Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling.

PURPOSE: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor. METHODS: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants. Qualitative content analysis was used to explore parents' experiences. FINDINGS: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child would survive or not could not be predicted; thus, parents had to endure unpredictability, and to cope with this they chose to focus on positives. Finally, the parents managed family life in the midst of chaos, felt an inadequacy and a perception that the family became a fragmented although close team during hospital stays. They expressed a need for both tangible and emotional support. CONCLUSIONS: When a child needs a stem cell transplant, the parents feel inadequate to their healthy children including the donating child. It is obvious that they experience an uncertain future and struggle to keep the family together amid the chaos. PRACTICE IMPLICATIONS: Considering these results, psychosocial support should be mandatory for parents in connection with pediatric HSCT, to enable a process where parents can prepare for the outcome, whether successful or not.

Morbidity and mortality among children, adolescents, and young adults with cancer over six decades: a Swedish population-based cohort study (the Rebuc study).

Background: Despite progress in managing cancer in children, adolescents, and young adults (CAYAs), persistent complications may impact their quality of life. This study covers the morbidity and mortality, among CAYAs, with the aim to investigate the influence of socioeconomic factors on outcomes. Methods: This retrospective matched cohort study included the entire Swedish population of individuals under 25 with cancer 1958-2021. The population was identified from the Cancer Register, and controls were paired 1:5 based on age, sex, and residence. Multiple registers provided data on morbidity, mortality, and demographics. Findings: This survey covering 63 years, identified 65,173 CAYAs and matched controls, a total of 378,108 individuals (74% females). CAYAs exhibited a 3.04-times higher risk for subsequent cancer (Odds ratio (OR) 95% confidence interval (CI) 2.92-3.17, p < 0.0001), a 1.23-times higher risk for cardiovascular disease (OR 95% CI 1.20-1.26, p < 0.0001), and a 1.41-times higher risk for external affliction (OR 95% CI 1.34-1.49, p < 0.0001). CAYAs had a higher mortality hazard, and after adjusting for socioeconomic factors, males, individuals born outside Europe, and those with greater sick-leave had a higher association with mortality, while education and marriage showed a beneficial association. Interpretation: The Rebuc study, showed an increased risk for serious complications among young cancer patients in Sweden. Patient-specific variables, demographics, and socioeconomic factors influenced mortality. These results underscore the impact of cancer on the health and lifespan of young individuals and the necessity for further research to address socioeconomic disparities in cancer care. Funding: Grants from the Medical Research Council of Southeast Sweden (FORSS), ALF Grants, Region Ostergotland, and The Swedish Childhood Cancer Fund.

Place of death among children from 0 to 17 years of age: A population-based study from Sweden.

AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

[Palliative care in paediatric oncology - a national parental perspective]. / Palliativ vård av barn med cancer.

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.

Perceived professional benefits and their associated factors among Chinese registered nurses caring for women diagnosed with gynecological cancer.

PROPOSE: Registered nurses (RNs) are considered to be a major source of professional supportive care for women diagnosed with gynecological cancer (GC). This study described the level of perceived professional benefits and explored association between perceived professional benefits, sense of coherence (SOC), and coping strategies in Chinese RNs caring for women diagnosed with GC. METHOD: A cross-sectional survey was employed to collect data using the Nurses' Perceived Professional Benefits Questionnaire (NPPBQ), Sense of coherence scale (SOC-13), and Brief Coping Orientation to Problems Experienced (Brief COPE). The questionnaires were administered to 250 RNs in China. The correlations between NPPBQ, SOC-13, and Brief COPE were evaluated with Pearson's correlation coefficient. Multiple regression analysis was performed to assess the relative contribution of each possible factor in explaining variance in the increased NPPBQ. RESULTS: The total score for the NPPBQ was 142.4 (range 33.0-165.0). SOC, dysfunctional coping strategies, and problem-focused coping strategies were recognized as predictors of RNs' perceived professional benefit, while, emotion-focused coping strategies were not significantly associated with RNs' perceived professional benefits. CONCLUSIONS: The findings indicate that RNs who have high levels of SOC, dysfunctional coping strategies, and problem-focused coping strategies tend to experience more perceived professional benefit. These findings propose new perspectives for nursing managers to promote RNs' perceived professional benefit by helping RNs to find meaningfulness when caring for women diagnosed with GC, increasing RNs' communication skills to improve their relationship with patients, and training RNs to use coping strategies effectively.

Everyday life during the childhood cancer trajectory-childhood cancer survivors' descriptions of the role of caring support.

