients were interviewed in 1988-89, and 20 of these survivors were interviewed again in 1992. The domain of nursing practice 'expected' by the patients was seen to be defined positively, both by what nurses 'are' and 'do', as well as negatively, by what they do not do. It was found that the patient--nurse contact, as described by these patients, was between an individual patient and a nursing collective. Finally, the need for local rather than global criteria for evaluating nursing care is discussed.

Background The negative effects of stigma on persons living with HIV (PLHIV) have been documented in many settings and it is thought that stigma against PLHIV leads to more difficulties for those who need to access HIV testing, treatment and care, as well as to limited community uptake of HIV prevention and testing messages. In order to understand and prevent stigma towards PLHIV, it is important to be able to measure stigma within communities and to understand which factors are associated with higher stigma. Methods To analyze patterns of community stigma and determinants to stigma toward PLHIV, we performed an exploratory population-based survey with 1874 randomly sampled adults within a demographic surveillance site (DSS) in rural Vietnam. Participants were interviewed regarding knowledge of HIV and attitudes towards persons living with HIV. Data were linked to socioeconomic and migration data from the DSS and latent class analysis and multinomial logistic regression were conducted to examine stigma group sub-types and factors associated with stigma group membership. Results We found unexpectedly high and complex patterns of stigma against PLHIV in this rural setting. Women had the greatest odds of belong to the highest stigma group (OR 1.84, 95% CI 1.42-2.37), while those with more education had lower odds of highest stigma group membership (OR 0.45, 95% CI 0.32-0.62 for secondary education; OR 0.19, 95% CI 0.10-0.35 for tertiary education). Long-term migration out of the district (OR 0.61, 95% CI 0.4-0.91), feeling at-risk for HIV (OR 0.42, 95% CI 0.27-0.66), having heard of HIV from more sources (OR 0.44, 95% CI 0.3-0.66), and knowing someone with HIV (OR 0.76, 95% CI 0.58-0.99) were all associated with lower odds of highest stigma group membership. Nearly 20% of the population was highly unsure of their attitudes towards PLHIV and persons in this group had significantly lower odds of feeling at-risk for HIV (OR 0.54, 95% CI 0.33-0.90) or of knowing someone with HIV (OR 0.32, 95% CI 0.22-0.46). Conclusions Stigma towards PLHIV is high generally, and very high in some sub-groups, in this community setting. Future stigma prevention efforts could be enhanced by analyzing community stigma sub-groups and tailoring intervention messages to community patterns of stigma.

Objective Uncontrolled proliferation of health technologies (HT) is one contributor to the increasing pressure on health systems to adopt new technologies. With limited resources, policy-makers encounter difficulties in fulfilling their responsibility to meet the healthcare needs of the population. The aim of this study is to explore how policy-makers' reason about the diffusion and utilization of health technologies in Iran using magnetic resonance imaging (MRI) and interferon beta as tracers. Method This qualitative exploration complements quantitative data generated in a research project investigating the diffusion and utilization of MRI and interferon beta in Iran. Qualitative semi-structured interviews were conducted with 13 informants in different positions and levels of authority in the Ministry of Health (MOH), University of Medical Sciences, Health Insurance Organizations, and Parliament. The data was analysed using the framework approach. Findings Although policy-makers appeared to be positive to health technology assessment (HTA), the processes of policy-making described by the interviewees did not seem to be based on a full understanding of this (discipline). Several obstacles to applying knowledge about HT and HTA were described. The current official plan for MRI adoption and diffusion in the country was said not to be followed, and no such plan was described for interferon beta. Instead, market forces such as advertising, and physician and consumer demand, appear to have strong influence on HT diffusion and use. Dual practice may have increased the induced demand and also reduced the supervision of the private sector by the MOH. Conclusion Management instability and lack of coordination in the MOH were found to be important obstacles to accumulation of knowledge and experience which, in turn, could have led to suboptimal managerial and policy-making processes. Furthermore marketing should be controlled in order to avoid creating unnecessary patient demands and negative influences on physicians' behavior.

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.

Smoking is a major risk factor for head and neck cancer. Smoking during diagnosis and treatment increases risks for disease recurrence, treatment failure, and increased side effects. Despite recommendations, many patients fail to stop smoking. A theory-based nurse-led intervention program was develo

What is needed to improve quality of care for patients with advanced cancer? Results of focus group discussions with staff.

