Lena Wettergren

Uppsala University | UU

Objective: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer. Methods: The study is part of the Fex-Can Young Adult randomized controlled trial...

Objective: The purpose of this study was to determine patients' perceptions of nurse caring behaviors and to identify factors associated with these perceptions. Methods: A cross-sectional study was conducted at three referral hospitals in Ethiopia. A consecutive sample of male and female patients (n = 652, response rate 98.8%) was interviewed us...

Background: People with kidney failure require renal replacement therapy in the form of dialysis or a kidney transplant for survival. Many facets of their life, both within and outside the dialysis unit, are impacted by the management of this disease. It is important to comprehend the experiences of people undergoing hemodialysis in order to impro...

Endocrine complications are a common late effect after childhood cancer. Our study assessed the prevalence and predictors of premature ovarian insufficiency (POI) and prospects of pregnancy in young female survivors. This nationwide study combined registry and survey data for female childhood cancer survivors aged 19 to 40 years, identified through...

Abstract Background Measurement of health-related quality of life (HRQOL) enables identification of treatment-related side effects of a disease. Such aspects may negatively impact on patients’ lives and should be taken into consideration in medical decision-making. In sub-Saharan Africa, research from the perspective of patients with chronic kidney...

Background: Sexual dysfunction is common following a cancer diagnosis in young adulthood (18-39 years) and problems related to sex life are ranked among the core concerns in this age group. Yet, few studies have investigated to what extent adults younger than 40, receive information from healthcare providers about the potential impact of cancer an...

Background The Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function and Satisfaction (SexFS) version 2.0 measurement tool was developed to assess sexual functioning and satisfaction in the general population regardless of health condition and sexual orientation. Aim The study aimed to evaluate the psychometric propert...

Background: Self-reported sex problems among women diagnosed with reproductive and nonreproductive cancers before the age of 40 are not fully understood. This study aimed to determine sexual dysfunction in young women following a cancer diagnosis in relation to women of the general population. Furthermore, to identify factors associated with sexua...

Aim To investigate prevalence of clinical cases with regard to health-related quality of life (HRQoL) and its association with socio-demographic and clinical factors among adult patients attending specialized cancer care in Uganda. Methods A cross-sectional study was performed with 385 patients cared for at Uganda Cancer Institute (response rate 95...

Aim: To investigate prevalence of clinical cases with regard to health-related quality of life (HRQoL) and its association with socio-demographic and clinical factors among adult patients attending specialized cancer care in Uganda. Methods: A cross-sectional study assessed HRQoL in 385 patients (response rate 95%) using the EORTC QLQ-C30. Predeter...

Background: The Caring Behaviors Inventory-16 (CBI-16) is a comprehensive instrument measuring caring behaviors as experienced by patients. The study aimed to translate, culturally adapt and evaluate the psychometric properties of the CBI-16 among adult patients who speak the Amharic language. Methods: The measure was completed by 304 hospitalized...

Background: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking. Objective: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) interv...

A new four-year Ph.D. programme in nursing and midwifery, the first of its kind in Ethiopia, was started in 2018/2019 at the University of Gondar when eight doctoral students in nursing and midwifery entered the program. We who have been involved see this as an appropriate time to evaluate what has been accomplished to date and to look toward futur...

Background Health-related quality of life (HRQOL) has a direct association with increased morbidity and mortality among end stage renal disease patients. Valid and reliable instruments to measure the HRQOL of patients with end stage renal disease are therefore required. This study aimed to translate, culturally adapt and evaluate the psychometric p...

Background Stigma is common among patients with chronic illnesses. It affects the delivery of healthcare for not addressing the psychological components and may interfere with the patient’s attendance to necessary health care services. Therefore, a valid and reliable instrument to measure anticipated stigma related to chronic illness is vital to in...

Objective To determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors. Methods All survivors of childhood cancer (aged 19–40 years) in Sweden were invited to this population-based study, and 2546 men and women (59%) participated. Sexual function was exam...

BACKGROUND Threatened fertility following a cancer diagnosis in reproductive age may severely impact on the emotional and psychosocial wellbeing in survivorship. Effective web-based interventions for fertility-related distress have so far been lacking. OBJECTIVE This study aimed to test if the Fex-Can intervention was superior to standard care in...

A new four-year Ph.D. programme in nursing and midwifery, the first of its kind in Ethiopia, was started in 2018/2019 at the University of Gondar when eight doctoral students in nursing and midwifery entered the program. We who have been involved see this as an appropriate time to evaluate what has been accomplished to date and to look toward futur...

Aim: To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. Design: Qualitative study using interviews and...

Background Self-reported measures play a crucial role in research, clinical practice and health assessment. Instruments used to assess self-reported health-related quality of life (HRQoL) need validation to ensure that they measure what they are intended to, detect true changes over time and differentiate between subjects. A generic instrument meas...

Background Infertility is a well-known sequela of cancer treatment. Despite guidelines recommending early discussions about risk of fertility impairment and fertility preservation options, not all patients of reproductive age receive such information. Aims This study aimed to investigate young adult cancer patients’ receipt of fertility-related in...

