Prevalence of mental distress and factors associated with symptoms of major depression among people living with HIV in Norway.

For people living with HIV (PLHIV) who can access lifesaving treatment, HIV has become a chronic lifelong condition; however, PLHIV have more mental and somatic comorbidities than their HIV-negative peers. In this cross-sectional study, we assessed the prevalence of mental distress and identified factors associated with major depression among 244 well-treated PLHIV residing in Norway. Participants completed validated questionnaires covering mental and somatic health. The prevalence of mental distress, defined as a score on the Hopkins Symptom Check List-25 >1.75, was 32%, and that of symptoms of major depression, defined as a score on the Beck Depression Inventory-II ≥20, was 15%. The factors associated with major depressive symptoms identified using logistic regression were risk of drug abuse (adjusted odds ratio (AOR) 15.1, 95% confidence interval (CI) 3.28, 69.3), fatigue (AOR 12.5, 95% CI 3.90, 40.0), trouble sleeping (AOR 7.90, 95% CI 2.85, 21.9), African origin (AOR 3.90, 95% CI 1.28, 11.9), low education (AOR 3.31, 95% CI 1.18, 9.30), and non-disclosure (AOR 3.22, 95% CI 1.04, 10.0). Our findings indicate that the prevalence rates of mental distress and major depressive symptoms are higher among well-treated PLHIV residing in Norway than in the general population. These conditions are under-diagnosed and under-treated, and increased awareness is needed.

Acceptability and usefulness of the EORTC 'Write In three Symptoms/Problems' (WISP): a brief open-ended instrument for symptom assessment in cancer patients.

BACKGROUND: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended 'Write In three Symptoms/Problems (WISP)' instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. METHODS: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. RESULTS: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. CONCLUSIONS: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.

Shared decision-making in palliative cancer care: A systematic review and metasynthesis.

BACKGROUND: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. AIM: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. DESIGN: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. DATA SOURCES: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. RESULTS: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. CONCLUSION: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.

The relationship between gender, psychosocial factors, pain, health literacy and health-related quality of life in parents of Norwegian adolescents one year into the COVID-19 pandemic.

BACKGROUND: Stress impacts healthy behaviours and may influence life and health-related quality of life (HRQOL). A stressful event occurred when the COVID-19 pandemic hit in March 2020. The present study aims to explore possible gender differences in stress, psychosocial factors (self-efficacy, self-esteem, loneliness), pain, HL, and HRQOL in parents of adolescents one year into the COVID-19 pandemic, and to explore possible associations between gender, demographic and psychosocial factors, pain, HL, and HRQOL. METHODS: Parents of adolescents aged 16-17 took part in the study from January to February 2021, when the COVID-19 pandemic was ongoing. Data on socio-demographics, stress, self-efficacy, self-esteem, pain, HL, loneliness, and HRQOL were collected. HRQOL was assessed using RAND-36. RESULTS: Among the 320 parents from the general population, the mean age was 47.6 (standard deviation (SD) = 4.6) years, 81% were mothers, 79% were married or cohabiting, 81% had a university degree, and the majority worked full time (78%) or part time (13%). The average pain score was low, 0.48 (95% CI [0.43-0.54]). However, 50% of the parents reported persistent pain and more mothers reported persistent pain compared to fathers (53% vs. 37%). The parents' mean (SD) score for RAND-36 was 52.1 (95% CI [51.2-53.0]) for the physical component summary (PCS) score and 51.0 (95% CI [50.0-52.1]) for the mental component summary (MCS) score. Mothers reported significantly lower scores for all the eight RAND-36 domains and the PCS and MCS scores. Adjusting for gender, age, living condition, education, pain, HL, self-efficacy and loneliness, we revealed no associations between stress and RAND-36-PCS. University education of four years or more was positively associated (B = 3.29, 95% CI: [0.78-5.80]) with RAND-36-PCS, while persistent pain was negatively associated (B = -7.13, CI: [-9.20- -5.06]). We identified a strong negative association between RAND-36-MCS and stress (B = -43.11, CI: [-48.83- -37.38]) and a positive association with older age (B = 0.21, CI: [ 0.04, 0.39)]. CONCLUSION: One year into the COVID-19 pandemic, we identified a strong negative association between stress and mental HRQOL, while pain was strongly negatively associated with physical HRQOL.

