Study protocol for the Fex-Can Childhood project An observational study and a randomized controlled trial focusing on sexual dysfunction and fertility-related distress in young adult survivors of childhood cancer

Background: This study protocol describes the Fex-Can Childhood project, comprising two studies: The Fex-Can Childhood observational study (OS) and the Fex-Can Childhood randomized controlled trial (RCT). The Fex-Can Childhood OS aims to determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young adult childhood cancer survivors (aged 19-40) compared to an age matched comparison group; the Fex-Can Childhood RCT will evaluate the effect of a web-based psycho-educational intervention (Fex-Can intervention) on sexual dysfunction and fertility-related distress. Methods: The Fex-Can Childhood OS will have a population-based cross-sectional design. All individuals treated for childhood cancer in Sweden at the age of 0 to 17 years (current age 19-40) will be identified through the National Quality Registry for Childhood Cancer. Established self-reported instruments will be used to measure sexual function, fertility-related distress, body image, anxiety and depression, and health-related quality of life. Self-efficacy related to sexual function and fertility, and fertility-related knowledge, will be assessed by study-specific measures. Clinical variables will be collected from the registry. Results will be compared to an age-matched comparison group from the general population. Participants in the Fex-Can Childhood OS who report a high level of sexual dysfunction and/or fertility-related distress will be invited to participate in the RCT. The Fex-Can intervention comprises two programs: The Fex-Can Sex and the Fex-Can Fertility targeting sexual dysfunction and fertility-related distress, respectively. The control condition will be a wait-list. Sexual function and fertility-related distress will be the primary outcomes. The secondary outcomes include body image, anxiety and depression, health-related quality of life and self-efficacy related to sexual function and fertility. Post- and follow-up assessments will be conducted directly after end of intervention (primary end point), at 3 months and 6 months after end of intervention. Additionally, a process-evaluation including study-specific items and a qualitative interview will be conducted. Discussion: The Fex-Can Childhood project will advance knowledge in the areas of sexual function and fertility-related distress among young adult survivors of childhood cancer. If the Fex-Can intervention proves to be efficacious, steps will be taken to implement it in the follow-up care provided to this population.Peer reviewe

Content Analysis of Online Focus Group Discussions are a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience

BACKGROUND: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. OBJECTIVE: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. METHODS: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members' evaluations of the discussions. RESULTS: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others' experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. CONCLUSIONS: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience

A web-based psycho-educational intervention (Fex-Can) targeting sexual dysfunction and fertility-related distress in young adults with cancer: study protocol of a randomized controlled trial.

BACKGROUND: This study protocol describes the clinical trial of the Fex-Can intervention, a web-based self-help program targeting sexual dysfunction and fertility-related distress. The psycho-educational intervention has been developed in collaboration with young patients with cancer and shown to be feasible. The primary objective is to determine whether the Fex-Can intervention, provided in addition to standard care, is superior to standard care in terms of reduction of sexual dysfunction and fertility-related distress directly after end of the 12-week program. The trial also aims to determine whether the intervention has an effect on the secondary outcomes including health-related quality of life, anxiety, depression, body image, fertility knowledge, and self-efficacy related to sexuality and fertility. METHODS: The trial has an randomized clinical trial (RCT) design with two parallel arms. The active groups receive either the version of the Fex-Can intervention targeting sexual problems or the version targeting fertility-related distress. Control groups receive standard care. Primary outcomes will be sexual function assessed with the Patient-Reported Outcomes Measurement Information System® Sexual Function and Satisfaction measure version 2.0 (SexFS) and fertility-related distress assessed with the Reproductive Concerns After Cancer scale (RCAC). The effect of the intervention will be evaluated directly after end of the program. Primary and secondary outcomes will also be assessed at the short- (12 weeks after end of program) and long-term (20 and 44 months after end of program) follow-up. At least 64 completers will be needed in each arm (total n = 256) to achieve adequate statistical power in the analyses. In order to increase the understanding of how the intervention brings about a possible change, semi-structured interviews will additionally be conducted with a purposeful sample shortly after completion of the intervention. DISCUSSION: If the Fex-Can intervention proves to be efficacious the necessary steps will be taken to implement it in routine care for young adults diagnosed with cancer. Healthcare could thereby be provided with an easily accessible, cost-effective intervention to offer to young adults suffering from fertility-related distress or sexual problems

Experiences of a web-based psycho-educational intervention targeting sexual dysfunction and fertility distress in young adults with cancer-A self-determination theory perspective.

