Exploring childhood cancer survivors' views about sex and sexual experiences -findings from online focus group discussions

PURPOSE: To explore childhood cancer survivors' views about sex and sexual experiences and, as an additional aim, their possible needs for care and support from health care professionals regarding sexual life. METHODS: Written online focus group discussions were performed with survivors of childhood cancer, identified through the Swedish Childhood Cancer Registry; 133 (36%; aged 16-25) participated. Written text was analysed using qualitative content analysis. RESULTS: The analysis resulted in one main category: Could my cancer experience have an impact on my sexual life? with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Concerns related to the physical body. In general, participants had not reflected on the possibility that their cancer experience could impact on sexual life. Sex was often considered to be something natural, important and taken for granted. However, thoughts and worries were expressed including being shy, feeling insecure and falling behind peers. Physical concerns included vaginal dryness and difficulties related to erection and reaching orgasm. Many participants stated that sexual issues had not been discussed with health care professionals, however, the need for such support differed. CONCLUSIONS: Many of the childhood cancer survivors' did not relate their sexual experiences to previous cancer treatment. However, problems were expressed, both of emotional and physical nature. Many participants stated that they had not received any information or support regarding sexual issues from health care professionals, why it is recommended to be regularly addressed in follow-up care

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

Aim: This thesis aims to provide a multidimensional assessment of infection risks and to evaluate strategies for HPV prevention including vaccination with quadrivalent HPVvaccines, dose-level vaccine effectiveness and condom use in high STI risk situations. Methods: Multiple population-based registers and questionnaire responses provided data for this thesis. Various multivariable and univariate regression models were fit. Findings: Overall, quadrivalent HPV-vaccination was highly effective against genital warts (GW) also referred to as condyloma, which is the first HPV disease endpoint possible to measure. However, effectiveness was contingent upon young age-at-first vaccination, with effectiveness declining steadily the older the age-at-first vaccination. Among women above 20 years of age there was low to immeasurable effectiveness and suggestive evidence vaccinations in this age group tended to reach women at high GW risk. There were marked socioeconomic disparities in the opportunistic (on-demand with co-pay) vaccination strategy evaluated, with women and girls who have parents with the highest education level compared to the lowest having a 15 times greater likelihood to be vaccinated (Study III). Once vaccination was initiated, however, high parental education level was unrelated to vaccination completion. Maximum protection against GW was found among girls vaccinated under the age of 17 who had received three doses of the vaccine. No differences in effectiveness were found for girls who received twodoses between ages 10-16 with that of those who received three-doses between ages 17- 19 (Study IV). GW affects more men than women in Sweden as of 2010 with 453 per 100 000 men and 365 per 100 000 women treated. A decline between 25-30% was seen between 2006 and 2010 among women in the age groups with the highest vaccination coverage. No decline was found amongst men and their GW incidence has steadily increased between 2006 and 2010 (Study II). Reported condom use in high risk situations was low among both men and women, with 41% of men and 34% of women reporting always/almost always condom use with temporary partners. STI risk perception was also low, with approximately 10% of sexually active respondents considering themselves at large risk of contracting an STI. There was no association between men’s condom use and their STI risk perception but there was an association for women (Study I). Conclusions: Results suggest that males bear a substantial burden of HPV-related condyloma where incidence has dropped among women. When planning HPVvaccination among females, efforts should target girls under age 14 for maximum effectiveness. Quadrivalent HPV-vaccination offers most protection against condyloma at three doses. Gross social inequity was found with opportunistic HPV-vaccination. There were large gender differences in factors associated with condom use in high risk situations and STI risk perceptions

Kvinnohälsa i perspektiv : Studier med barnmorskor och läkare samt med kvinnor som vårdbrukare Exempel från cervixcancerscreening och obstetrisk vård av omskurna kvinnor