Factors associated with health-related quality of life in people living with HIV in Norway.

BACKGROUND: Despite the advances in the treatment of HIV, people living with HIV (PLHIV) still experience impairment of health-related quality of life (HRQOL). The aim of the study was to explore factors associated with HRQOL in a well-treated Norwegian HIV population. METHODS: Two hundred and forty-five patients were recruited from two outpatient clinics to participate in this cross-sectional study of addiction, mental distress, post-traumatic stress disorder, fatigue, somatic health, and HRQOL. The latter was measured using the 36-Item Short Form Health Survey (SF-36). Stepwise multiple linear regression analysis was used to examine the adjusted associations between demographic and disease-related variables and HRQOL. RESULTS: The study population was virologically and immunologically stable. Their mean age was 43.8 (SD = 11.7) years, 131 (54%) were men, and 33% were native Norwegians. Compared with the general population (published in previous studies), patients reported worse SF-36 scores for five of eight domains: mental health, general health, social function, physical role limitation, and emotional role limitation (all p < 0.001). Compared with men, women reported better SF-36 scores within the domains vitality (63.1 (23.6) vs. 55.9 (26.7), p = 0.026) and general health (73.4 (23.2) vs. 64.4 (30.1), p = 0.009). In the multivariate analyses, higher SF-36- physical component score values were independently associated with young age (p = 0.020), being employed, student, or pensioner (p = 0.009), low comorbidity score (p = 0.015), low anxiety and depression score (p = 0.015), being at risk of drug abuse (p = 0.037), and not being fatigued (p < 0.001). Higher SF-36-mental component score values were independently associated with older age (p = 0.018), being from a country outside Europe or from Norway (p = 0.029), shorter time since diagnosis, low anxiety and depression score (p < 0.001), answering 'no' regarding alcohol abuse (p = 0.013), and not being fatigued (p < 0.001). CONCLUSIONS: HRQOL was poorer in PLHIV than in the general population in Norway. It is important to focus on somatic and mental comorbidities when delivering health-care services in the ageing population of PLHIV to improve HRQOL even among a well-treated group of PLHIV as found in Norway.

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies.

BACKGROUND: Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer. METHODS: Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8-14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above. RESULTS: Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for 'treatment burden', 'treatment involvement', and 'financial issues'. Physical and psychological aspects were more frequently covered than social issues. DISCUSSION: This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.

What outcomes do studies use to measure the impact of prognostication on people with advanced cancer? Findings from a systematic review of quantitative and qualitative studies.

BACKGROUND: Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important. AIM: To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcome set for prognostic impact studies. DESIGN: A systematic review was conducted and analysed in two subsets: one qualitative and one quantitative. (PROSPERO ID: CRD42022320117; 29/03/2022). DATA SOURCES: Six databases were searched from inception to September 2022. We extracted data describing (1) outcomes used to measure the impact of prognostication and (2) patients' and informal caregivers' experiences and perceptions of prognostication in advanced cancer. We classified findings using the Core Outcome Measures in Effectiveness Trials (COMET) initiative taxonomy, along with a narrative description. We appraised retrieved studies for quality, but quality was not a basis for exclusion. RESULTS: We identified 42 eligible studies: 32 quantitative, 6 qualitative, 4 mixed methods. We extracted 70 outcomes of prognostication in advanced cancer and organised them into 12 domains: (1) survival; (2) psychiatric outcomes; (3) general outcomes; (4) spiritual/religious/existential functioning/wellbeing, (5) emotional functioning/wellbeing; (6) cognitive functioning; (7) social functioning; (8) global quality of life; (9) delivery of care; (10) perceived health status; (11) personal circumstances; and (12) hospital/hospice use. CONCLUSION: Outcome reporting and measurement varied markedly across the studies. A standardised approach to outcome reporting in studies of prognosis is necessary to enhance data synthesis, improve clinical practice and better align with stakeholders' priorities.

Sleep duration in schooldays is associated with health-related quality of life in norwegian adolescents: a cross-sectional study.