Background Quality and safety in health care has been increasingly in focus during the past 10–15 years. Stakeholders actively discuss ways to measure safety and quality of care to improve the health care system as a whole. Defining and measuring quality and safety, however, is complicated. One underutilized resource worthy of further exploration is the use of registered nurses (RNs) as informants of overall quality of care and patient safety. However, research is still scarce or lacking regarding RN assessments of patient safety and quality of care and their relationship to objective patient outcomes. Objective To investigate relationships between RN assessed quality of care and patient safety and 30-day inpatient mortality post-surgery in acute-care hospitals. Design This is a national cross-sectional study. Data sources A survey ( n =>10,000 RNs); hospital organizational data ( n =67); hospital discharge registry data ( n >200,000 surgical patients). Data collection and analysis RN data derives from a national sample of RNs working directly with inpatient care in surgical/medical wards in acute-care hospitals in Sweden in 2010. Patient data are from the same hospitals in 2009–2010. Adjusted multivariate logistic regression models were used to estimate relationships between RN assessments and 30-day inpatient mortality. Results Patients cared for in hospitals where a high proportion of RNs reported excellent quality of care (the highest third of hospitals) had 23% lower odds of 30-day inpatient mortality compared to patients cared for in hospitals in the lowest third (OR 0.77, CI 0.65–0.91). Similarly, patients in hospitals where a high proportion of RNs reported excellent patient safety (highest third) had is 26% lower odds of death (OR 0.74, CI 0.60–0.91). Conclusions RN assessed excellent patient safety and quality of care are related to significant reductions in odds of 30-day inpatient mortality, suggesting that positive RN reports of quality and safety can be valid indicators of these key variables.

This article presents a critical discussion of Antonovsky's salutogenic model, focusing on its instrumentalisation in the Sense of Coherence questionnaire and implications for health care research. The critical discussion is related to three themes: a. The divorce between theory and method, b. The Sense of Coherence questionnaire: a "supra-cultural instrument"? and c. Numbers, normality and the social construction of reality. The author concludes that extreme cautiousness and further study is necessary before the Sense of Coherence questionnaire should be considered adequate for use in applied clinical research.

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.

This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to six open questions.We found that nurses described positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use. Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.

This paper explores lay explanations of developing a cancer disease and 'recovering' from the disease, both phenomena of importance in understanding how information on cancer prevention and recovery is made sense of by non-professionals. The data derive from interviews conducted with persons diagnosed with a malignant disease during 1987 at one hospital in urban Sweden. Forty-six patients were interviewed in 1988-1989, and 20 of those surviving were interviewed again in 1992. Explanations most often appear to be negotiated forth because they are able to fulfil a positive function for the patient in the sickness process. Intricate combinations of explanations were found which avoid individual blame, provide the possibility of positive influence and allow for individual successes. These micro-level explanations are discussed in relation to general discourse about prevention of sickness in our culture.

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.

In Sweden, nurse-midwives in primary health care are responsible for taking Papanicolaou smears in population-based cervical cancer screening programs. This article discusses the manner in which a group of nurse-midwives, working with the cervical cancer screening program, view both opportunities and burdens inherent in their work. Semistructured interviews were conducted with 21 nurse-midwives engaged in screening at seven antenatal health care centers in demographically different parts of Stockholm, using a team approach to collect and inductively analyze the interviews. Results indicate discrepancies between ideals guiding the midwives and their practice. Positive aspects described by the midwives appear to be related to an ideology of care, whereas perceived burdens include the midwives' sense of powerlessness, lack of congruence between midwives' ideology and screening organization, and lack of professional familiarity with cancer. Several of these features can be related to issues that are challenges for many health care practitioners today, even in other settings. Our conclusion is that the screening program has latent potential for further development of the role of the nurse-midwife as an advocate for women throughout the lifespan and in a variety of situations.

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.

(1999). Innovations and Dilemmas in Psychosocial Oncology: Contributions from the 10th Conference of the European Society for Psychosocial Oncology. Acta Oncologica: Vol. 38, No. 6, pp. 685-687.