In this thesis two areas of women's health are examined from different stakeholder perspectives. The areas are cervical cancer screening (CCS; articles I, III, V) and obstetrical care of circumcised/infibulated women (articles II, IV). The perspectives are those of midwives (articles I, II), gynaecologistslobstetricians (articles III, IV) and lay women (article V). The overall aim of the thesis is to investigate how different stakeholders describe and reason about these areas of women's health. Study I: Midwives in antenatal clinics (ANCs) perform Pap smears in women attending the populationbased CCS program. The aim of study I was to investigate midwives' experiences of working with CCS. Semi-structured interviews were conducted with 21 midwives at seven ANCs. Results indicate discrepancies between ideals guiding the midwives and their practice in CCS. Positive aspects related to an ideology of care, whereas perceived negative aspects include a lack of congruence between midwives' ideology and the screening organisation, and a lack of professional familiarity with cancer and secondary cancer prevention. In Study II, we aimed to investigate midwives' experiences of caring for circumcised women as well as perceptions and attitudes regarding female circumcision. Individual interviews and focus group discussions (FGDs) were conducted with 26 midwives in three labour wards and two ANCs. The findings are described in relation to the strong and contradictory emotions entailed in the care of circumcised women, midwives' reliance on the Swedish law when dealing with dilemmas in interactions with the women and their families, and the specific knowledge and skills needed when caring for circumcised women, which were often described as lacking. Study III: The dynamics between individual health and health on a population level was examined in study III. The aim was to investigate how gynaecologists who practised in both public and private settings reasoned about CCS. Semistructured interviews were held with 17 gynaecologists. Results indicate ambiguity in the gynaecologists' descriptions of the purpose of both population-based CCS and smear testing in general. There were also differences in how they discussed women in regard to Pap smears, dependant on if they were seen as 'my patients' (in both public and private practices) or part of 'the population' (i.e. women unknown to the gynaecologist), with moral distinctions found in language usage related to attend an ce/no n-atte nd ance in screening. Study IV: To complement the midwives' views on and experiences of caring for circumcised women in study II, study V was conducted to explore doctors' views and experiences of caring for circumcised women. Nineteen interviews with junior and senior physicians working in both ANC and hospital obstetric departments were analysed inductively. The findings indicate little consensus among the interviewed doctors on what constitutes good obstetrical care for circumcised women or how care should be provided, Major problems included inconsistent praxis & policy use, uncoordinated care trajectories, diffuse professional role responsibilities, difficulty monitoring labour & foetal status and inhibited communication due to language barriers, cultural differences and time constraints. Study V: The aim of study V was to contextualise how women reason about health, ill health, health maintenance and disease prevention, to better understand their perspectives on cancer and cancer screening. Twelve FGDs were held with 48 women between 21-75 years. Results indicate that women's reasoning can be related to their ambivalent relationship to different aspects of control, noted in part by the 'high price' they ascribe to health maintenance. Whereas some women motivate their screening attendance as a means of maintaining control, others seem to abstain from screening which appears to threaten their sense of control. Women reasoned differently about mammography and CCS, contrary to assumptions guiding research in this area. Discussion: Despite situation-specific differences between CCS and obstetrical care of circumcised women, a number of similiarities were found in these qualitative studies in the manner professionals, both midwives and doctors, reasoned about their experiences. Two notable commonalities were a relatively passive approach to obtaining new knowledge, although limits in existing knowledge were voiced, and the conceptualisation of the normal and the pathological as salient in professional role delineation. Women described health maintenance as complex, with information from professionals not matching their needs. In relation to screening, this may be related to the tension between population health and individual needs, also described by professionals

'Information on the fly': Challenges in professional communication in high technological nursing. A focus group study from a radiotherapy department in Sweden

BACKGROUND: Radiotherapy (RT) units are high-tech nursing environments. In Sweden, RT registered nurses (RNs) provide and manage RT in close collaboration with other professional groups, as well as providing nursing care for patients with cancer. Communication demands on these RNs are thus particularly complex. In this study, we aimed to better understand problems, strengths and change needs related to professional communication with and within the RT department, as a basis for developing a situation-specific intervention. METHODS: Focus groups discussions (FGDs) were conducted with different professional (RNs, assistant nurses, physicians, engineers and physicists) and user stakeholders. Transcripts of the FGDs were inductively analyzed by a team of researchers, to generate clinically relevant and useful data. RESULTS: These findings give insight into RT safety climate and are presented under three major headings: Conceptualization of professional domains; Organization and leadership issues; and Communication forms, strategies and processes. The impact of existing hierarchies, including how they are conceptualized and acted out in practice, was noted throughout these data. Despite other differences, participating professionals agreed about communication problems related to RT, i.e. a lack of systems and processes for information transfer, unclear role differentiation, a sense of mutual disrespect, and ad hoc communication taking place ‘on the fly’. While all professional groups recognized extensive communication problems, none acknowledged the potential negative effects on patient safety or care described in the FGD with patient representatives. While RNs often initially denied the existence of a hierarchy, they placed themselves on a hierarchy in their descriptions, describing their own role as passive, with a sense of powerlessness. Potential safety hazards described in the FGDs include not reporting medical errors and silently ignoring or actively opposing new guidelines and regulations. CONCLUSIONS: There is a risk that RNs who view themselves as disenfranchised within an organization will act with passive resistance to change, rather than as change promoters. As interventions to strengthen teams cannot be stronger than the weakest link, RNs may need support in the transition “from silence to voice” in order to take a position of full professional responsibility in a multi-professional health care team