BACKGROUND: Insufficient sleep is commonly reported in adolescence and is negatively associated with a wide range of health outcomes. A way to grasp the complicated challenge of how sleep impact different aspects of the adolescents´ everyday life is by examining the relationship between sleep duration in schooldays and weekends on different health-related quality of life (HRQOL) subscales. Furthermore, to expand the understanding of possible underlying mechanisms between sleep and HRQOL, testing for self-efficacy as a possible mediator is of importance. METHODS: A cross-sectional study was performed among 696 adolescents aged 13-15 years from a school-based setting. All participants completed an electronic survey in their respective classrooms. The survey included demographic data, the School Sleep Habits Survey, the KIDSCREEN-27 questionnaire measuring HRQOL, and the General Perceived Self-Efficacy Scale. Statistical analyses were conducted using SPSS Statistics software including PROCESS macro by Andrew Hayes. RESULTS: Our findings revealed overall similar sleep patterns in boys and girls including longer sleep duration in the study sample during weekends (10:09 h) than in schooldays (08:36 h). Regression analyses revealed that sleep duration in schooldays was positively and statistically associated with HRQOL subscales psychological well-being (95% CI [0.44 to 1.33]), autonomy and parents (95% CI [0.12 to 1.06]), school environment (95% CI [0.47 to 1.40]), and self-efficacy (95% CI [0.01 to 0.47]). Sleep duration in weekends revealed no associations with the HRQOL subscales, except for the HRQOL subscale psychological well-being (95% CI [0.09 to 0.85]). Mediation analyses revealed that sleep duration in schooldays explained most of the associations (64 - 75%) in 4 out 5 HRQOL subscales, except in the association with the HRQOL subscale physical well-being revealing an indirect effect of 71.9%. CONCLUSIONS: This cross-sectional study described sleep among Norwegian adolescents and demonstrated that sleep durations in weekends and schooldays impact HRQOL and self-efficacy, revealing overall better outcome in HRQOL and self-efficacy with sufficient sleep during schooldays. These findings support the regularity of sleep and highlight the importance of sufficient sleep during schooldays, especially in a school-based sample of adolescents.

Being a nursing student during the coronavirus pandemic: a mixed methods study.

BACKGROUND: The COVID-19 pandemic led to major changes in people's lives via protective strategies aimed at limiting the transmission of COVID-19, including social distancing, lockdowns, cancelled or limited leisure activities and tutorials and supervision for students taking place digital. All of these changes may have influenced students' health and quality of life. AIM: To describe and explore fear of COVID-19 and psychological distress, as well as general health and quality of life, among baccalaureate nursing students at 1 year into the COVID-19 pandemic. METHOD: We used a mixed method study design, including quantitative data from University of Agder, data that was a part of a national survey of baccalaureate nursing students nearly one year into the pandemic. All the nursing students at the university were invited to take part between 27 January and 28 February 2021. The quantitative survey included 396 (out of total 858) baccalaureate nursing students (response rate: 46%). The quantitative data were collected using well-validated measures of fear of COVID-19, psychological distress, general health and quality of life, and the data were analysed using the ANOVA-tests for continuous data and chi-square tests for categorical data. Qualitative data were gathered from focus group interviews from the same university two-three months later. Five focus group interviews were conducted with a total of 23 students (7 men, 16 women). The qualitative data were analysed using systematic text condensation. RESULTS: The mean score (standard deviation [SD]) for fear of COVID-19 was 2.32 (0.71), for psychological distress was 1.53 (1.00), for general health was 3.51 (0.96) and for overall quality of life was 6.01 (2.06). In the qualitative data, we identified the overarching theme effect of COVID-19 on students' quality of life and the three main themes; importance of personal relations, physical health challenges and mental health challenges. CONCLUSION: The COVID-19 pandemic influenced negatively nursing students' quality of life and physical and mental health, and they often felt lonely. However, most of the participants also adapted strategies and resilience factors to cope with the situation. Via the pandemic situation, the students learned additional skills and mental mindsets that may be useful in their future professional lives.

Stress, pain, and work affiliation are strongly associated with health-related quality of life in parents of 14-15-year-old adolescents.