INTRODUCTION: Sexual and reproductive health are significant aspects of quality of life. Healthcare often fails to provide adequate support for young cancer survivors in this area, hence the need to develop more effective interventions. The present study aimed to describe experiences of participating in a web-based psycho-educational intervention focusing on sexual dysfunction and fertility distress after cancer, and to explore these experiences within the theoretical frame of the basic psychological needs for competence, relatedness and autonomy according to self-determination theory. METHODS: Individual semi-structured interviews with 24 women and 4 men, age 19-40, were abductively analyzed using the Framework approach for qualitative content analysis. RESULTS: Participant experiences corresponded well with the three main deductive themes competence, relatedness and autonomy, divided into a total of nine subthemes illustrating varying degrees of basic need satisfaction with considerable nuance but not without ambiguity. While satisfaction of the need for competence could be linked to the amount of information in relation to participants' cognitive capacity, satisfaction of the need for relatedness seemed to be of special importance for these young adults with cancer experience. Invitation to the program meant a chance at alleviating loneliness and normalizing problems, symptoms and concerns. Participants' descriptions of perceived autonomy support were more challenging and ambiguous, because of the many contradictions in participants' responses to their variable situations. CONCLUSION: Basic psychological needs were confirmed as flexible positions along a continuum rather than discrete and mutually exclusive qualities. Understanding the variety of basic need satisfaction may enhance the design of future web-based interventions to be even more inclusive, tailorable and autonomy-supportive. Further research is warranted to determine the role of basic need satisfaction as a possible mediator for web-based psychoeducational interventions in cancer survivorship care

Adolescents' and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis

Background: Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has only been studied to a limited extent, and an increased understanding of this young group is needed to improve follow-up care. Objective: The aim was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents' and young adults' views of what it is like living with this experience. Methods: Fifty-nine people 11-22 years old were interviewed a median of five years after diagnosis (response rate 66%). Data was collected through telephone interviews and analysed with qualitative content analysis. Results: Three groups of informants were identified according to their descriptions of influence on daily life: ‘Feeling like anyone else’ (the informants who described that the cancer experience had almost no influence on current life) (49%), ‘Feeling almost like others’(those who described some influence) (44%) and ‘Feeling different’ (those describing a great influence on current life) (7%). Conclusions: Most of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. Implications for Practice: Necessary follow-up care that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer

”Hav mod att göra bruk av ditt eget förstånd” – Kritiskt tänkande i det sociala arbetets vardag"

Författare: Helena Lampic-Aaltonen och Björn Söderström Titel: ”Here be dragons” – kritiskt tänkande i det sociala arbetets vardag Handledare: Gunilla Lindén Examinator: Katarina Jacobsson Uppsatsens syfte var att skapa en förståelse för hur socionomer upplever kritiskt tänkande och vilket utrymme som finns för detta i det sociala arbetets vardag. Det är en kvalitativ studie baserad på semistrukturerade intervjuer med socionomer inom socialtjänsten som utreder barn och unga. Deras berättelser analyserades framför allt genom de begrepp Goffman beskriver i Jaget och Maskerna. Uppsatsen visar att ett kritiskt tänkande kräver stöd i form av tid för reflektion samt en arbetsplats som uppmuntrar till kritiskt tänkande. Om den roll som socionomen tar och den roll som arbetsplatsen uppmuntrar inte passar ihop riskerar detta att skapa en destruktiv miljö för socionomen. I vissa fall kan det gå så långt att socionomen känner sig tvingad att byta arbetsplats. Nyckelord: kritiskt tänkande och socialt arbete, reflection-in-action och socialt arbete, higher-order thinking skillsAuthors: Helena Lampic-Aaltonen and Björn Söderström Title: “Have the courage to make use of your own mind” – critical thinking in everyday social work Supervisor: Gunilla Lindén Examiner: Katarina Jacobsson The purpose of this essay was to investigate how social workers experience critical thinking and to analyze the boundaries that exist for critical thinking in everyday social work. This study was based upon interviews conducted with practicing social workers who are involved in child and youth issues. The interviews were then analyzed, primarily through the theories presented by Goffman in “The Presentation of Self in Everyday Life”. The essay shows that effective critical thinking requires a workplace that supports not only its use, but also the investment of time required to reflect upon the specifics of the case. If there is a misalignment between the role that the social worker performs and the role that the workplace encourages, there is a risk that a destructive environment is created for the social worker which, in certain cases, will cause the social worker to change workplace. Keyword: critical thinking and social work, reflection-in-action and social work higher-order thinking skill

Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group

Background: There is a need for more knowledge about how survivors of childhood cancer perceive their lives and what influence current health status has on their quality of life. The purpose was to describe this among a group of long-term survivors and among a comparison group. Procedure: Telephone interviews were performed with a cohort of 246 long-term survivors and 296 randomly selected from the general population using the Schedule for the Evaluation of Individual Quality of Life- Direct Weighting (SEIQoL-DW). The participants nominated the areas they considered to be most important in life and rated the current status of each area on a seven-point category scale. An overall individual index score was calculated as a measure of quality of life. Self-reported health status was assessed using the Short Form Health Survey (SF-36). Results: Long-term survivors rated their overall quality of life and self-reported health status almost in parity with the comparison group. In both groups, family life, relations to other people, work and career, interests and leisure activities were the areas most frequently reported to influence quality of life. The survivors only differed from the comparison group on one of eight SF-36 scales reflecting problems with daily activities owing to physical health. Conclusions: Health status was not shown to have a major impact on overall quality of life, indicating that health and quality of life should be evaluated distinctively as different constructs. This should be taken in consideration in clinical care of children with childhood cancer and long-term survivors

Intentions and Attitudes Towards Parenthood and Fertility Awareness Among Chinese University Students in Hong Kong: A Comparison with Western Samples

STUDY QUESTION What are the levels of awareness regarding female fertility and the intentions and attitudes towards parenthood among Chinese university students in Hong Kong compared with their counterparts in the West? SUMMARY ANSWER Chinese university students in Hong Kong were similarly over-optimistic about the age-related fertility decline, although they were less inclined to have children and undergo fertility treatment compared with their Western counterparts. WHAT IS KNOWN ALREADY Past studies of highly educated young adults in Europe and the USA have found that they are not sufficiently aware of the age-related decline in female fertility, and falsely believe that advanced reproductive treatments such as IVF will overcome fertility problems associated with age. Little is known about the perceptions of Chinese students in Hong Kong, a modernized Chinese city where the fertility rate is among the lowest in the world. STUDY DESIGN, SIZE, DURATION An online cross-sectional survey of Chinese university students in Hong Kong was conducted in 2013. Results were compared with two similar studies in Sweden and the USA. PARTICIPANTS/MATERIALS, SETTING, METHODS A total of 367 university students in Hong Kong (275 female, 92 male; mean age 23) responded to an e-mail invitation to participate in an online survey. Intentions and attitudes towards parenthood and awareness regarding female fertility were assessed using the Swedish Fertility Awareness Questionnaire. MAIN RESULTS AND THE ROLE OF CHANCE Like their Western counterparts, a large proportion of Chinese university students underestimated the age-related fertility decline (92%) and overestimated the fertility treatment success rate (66%). However, they were less inclined to have children, were more aware of and less concerned with infertility and were less motivated to seek solutions in the event of a fertility problem. These comparisons were significant at P \u3c 0.05. LIMITATIONS, REASONS FOR CAUTION Self-selection bias was inevitable in the questionnaire survey, and the anonymous nature of the survey did not permit the collection of characteristics of non-responders. International comparisons warrant caution because the Hong Kong sample was older than the US sample (mean age 20), but not older than the Sweden sample (mean age 24). WIDER IMPLICATION OF FINDINGS While this study was consistent with past Western studies on the lack of fertility awareness among highly educated young people, the findings reveal significant cultural differences in family planning and responses to infertility between Asia and the West

What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

Background: Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research. Methods: The aim and procedures of this study were jointly decided upon by PRPs and researchers. The PRPs included former patients treated for cancer and significant others of the same target group. The participants (11 PRPs, 6 researchers) took part in semi-structured telephone interviews. The interviews were analysed using qualitative content analysis by a researcher who had no prior relationships with the participants. Results: Five overarching categories were identified: Reasons for investing in a long-term collaboration, Benefits of participating, Improving the research, Elements of success and Challenges and ways to improve. Reasons for investing in the collaboration included the desire to improve cancer care and to make use of own negative experiences. Benefits of participating included a positive impact on the PRPs' psychosocial adjustment to the illness. Moreover, the researchers highlighted that working together with the PRPs made the research feel more meaningful. The participants reported that the collaboration improved the relevance and acceptability of the research. Having a shared goal, a clear but yet accommodating structure, as well as an open and trustful working atmosphere were recognised as elements of success. The PRPs furthermore emphasized the importance of seeing that their input mattered. Among the few challenges raised were the distance to the meeting venues for some PRPs and a limited diversity among participants. Conclusions: This study identified factors essential to researchers and clinicians attempting to engage the public in research. Our results suggest that for successful patient involvement, the purpose and format of the collaboration should be clear to both PRPs and researchers. A clear but yet accommodating structure and keen leadership emerged as key factors to create a sense of stability and a trustful atmosphere. Furthermore, providing regular feedback on how PRPs input is implemented is important for PRPs to stay committed over time