Background Self-reported measures play a crucial role in research, clinical practice and health assessment. Instruments used to assess self-reported health-related quality of life (HRQoL) need validation to ensure that they measure what they are intended to, detect true changes over time and differentiate between subjects. A generic instrument meas...

Introduction There is a lack of studies using validated instruments to investigate prevalence and predictors of sexual dysfunction among young adults. Aim This population-based observational study aimed to determine the prevalence and predictors of sexual dysfunction in young adults in Sweden and to compare sexual function in women and men. Metho...

Background: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultur...

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 fo...

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 chi...

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 o...

Background Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to culturally adapt the...

Background Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural...

Background: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultura...

Sexual and reproductive health is known to generally be insufficiently addressed by health care personnel working in cancer care. We hence developed a short educational intervention, Fex-Talk, to overcome the barriers to communicate about sexuality and fertility. The present study sought to evaluate the Fex-Talk intervention, which aims to enhance...

International guidelines recommend that health care providers initiate discussions about treatment impact on fertility with cancer patients of reproductive age, or with parents/legal guardians of children, as early as possible in the treatment process. Still, both physicians and patients confirm that this is not always the case. This literature rev...

The aim was to empirically test the tenets of Earnshaw and Chaudoir’s HIV stigma framework and its potential covariates for persons living with HIV in Sweden. Partial least squares structural equation modelling was used on survey data from 173 persons living with HIV in Sweden. Experiencing stigma was reported to a higher extent by younger persons...

Purpose: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. Methods: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All partic...

Objectives: To describe a characterize patients’ hearing health and to evaluate a method for tele-audiology in a hearing clinic in Nyeri in Kenya. Study design: Field study with quantitative approach using consecutive sampling of patients visiting the hearing clinic. Methods: Questionnaires were answered by patients to identify the amount of visito...

Purpose: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. Methods: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervou...

Background Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma...

Background: Children undergoing cancer therapy are at risk for infectious complications that require hospitalization and antimicrobial therapy. Host factors such as age and underlying disease may predict the risk of severe infections in these children. To describe the increased morbidity due to infections in children with cancer, we characterized...

Background: Cancer is a global public health challenge and how patients in countries with poor healthcare infrastructure experience cancer treatment is largely unknown. Purpose: The objective of this study was to describe adult Ugandan cancer patients' experiences of undergoing chemotherapy treatment. Methodology: Using a qualitative descripti...

Objective: This cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes. Methods: Participants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outco...

[This corrects the article DOI: 10.2196/resprot.5616.].

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...

Aim: Little is known about the health-related quality of life (HRQoL) of children with lower urinary tract dysfunction (LUTD) and chronic kidney disease (CKD). We investigated LUTD and other possible predictors of impaired HRQoL in children with conservatively treated moderate to severe CKD or with a kidney transplant. Methods: All 64 children w...

Background: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive...

Objective: The aim of the study was to examine patients' beliefs about having familial adenomatous polyposis (FAP), a hereditary colorectal cancer syndrome, and how these beliefs are associated with adherence to endoscopic surveillance. Methods: Adult patients diagnosed with FAP on the national Swedish polyposis register who had undergone prophy...

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 Childho...

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers...

HIV-related stigma has negative consequences for infected people's lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, d...

The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement propertie...

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 canc...

Background: The study aimed to investigate the meaning patients assign to two measures of quality of life: the Schedule for Evaluation of Individual Quality of Life Direct Weighting (SEIQoL-DW) and the SEIQoL-DW Disease Related (DR) version, in a clinical oncology setting. Even though the use of quality of life assessments has increased during the...

Background: Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study...

The aim of this study was to evaluate patients' experiences of oral implant surgery when performed in a student clinic setting and the potential impact on patients'daily life. Patient selection was carried out during a round, to which undergraduate students in semester 9 and 10 could bring patients that they considered eligible for one or two impla...

The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertility distress among survivors 3 to 7 years after cancer treatment in reproductive age. Cancer survivors were identified in national population-based cancer registries. Eligible subjects presented with selected cancer diagnoses between 2003 and 2007 betwee...

The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimens...

HIV is a stigmatizing medical condition. The concept of HIV stigma is multifaceted, with personalized stigma (perceived stigmatizing consequences of others knowing of their HIV status), disclosure concerns, negative self-image, and concerns with public attitudes described as core aspects of stigma for individuals with HIV infection. There is limite...

Background: There is a need to establish clinically relevant thresholds (anchors) for identification of differences in health-related quality of life (HRQoL) and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors. Aim: To investigate HRQoL in childhood cancer survivors with a standardised instrument and to establ...

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 been studied to a limited extent; an increased understanding of this young group is needed...

Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health-related quality of life (HRQoL) in long-term survivors of childhood lymphoblastic malignancy treated with conventi...

Background: The present study aimed to investigate the relationship between school attendance and infection requiring antimicrobial treatment in children undergoing treatment for cancer. Procedure: A national cohort of children aged 7-16 years undergoing cancer treatment was assessed during two observation periods of 19 days each, 1 month (n = 8...

Background There is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from perso...