BACKGROUND: For many adults, their role as a parent is a vital part of their lives. This role is likely to be associated with a parent's health-related quality of life (HRQOL). The aim of this study was to explore the associations between gender, demographic and psychosocial variables, pain, and HRQOL in parents of 14-15-year-old adolescents. METHODS: This was a cross-sectional study that included 561 parents. Data on demographic, psychosocial variables and pain were collected using validated instruments. HRQOL was assessed using the RAND-36. Data were analysed using univariate and hierarchical multiple linear regression analyses. RESULTS: Four hundred and thirty-six (78%) mothers and 125 (22%) fathers with a mean age of 45 (SD = 5) years were included. Eighty-one per cent were married/cohabiting, 74% worked full time, and 50% had university education of more than 4 years. Almost one-third reported daily or weekly pain, and more than half (58%) reported using pain analgesics during the previous 4 weeks. Mothers reported significantly lower scores on self-efficacy, self-esteem and for all RAND-36 domains, including the physical component summary (PCS) and mental component summary (MCS) and experienced greater stress than fathers. Hierarchical regression analyses showed that working part-time (beta = 0.40) or full time (beta = 0.52) (reference: not working) had the strongest positive effect on PCS. Absence from work for > 10 days (beta = -0.24) (reference: no absence), short-term pain (beta = -0.14), chronic pain (beta = -0.37) (reference: no pain), and stress (beta = -0.10) had the strongest negative effects on PCS. High self-esteem (beta = 0.11) had the strongest positive effect, whereas stress (beta = -0.58) and absence from work for > 10 days (beta = -0.11) (reference: no absence) had the strongest negative effects on MCS. CONCLUSION: Mothers reported significantly lower scores on self-efficacy, self-esteem, and HRQOL, and experienced greater stress than the fathers. A high proportion of parents reported pain. Pain, stress, and low work affiliation were strongly associated with decreased HRQOL in parents. We recommend that parents of adolescents should be provided guidance about coping with pain and stress, and facilitation of a strong work affiliation because these seem to be important to parents' HRQOL.

The relationship between stress and health-related quality of life and the mediating role of self-efficacy in Norwegian adolescents: a cross-sectional study.

BACKGROUND: During the transitional phase from childhood to adulthood, adolescents encounter many changes and challenges. Stress is associated with reduced health-related quality of life (HRQOL) in adolescents and, thus, impacts all aspects of their life. Adolescents' thoughts and beliefs in their capacity may be essential with regard to their subjective perception of stress and coping with it. Insights into the complexity of stress and exploration of the possible underlying mechanisms in adolescence are needed. We sought to describe stress, HRQOL, and self-efficacy and explore the association between stress and HRQOL by testing for self-efficacy as a possible mediator in adolescents. METHODS: In total, 696 school-based adolescents aged 14-15 years participated in this study. Participants were recruited from 22 schools in the Eastern and Southern parts of Norway. All participants completed an electronic survey in their respective classrooms. The survey included demographic data, the Perceived Stress Questionnaire, the KIDSCREEN-27 questionnaire measuring HRQOL, and the General Perceived Self-Efficacy Scale. Statistical analyses were conducted using the PROCESS macro for SPSS Statistics software by Andrew Hayes model 4. RESULTS: Descriptive analyses revealed overall low levels of stress with a score of 0.29 (SD, 0.15). Nevertheless, stress was negatively associated with all HRQOL subscales: physical well-being (B = - 25.60), psychological well-being (B = - 38.43), autonomy and parents (B = - 28.84), social support and peers (B = - 21.05), and school environment (B = - 30.28). Furthermore, these respective associations were all mediated by self-efficacy, which explained approximately one-fifth of the reduction in HRQOL. The highest degree of mediation and, thus, the largest indirect effect was estimated for the HRQOL subscale physical well-being (31.7%). CONCLUSIONS: Our findings extend prior research on the mechanisms underlying the relationship between perceived stress and HRQOL in adolescents. They demonstrated that perceived stress explained most of the reduction in the HRQOL after adjusting for the effect of self-efficacy. Hence, stress itself appears to be an important target for future interventions to enhance HRQOL, rather than purely focusing on increasing self-efficacy to enhance the HRQOL in adolescents. Our findings highlight the importance of a better understanding of the underlying mechanisms to develop strategic and accurate interventions for adolescents.

Changes in health-related quality of life in adolescents and the impact of gender and selected variables: a two-year longitudinal study.