‘Information on the fly’: Challenges in professional communication in high technological nursing. A focus group study from a radiotherapy department in Sweden

Abstract Background Radiotherapy (RT) units are high-tech nursing environments. In Sweden, RT registered nurses (RNs) provide and manage RT in close collaboration with other professional groups, as well as providing nursing care for patients with cancer. Communication demands on these RNs are thus particularly complex. In this study, we aimed to better understand problems, strengths and change needs related to professional communication with and within the RT department, as a basis for developing a situation-specific intervention. Methods Focus groups discussions (FGDs) were conducted with different professional (RNs, assistant nurses, physicians, engineers and physicists) and user stakeholders. Transcripts of the FGDs were inductively analyzed by a team of researchers, to generate clinically relevant and useful data. Results These findings give insight into RT safety climate and are presented under three major headings: Conceptualization of professional domains; Organization and leadership issues; and Communication forms, strategies and processes. The impact of existing hierarchies, including how they are conceptualized and acted out in practice, was noted throughout these data. Despite other differences, participating professionals agreed about communication problems related to RT, i.e. a lack of systems and processes for information transfer, unclear role differentiation, a sense of mutual disrespect, and ad hoc communication taking place ‘on the fly’. While all professional groups recognized extensive communication problems, none acknowledged the potential negative effects on patient safety or care described in the FGD with patient representatives. While RNs often initially denied the existence of a hierarchy, they placed themselves on a hierarchy in their descriptions, describing their own role as passive, with a sense of powerlessness. Potential safety hazards described in the FGDs include not reporting medical errors and silently ignoring or actively opposing new guidelines and regulations. Conclusions There is a risk that RNs who view themselves as disenfranchised within an organization will act with passive resistance to change, rather than as change promoters. As interventions to strengthen teams cannot be stronger than the weakest link, RNs may need support in the transition “from silence to voice” in order to take a position of full professional responsibility in a multi-professional health care team.</p

The 'hows', 'whos', and 'whens' of screening: gynaecologists' perspectives on cervical cancer screening in urban Sweden

Population-based screening has contributed to decreased mortality in cervical cancer. However, the 'hows', 'whos' and 'whens' of screening still concern health professionals and policy makers. As part of a research project aimed at examining a population-based cervical cancer screening program (PCCSP) from different stakeholders' perspectives, the aim of this qualitative interview study was to elucidate the views of gynaecologists, working in both public and private settings, as stakeholders in the PCCSP in the county of Stockholm, Sweden. Results from semi structured interviews with 17 physicians indicate ambiguity in their descriptions of the purpose of both the PCCSP and smear testing in general, leading to different views about appropriate time intervals for Pap-smear testing. The gynaecologists also described experiencing a number of dilemmas related to information content and provision--both prior to screening and in relation to test results. In addition, the gynaecologists tended to differentiate morally through choice of language between women who participate in some form of screening and non-attendees of the PCCSP. There also appeared to be distinctions in how these gynaecologists conceptualised and discussed women receiving Pap-smears, dependent on whether they were regarded as within the category of 'my patients' (seen by the gynaecologist in a private or public setting) or 'the population' (women unknown to the gynaecologist). This study indicates the importance of comprehensively analysing the context of professionals' work when attempting to understand professional attitudes. Seeming disparities in attitudes as well as varying practices may be explained by the simultaneous existence of multiple value systems, applied to different patient populations, as found in this study.Women's health Cervical cancer screening Private/public practice Gynaecologists Sweden Qualitative method