Catarina Widmark

'I got a letter ...' a qualitative study of women's reasoning about attendance in a cervical cancer screening programme in urban Sweden

This explorative study aims at investigating how ‘healthy’ women describe and reason about participation in a cervical cancer screening programme in Sweden. The study is part of a multidisciplinary research project studying a population‐based cervical cancer‐screening programme from the perspective of different actors.

‘Will I be able to have a baby?’ Results from online focus group discussions with childhood cancer survivors in Sweden

STUDY QUESTION What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? SUMMARY ANSWER The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future. WHAT IS KNOWN ALREADY Many childhood cancer survivors want to have children and worry about possible infertility. STUDY DESIGN, SIZE, DURATION For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16–24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis. MAIN RESULTS AND THE ROLE OF CHANCE The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer. LIMITATIONS, REASONS FOR CAUTION Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile. WIDER IMPLICATIONS OF THE FINDINGS The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services. STUDY FUNDING/COMPETING INTEREST(S) The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.

Assessing Perceived Risk and STI Prevention Behavior: A National Population-Based Study with Special Reference to HPV

Introduction To better understand trends in sexually transmitted infection (STI) prevention, specifically low prevalence of condom use with temporary partners, the aim of this study was to examine factors associated with condom use and perceptions of STI risk amongst individuals at risk, with the underlying assumption that STI risk perceptions and STI prevention behaviors are correlated. Methods A national population-based survey on human papillomavirus (HPV) and sexual habits of young adults aged 18–30 was conducted in Sweden in 2007, with 1712 men and 8855 women participating. Regression analyses stratified by gender were performed to measure condom use with temporary partners and STI risk perception. Results Mens condom use was not associated with STI risk perception while womens was. Awareness of and disease severity perceptions were not associated with either condom use or risk perception though education level correlated with condom use. Womens young age at sexual debut was associated with a higher risk of non-condom use later in life (OR 1.95 95% CI: 1.46–2.60). Women with immigrant mothers were less likely to report seldom/never use of condoms with temporary partners compared to women with Swedish-born mothers (OR 0.53 95% CI: 0.37–0.77). Correlates to STI risk perception differ substantially between sexes. Number of reported temporary partners was the only factor associated for both men and women with condom use and STI risk perception. Conclusions Public health interventions advocating condom use with new partners could consider employing tactics besides those which primarily aim to increase knowledge or self-perceived risk if they are to be more effective in STI reduction. Gender-specific prevention strategies could be effective considering the differences found in this study.

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.

How can young women be encouraged to attend cervical cancer screening? : Suggestions from face-to-face and internet focus group discussions with 30 year-old women in Stockholm, Sweden

Abstract Background. Cervical cancer screening (CCS) using Pap-smears has been carried out for decades and is still an essential tool for secondary cancer prevention. Focus has traditionally been on what hinders womens attendance, instead of researching this issue from a positive standpoint, i.e. what factors encourage women to take a Pap-smear? In this article, we therefore explore issues that 30-year-old women have addressed as encouraging CCS attendance, with particular focus on aspects susceptible to intervention. Material and methods. Through the population-based cervical cancer screening (PCCSP) registry in Stockholm, Sweden, a stratified random sampling technique was used to recruit women from the same birth cohort with varied CCS histories and results. Nine face-to-face focus groups discussions (FGDs) and 30 internet-based FGDs were conducted with a total of 138 women aged 30. Qualitative analysis was inspired by interpretative description, to generate clinically relevant and useful data. Results. In general, these women expressed positive views about the PCCSP as an existing service, regardless of screening history. They described a wide range of factors encompassing the entire screening trajectory from invitation through follow-up which could motivate young women to CCS participation, including social marketing. Many of the suggestions related to individualization of the PCCSP, as well as a need to understand the relationship between human papilloma virus (HPV) and cervical cancer. Discusssion. These results are discussed in terms of the inherent tension between population-based public health initiatives and individually-oriented health care provision. Many suggestions given are already incorporated into the existing Stockholm-Gotland screening program, although this information may not reach women who need it. New research should test whether systematic information on HPV may provide a missing link in motivating young women to attend CCS, and which of their suggestions can serve to increase CCS participation.

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 role of nursing in cervical cancer prevention and treatment

Nurses today assume multiple roles, such as patient advocate, care provider, and research investigator. At the Second International Conference on Cervical Cancer (April 11–14, 2002, Houston, TX), nurses presented original research describing these roles in the context of cervical cancer screening, prevention, and detection in the United States and Sweden; outlined the uses of practice guidelines; and suggested future directions for nursing research. In the 20th century, nurses expanded their patient care responsibilities and promoted cancer control by expanding their skills. Some sought to broaden the spectrum of care by investigating cervical cancer screening disparities, behavioral aspects of screening, and differences between the stated purposes of screening programs and those of the nurse‐midwives operating them. In the 21st century, nurses interested in cervical cancer control expect to broaden the scope of their care and their research roles further by continuing to improve training, advocating screening (and increased education about screening), and helping to establish new sources of funding for research. Cancer 2003;98(9 Suppl):2070–2074.

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.

Cancer screening in the context of women?s health: Perceptions of body and self among women of different ages in urban Sweden.

Most research on cervical cancer screening from the perspective of the involved women tends to focus on issues specifically related to screening participation, knowledge and information needs or experiences. Our previous research in this area indicated a need to investigate womens perspectives on cancer screening within a broader framework. Therefore, in this study, we aim to understand better, how women reason about health, ill health, health maintenance and disease prevention, in relation to cancer prevention and screening. We conducted twelve focus group discussions in Sweden with 49 women between the ages of 21 and 74 years. The findings indicate that womens reasoning about different aspects of “control”—physical, physiological, emotional and social—was central in understanding their view on cancer prevention and screening. The desire for and burden of maintaining control appeared to affect their decisions and attitudes toward cervical cancer screening, with health maintenance described as having a “high price”. Whereas some women motivated their screening attendance as a means of maintaining control, others described abstaining from screening which appeared to threaten their sense of control. It was also found that women reason differently about mammography and cervical cancer screening, which is contrary to assumptions guiding research in this area.

Between youth and adulthood: focus group discussions with 30-year-old women about cervical cancer and its prevention in urban Sweden.

Background: Although there is a significant amount of research on cervical cancer screening (CCS), few studies address screening experiences of women related to reasoning about health maintenance and disease prevention in general. Research tends to neglect experiences in different phases of life and experiences of women with different screening histories. Recent literature primarily focuses on adolescents targeted for human papilloma virus vaccinations, whereas perspectives of women who need continued CCS are lacking. Objective: The aim of the study was to explore how 30-year-old women reason about health, ill health, health maintenance, and disease prevention, in relation to cervical cancer, its prevention, and screening. Methods: Through a population-based CCS registry, we randomly sampled women to attend focus group discussions stratified by previous patterns in screening history and test results. Data from 38 attendees were inductively analyzed. Results: Womens discussions encompassed temporal aspects of the past and the future, with youth in the rearview mirror and the demands of adulthood ahead. Matters related to sickness, including cancer and its prevention, were described as distant and not prioritized in this phase of life. This situation was compounded by lack of relevant information about cervical cancer and screening. Conclusions: The manner 30-year-old women self-defined themselves in the transition between youth and adulthood appears to strongly influence their reasoning about CCS and other forms of health maintenance and disease prevention. Implications for Practice: Cervical cancer screening programs are challenged to adapt both information and organizations to new cohorts of women with different needs and life situations.