BACKGROUND: Increased knowledge about factors that can impact changes in adolescents' health-related quality of life (HRQOL) is needed. The present study aimed to investigate possible HRQOL changes in adolescents at 14 and 16 years, and assess the impact of sociodemographic factors, gender, pain, self-esteem, self-efficacy, loneliness, and stress on HRQOL changes over time. Further, to assess HRQOL stratified by gender. METHODS: A longitudinal study involving 211 adolescents was conducted. Sociodemographic variables, pain, self-esteem, self-efficacy, loneliness, and stress were all assessed with well-validated instruments. KIDSCREEN-27 was used to measure HRQOL. Data were analyzed using independent t-tests, paired samples t-tests, and linear mixed models for repeated measures. RESULTS: When all variables were added to the linear mixed models, stress, loneliness, and pain were significantly, independently associated with a reduction in HRQOL change scores for four of the five KIDSCREEN subscales. Time was significantly associated with a reduction in physical and psychological well-being. Self-efficacy and self-esteem were significantly associated with an increase in HRQOL change scores for four and two subscales, respectively. Male gender was significantly negatively associated with changes in social support and peers compared to female gender. CONCLUSION: Our results demonstrated a significant decline in adolescents' HRQOL regarding physical and psychological well-being for the age range 14-16 years. Furthermore, we found that stress, loneliness, and pain have a significant negative impact on HRQOL changes, whereas self-esteem and self-efficacy have a significant positive impact. Our results highlight the importance of increased understanding regarding factors associated with changes in adolescents' HRQOL to enable accurate and strategic interventions.

Health-related quality of life in parents of adolescents one year into the COVID-19 pandemic: a two-year longitudinal study.

AIM: For many adults, their role as a parent is a vital part of their life that may influence their health-related quality of life (HRQOL) and vary with the age of their child. The aim of the present study was to describe and compare sociodemographic and psychological factors, pain and HRQOL in parents of adolescents assessed at baseline and 2 years later,-during the COVID-19 pandemic. METHODS: A longitudinal study of 309 parents from the general Norwegian population was conducted. The parents were chosen based on their adolescent's school belonging and responded to a web-based questionnaire. We used data collected at baseline (T1), when the adolescents were aged 14-15 years (2018/2019), and two years later (T2), in 2021, when the COVID-19 pandemic was ongoing. The response rate was 55%. HRQOL was assessed using RAND-36. Data were analysed using McNemar tests, paired samples t-tests and multiple linear regression analyses. RESULTS: Of the participants, 82% were mothers and 18% fathers. From T1 to T2, the average pain score increased, 1.6 (95% CI [-1,4; 1.8]) vs 1.8 (95% CI [1,6; 2.0]), the pain interference emotion score increased, 1.6 (95% CI [1.3; 1.9]) vs 1.8 (95% CI [1.5; 2.1]), and a larger proportion reported pain duration > 3 months (44% vs 50%, p = 0.014). The parents were more lonely, 12.8 (95% CI [12.3; 13.3]) vs 13.7 (95% CI [13.2; 14.2]), and reported lower RAND-36 mental component summary (MCS) scores, 52.2 (95% CI [51.3; 53.2]) vs 50.9 (95% CI [49.8; 52.0]). There were no significant associations between gender, sociodemographic factors, psychological factors, pain at T1 and changes in RAND-36 physical component summary (PCS). A positive change in MCS from T1 to T2 was predicted by working part time, B = 5.22 (95% CI [1.05; 9.38]) (ref no paid work) and older age, B = 0.24, (95%CI [-001; 0.42]), and there was a negative change with stress, B = -17.39, (95%CI [-27.42; -7.51]). CONCLUSION: The parents experienced more pain and were lonelier, and more reported reduced mental HRQOL. However, the changes appear to be of limited clinical significance.

If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research.

BACKGROUND: The growth in response-shift methods has enabled a stronger empirical foundation to investigate response-shift phenomena in quality-of-life (QOL) research; but many of these methods utilize certain language in framing the research question(s) and interpreting results that treats response-shift effects as "bias," "noise," "nuisance," or otherwise warranting removal from the results rather than as information that matters. The present project will describe the various ways in which researchers have framed the questions for investigating response-shift issues and interpreted the findings, and will develop a nomenclature for such that highlights the important information about resilience reflected by response-shift findings. METHODS: A scoping review was done of the QOL and response-shift literature (n = 1100 articles) from 1963 to 2020. After culling only empirical response-shift articles, raters characterized how investigators framed and interpreted study research questions (n = 164 articles). RESULTS: Of 10 methods used, papers using four of them utilized terms like "bias" and aimed to remove response-shift effects to reveal "true change." Yet, the investigators' reflections on their own conclusions suggested that they do not truly believe that response shift is error to be removed. A structured nomenclature is proposed for discussing response-shift results in a range of research contexts and response-shift detection methods. CONCLUSIONS: It is time for a concerted and focused effort to change the nomenclature of those methods that demonstrated this misinterpretation. Only by framing and interpreting response shift as information, not bias, can we improve our understanding and methods to help to distill outcomes with and without response-shift effects.

