Marit Solbjør

Challenges of informed choice in organised screening

Context: Despite much research on informed choice and the individuals’ autonomy in organised medical screening, little is known about the individuals’ decision-making process as expressed in their own words. Objectives: To explore the decision-making process among women invited to a mammography screening programme. Setting: Women living in the counties of Sør- and Nord-Trøndelag, Norway, invited to the first round of the Norwegian Breast Cancer Screening Program (NBCSP) in 2003. Methods: Qualitative methods based on eight semistructured focus-group interviews with a total of 69 women aged 50–69 years. Results: The decision to attend mammography screening was not based on the information in the invitation letter and leaflet provided by the NBCSP. They perceived the invitation letter with a prescheduled appointment as if a decision for mammography had already been made. This was experienced as an aid in overcoming the postponements that easily occur in daily lives. The invitation to mammography screening was embraced as an indication of a responsible welfare state, “like a mother taking care.” Conclusion: In a welfare state where governmental institutions are trusted, mass screening for disease is acknowledged by screening participants as a valued expression of paternalism. Trust, gratitude, and convenience were more important factors than information about benefits, harms, and risks when the women made their decisions to attend screening. These elements should be included in the ethical debates on informed choice in preventive medicine.

Same description, different values. How service users and providers define patient and public involvement in health care.

Background  Patient and public involvement in health care is important, but the existing definitions of the concept do not integrate the stakeholders’ own perceptions.

Patient participation in mental healthcare: When is it difficult? A qualitative study of users and providers in a mental health hospital in Norway

Background: In western countries, patient participation is requested in policies on mental health services. Participation is built on ideas of democracy and individual responsibility. Mental illness has, however, been characterized by its irrational features. Aim: To investigate mental health service users’ and providers’ views on patient participation during episodes of mental illness. Methods: Qualitative interview study with 20 users and 25 staff from a mental health hospital in central Norway. Results: Both users and professionals saw poor illness phases as an obstacle to patient participation. Lack of insight, lack of verbal ability and difficulty cooperating made participation difficult. During such phases, patient participation was redefined. There was a shift in responsibility where professionals took charge through strategies of providing information, motivating patients and reducing choices. Respect and dignity were maintained and not redefined. Conclusions: In poor phases of mental illness, patient participation was redefined and weighed against what was perceived to be the patient’s best interest.

User involvement in hospital wards: professionals negotiating user knowledge. A qualitative study.

OBJECTIVE To investigate how health professionals in hospital wards that have voluntarily initiated user involvement negotiate user knowledge into their professional knowledge. METHODS Qualitative interviews were conducted with 18 health professionals from 12 hospital wards in Central Norway. RESULTS The main value to health professionals of initiating user involvement was gaining access to user knowledge. Two functions of user knowledge were identified--user knowledge as an alternative to professional knowledge and user knowledge as support for professional knowledge. The need for good professional practice was used as an argument for closing professional fields to user involvement. Professionals were also under scrutiny from other discourses, such as scientific-bureaucratic medicine, which had a strong impact on how user involvement was carried out. CONCLUSION Health professionals saw knowledge transfer as valuable, but ultimately valued professional knowledge above user knowledge. PRACTICE IMPLICATIONS Even health personnel who embrace user involvement limit the influence of user knowledge on their own professional work. It seems necessary that user involvement be included in health policy and practice guidelines at hospital wards, if it is desirable that user knowledge influence professional knowledge and everyday work.

Experiences of Recall After Mammography Screening—A Qualitative Study

Women participating in biannual mammography screening for 20 years have a cumulative risk of 20% of being recalled. We conducted a prospective qualitative interview study with eight nonsymptomatic women recalled after mammography screening. These women expressed mixed emotions over being recalled. Information about recall rates and breast cancer risk was seen as alarming, and cancer risk estimates were seen by some as high. The short time between recall and examination was reassuring, but it was also perceived as an indication of malignancy. Despite distress from examinations, most of the women continued to want medical examinations to detect cancer early.

Experiences from the implementation of a comprehensive development plan for user involvement in a mental health hospital: A qualitative case study

Background: Few studies have investigated user involvement initiatives in whole organizations. The aim was to explore the experiences of professionals and user representatives taking part in the implementation of a user involvement plan. Materials: A qualitative study in a mental health hospital included interviews and observational data. Discussion: Three different stories emerged. The first described the implementation as a success. The second described the implementation as a success, but after overcoming several obstacles. The third described that the development plan had limited impact. Conclusions: Close attention should be made to decision-making and resource allocation when implementing user involvement.