Comparing the use of patient-reported outcomes in clinical studies in Europe in 2008 and 2018: a literature review.

PURPOSE: Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specific criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. METHODS: A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specific criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. RESULTS: The search identified 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specific limitations and implications was higher in 2018 than in 2008, but there were no differences in the other selected PRO-specific criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included ≥ 300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. CONCLUSION: The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little difference in compliance with the PRO-specific criteria. The studies varied in terms of study design and PRO instruments used in both publication years.

Health-related quality of life, health literacy and COVID-19-related worries of 16- to 17-year-old adolescents and parents one year into the pandemic: a cross-sectional study.

BACKGROUND: The uncertain and challenging situation caused by the COVID-19 pandemic affects adolescents and their parents in an exceptional way. More knowledge of health-related quality of life (HRQoL), health literacy (HL) and COVID-19-related worries in adolescents and parents 1 year into the pandemic is needed. The present study aimed to describe HRQoL, HL and COVID-19-related worries of 16- to 17-year-old adolescents and parents of adolescents. Further, to assess the strength of associations between gender, HL, COVID-19-related worries and HRQoL. METHODS: A cross-sectional study involving 215 adolescents and 320 parents was conducted, exploring HRQoL, HL, COVID-19-related worries and sociodemographic variables. KIDSCREEN-10 and RAND-36 were used to measure HRQoL. Data were analyzed using bivariate methods, multiple linear regression and robust regression. RESULTS: Adolescents' HRQoL was notably lower compared to previous Norwegian studies and European norms. Parents' HRQoL was comparable to Norwegian norms. Adolescents and parents reported moderate-to-high HL and high degrees of COVID-19-related worries. Females reported significantly lower HRQoL and more worries compared to males. In adolescents, higher HL was significantly associated with higher HRQoL. COVID-19-related worries were not significantly associated with HRQoL. In parents, higher HL in the "understand health information" domain was significantly associated with higher HRQoL for mental well-being (mental component sum scores [MCS]) and with lower HRQoL for physical well-being (physical component sum scores [PCS]). Being worried a lot about infecting others and about family/friends becoming sick was significantly associated with higher MCS and lower MCS, respectively. COVID-19-related worries were not significantly associated with PCS. CONCLUSIONS: Our results indicate that the pandemic has a major negative impact on adolescents' HRQoL. Parents' HRQoL remained unchanged and comparable to previous studies. Our study demonstrates that HL, gender and COVID-19-related worries are significantly associated with adolescents' and parents' HRQoL, indicating that efforts aimed at increasing their HL might indirectly affect their HRQoL as well and that gender-specific interventions or strategies could be beneficial.

Navigating the care between two distinct cultures: a qualitative study of the experiences of Arabic-speaking immigrants in Norwegian hospitals.

BACKGROUND: During the past decades, there has been an increase in the number of immigrants to European and Scandinavian countries. This has challenged the health-care systems, which cater to the needs of patients despite their cultural and linguistic barriers, in these countries. Most studies on this topic have focused on the perspectives of health-care providers in delivering their service. The purpose of this qualitative study was to explore how hospitalized Arabic-speaking patients experienced their interaction with the Norwegian health-care system. METHODS: In-depth interviews with 20 participants and researcher's participant observation were conducted to explore the idiosyncratic details and ascribed meanings that foreign-born patients attach to their everyday experience of the Norwegian health-care system. Thematic analysis was performed on the transcribed and translated versions of the in-depth interviews. RESULTS: The findings of this study indicated three interrelated core themes. Firstly, there exist challenges in understanding and being understood because of linguistic and cultural differences of newly migrated patients. Secondly, some patients missed the holistic and direct care available in their home countries. Finally, patients were satisfied with the Norwegian health-care system because of its compassion, care, and respect toward them as well as advanced health-care equipment. CONCLUSION: Arabic-speaking patients in Norwegian hospitals experienced long waiting times and linguistic problems. Hence, a better and specialized interpreter service may resolve problems emanating from communication within the system and the subsequent delays in treatment. Compassionate care and the feeling of respect and love is the core strength of the Norwegian system as perceived by the patients.

Beyond challenges and enrichment: a qualitative account of cross-cultural experiences of nursing patients with an ethnic minority background in Norway.

BACKGROUND: Substantial mass migrations to the Scandinavian countries have made them heterogeneous and multicultural societies. Migration has also influenced the workforce, especially the healthcare system that has had to accommodate a culturally diverse population. This qualitative study aimed to explore nurses' experiences in caring for patients with an ethnic minority background. METHODS: Focus group interviews with a total of 21 nurses were conducted. Thematic analysis was performed on the transcribed and translated interviews. RESULTS: The findings of this study revealed three major themes: various experiences concerning language barriers and the use of interpreters, the impact of religious and cultural values, and caring for patients with an ethnic minority background is professionally interesting but demanding. CONCLUSIONS: Caring for culturally diverse patients offers both challenges and opportunities to enhance cultural competence and cultural sensitivity among nurses. Various culturally divergent needs of patients such as family visits, food preferences, expression of pain, and gender sensitivity are interlinked and depend on effective communication during encounters with nurses and the healthcare system at large.

Baccalaureate nursing students' experiences of how the COVID-19 pandemic influenced learning - a mixed method study.

BACKGROUND: The COVID-19 pandemic mandated the reconstruction of educational programs globally. For nursing students in need of practical learning and training as a part of their curriculum, the pandemic also caused restrictions and alterations in practical placements and limited access to simulation training at campuses. The aim of this study is therefore, to describe and explore how the COVID- 19 pandemic influenced baccalaureate nursing students' experiences of learning and their social life as a student. METHOD: We used a mixed method study design including quantitative data from one of the universities (University of Agder) from a national Norwegian survey of baccalaureate nursing students and qualitative data from focus-group interviews from the same university. The quantitative survey included 396 baccalaureate nursing students (response rate, 46%). We arranged five focus groups with a total of 23 students (15 females and 8 males). The students took part in one of the focus-group interviews. The quantitative data were analyzed using chi-square test for categorical data and ANOVA tests for continuous data, while the qualitative data were analyzed using Systematic Text Condensation and an editing analysis style. RESULTS: Most students (70%) were concerned about the quality of the education program. In clinical placement, 83% of students had cared for patients with confirmed COVID-19 or unclear COVID-19 status. The qualitative data revealed three main themes: missing the social dimension of learning; worries and challenges in clinical placement; and experiencing normal instructive days in clinical placement. The general picture emerging from our analysis is the importance of social interactions for learning. CONCLUSION: As the COVID-19 pandemic continues, our findings of students' worries about the quality of the education program and not reaching learning outcomes must be taken into consideration. Social interaction is considered crucial and fundamental for student learning. A follow-up study following baccalaureate completion is necessary to explore the consequences over time of disrupted education.

Working as a nurse in community health services during Covid-19: a qualitative study.

BACKGROUND: During the Covid-19 pandemic, new roles, increased workload, lack of staffing and infection control equipment, unclear infection control guidelines and conflicting information have led to uncertainty and unpredictability for health workers. Although community home-care nurses have been exposed to a range of personal and professional stressors during the pandemic, few studies have focused on their experiences. The aim of this study was to explore how Norwegian home-care nurses experienced the first wave of the Covid-19 pandemic. This knowledge may contribute to preparations for meetings with patients in future pandemics, how management can support its employees and how to structure a successful organization. METHODS: This study was a qualitative descriptive design comprising 12 semi-structured individual interviews with home-care nurses. A thematic analysis was carried out. RESULTS: Four main themes and 11 subthemes were constructed. The results revealed challenges related both to the organization and to management, experiences of unclear information, lack of available equipment, redeployment of staff and increased workload. Furthermore, it was challenging to provide high qualitative care. The nurses missed collegial togetherness and had feelings of uncertainty with a great fear of infecting others. Positive consequences were feelings of being valued and a greater awareness of infection control. CONCLUSION: This study highlighted the importance of unambiguous information and clear delegation of responsibility, and that enough infection control equipment will likely minimize the fear of infecting each other. Being visible and admired for their work was important for the nurses' psychological well-being. Nurses, nursing managers and policymakers in community health care can use these results to develop strategies for future pandemic planning.