Mammography screening and trust: The case of interval breast cancer

Interval cancer is cancer detected between screening rounds among screening participants. In the Norwegian Breast Cancer Screening Programme, 19 per 10,000 screened women are diagnosed with interval cancer. We conducted semi-structured interviews with 26 such women. The women interpreted their interval breast cancer in two ways: that mammography can never be completely certain, or as an experience characterized by shock and doubts about the technology and the conduct of the medical experts. Being diagnosed with interval cancer thus influenced their trust in mammography, but not necessarily to the point of creating distrust. The women saw themselves as exceptions in an otherwise beneficial screening programme. Convinced that statistics had shown benefits from mammography screening and knowing others whose malignant tumours had been detected in the programme, the women bracketed their own experiences and continued trusting mammography screening. Facing a potentially lethal disease and a lack of alternatives to mammography screening left the women with few options but to trust the programme in order to maintain hope. In other words, trust may not only be a basis for hope, but also a consequence of it.

Could screening participation bias symptom interpretation? An interview study on women's interpretations of and responses to cancer symptoms between mammography screening rounds

Objectives To explore how women with negative mammography screening results, but who were later diagnosed with interval breast cancer, reacted when they observed breast symptoms that could indicate malignancy in-between screening rounds. Design Semistructured individual interviews with women who have been diagnosed with breast cancer during mammography screening intervals. Setting Two breast diagnostic units covering two counties in Norway. Participants 26 women diagnosed with interval breast cancer. Results Women with a screening negative result react in two ways when experiencing a possible symptom of breast cancer. Among 24 women with a self-detected palpable lesion, 14 sought medical advice immediately. Their argument was to dispose of potential cancer as soon as possible. Ten women delayed seeking medical advice, explaining their delay as a result of practical difficulties such as holidays, uncertainty about the symptom, and previous experiences of healthcare services’ ability to handle diffuse symptoms. Also, a recent negative mammography scan led some women to assume that the palpable lesion was benign and wait for the next screening round. Conclusions Participating in mammography screening may contribute to a postponed reaction to breast cancer symptoms, although most women acted rapidly when detecting a palpable breast lesion. Furthermore, screening participation does not necessarily increase awareness of breast cancer symptoms.

Women's Experiences With Mammography Screening Through 6 Years of Participation—A Longitudinal Qualitative Study

In this article we explore womens experiences with 6 years of mammography screening. Regular and repeated mammography screening is promoted as an important tool for disease prevention among women worldwide. The purpose of the present study was to explore how continued participation in screening influences how women perceive screening and breast cancer. We carried out focus groups with 24 screening participants in 2003 and 2009. Our analysis highlights that while women were excited about the examination in 2003, it was perceived as routine in 2009. Waiting for the results became easier over the years, while stress related to receiving the results letter did not diminish. Knowledge of risk factors for breast cancer did not change. Personal risk assessment remained low, though high incidence of cancer among acquaintances suggested high risk for breast cancer among women in general. Analysis of participant experiences suggests that continuous participation in screening has led surveillance medicine to become a part of ordinary life.

Exploring lifestyle and risk in preventing type 2 diabetes-a nested qualitative study of older participants in a lifestyle intervention program (VEND-RISK)

BackgroundLifestyle intervention may reduce the development of type 2 diabetes among high-risk individuals. The aim of this study was to explore how older adults perceived their own lifestyle and being at increased risk for type 2 diabetes while they participated in a lifestyle intervention programme.MethodsA nested qualitative study was performed with 26 participants (mean age 68 years) in the VEND-RISK Study. Participants had previously participated in the HUNT3 Study and the HUNT DE-PLAN Study, where their risk for developing type 2 diabetes (FIND-RISC ≥ 15) had been identified. The data were analysed using systematic text condensation.ResultsTwo main themes were identified. The first theme was having resources available for an active lifestyle, which included having a family and being part of a social network, having a positive attitude toward life, and maintaining established habits from childhood to the present. The second theme was being at increased risk for type 2 diabetes, which included varied reactions to the information on increased risk, how lifestyle intervention raised awareness about risk behaviour, and health-related worries and ambitions as type 2 diabetes prevention.ConclusionsAssessing a participant’s resources could improve the outcomes of lifestyle intervention programmes. Both family history and risk perception could be used in preventive strategies to enhance changes in lifestyle.Trial registrationThe VEND-RISK Study was registered in ClinicalTrials.gov on April 26, 2010, with the registration number NCT01135901.