Background: Being diagnosed with cancer in childhood often has a direct impact on the child's opportunities to participate in activities and the child's sense of belonging in different life situations. Experiences of illness in youth affect the lives of these individuals in numerous ways and they need pronounced support to regain their normal life after treatment. Purpose: To illustrate how childhood cancer survivors describe the role of the caring support provided by healthcare professionals at diagnosis and during the cancer trajectory. Methods: A mixed methods approach was applied. Swanson's Theory of Caring was used to deductively analyze the answers in a study-specific questionnaire with Likert scales (1-5). Descriptive and comparative statistics and exploratory factor analyses were performed. Results: Sixty-two former patients, diagnosed with solid tumors/lymphoma in 1983 to 2003 in Sweden, participated. The mean time passed since treatment was 15.7 years. Swanson's caring processes Being with and Doing for were the most prominent loading categorical factor indicators. Higher scores for healthcare professionals being emotionally present (Being with), doing for others what they would do for themselves (Doing for) and being willing to understand the sick child's situation (Knowing) were highlighted by survivors older than 30 years, compared to those younger than 30 years (p = 0.041, p = 0.045, and p = 0.013, respectively). An increased vulnerability regarding their ability to cope with difficulties (Maintain belief) was found among participants who were treated during adolescence, related to schoolchildren (p = 0.048), and among those who had been treated with extra-cranial irradiation in comparison with no extra-cranial irradiation (p = 0.004). The role of having a partner in comparison with being single was underlined among those who felt they had acquired the tools they needed to take care of themselves (Enabling) (p = 0.013). The total explained variance was 63%. Conclusions: A person-centered care approach during treatment for childhood cancer, reflected by a caring model, highlights the role of healthcare professionals being emotionally present, involving children, performing actions, and with an approach that has potential long-term implications. Childhood cancer patients and survivors need not only clinically competent professionals, but professionals who provide caring interactions with compassion.

Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences.

Background: Studies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment. Purpose: This study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care. Methods: A qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis. Results: Four sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment. Conclusion: The study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.

The Local Tumor Microbiome Is Associated with Survival in Late-Stage Colorectal Cancer Patients.

The gut microbiome is associated with survival in colorectal cancer. Single organisms have been identified as markers of poor prognosis. However, in situ imaging of tumors demonstrate a polymicrobial tumor-associated community. To understand the role of these polymicrobial communities in survival, we conducted a nested case-control study in late-stage cancer patients undergoing resection for primary adenocarcinoma. The microbiome of paired tumor and adjacent normal tissue samples was profiled using 16S rRNA sequencing. We found a consistent difference in the microbiome between paired tumor and adjacent tissue, despite strong individual microbial identities. Furthermore, a larger difference between normal and tumor tissue was associated with prognosis: patients with shorter survival had a larger difference between normal and tumor tissue. Within the tumor tissue, we identified a 39-member community statistic associated with survival; for every log2-fold increase in this value, an individual's odds of survival increased by 20% (odds ratio survival 1.20; 95% confidence interval = 1.04 to 1.33). Our results suggest that a polymicrobial tumor-specific microbiome is associated with survival in late-stage colorectal cancer patients. IMPORTANCE Microbiome studies in colorectal cancer (CRC) have primarily focused on the role of single organisms in cancer progression. Recent work has identified specific organisms throughout the intestinal tract, which may affect survival; however, the results are inconsistent. We found differences between the tumor microbiome and the microbiome of the rest of the intestine in patients, and the magnitude of this difference was associated with survival, or, the more like a healthy gut a tumor looked, the better a patient's prognosis. Our results suggest that future microbiome-based interventions to affect survival in CRC will need to target the tumor community.

Nurses' Perceptions of the Impact of a National Educational Program in Pediatric Oncology Nursing: A Cross-Sectional Evaluation.

Background: Specific knowledge is required in pediatric oncology, and specialization of nurses has been identified as a priority. In Sweden, a national program in pediatric oncology nursing has been offered since 2003. The aim of this study was to gain knowledge of nurses' perceptions of the impact of this educational program. Methods: Eighty nurses who had completed the educational program in three cohorts (2012-2019) were invited to participate in this cross-sectional survey. An electronic study-specific questionnaire containing multiple-choice questions was used. Data were analyzed using descriptive statistics and correlation tests. Results: Fifty-nine (74%) nurses completed the survey, of whom 98% responded that they would recommend the program to a large/fairly large extent. At the time of the survey, 15 (25%) participants had left pediatric oncology care. Among the remaining 44, 31 (71%) of the nurses were working bedside, and 13 (42%) of these combined this with a special position (e.g., consultant nurse). The education resulted in career advancement, as the number of nurses with special positions increased following completion of the program, from 20% to 59%. The vast majority stated that the knowledge gained from the education contributed to increased confidence in interactions with the children/families. Discussion: Continuing education of nurses in pediatric oncology has an impact on career opportunities in clinical practice and contributes to nurses' confidence and professional work. However, education is not enough to retain competent nurses. Employers need to be aware of the role of the work environment, aspects of work-life balance and career paths.

Factors associated with posttraumatic growth among spouses of women diagnosed with gynaecological cancer: A cross-sectional study.

AIM: The aim of this study was to explore the factors that are associated with posttraumatic growth among spouses of women diagnosed with gynaecological cancer. DESIGN: A cross-sectional descriptive study. METHODS: A convenience sample of 312 spouses of women diagnosed with gynaecological cancer was recruited from two comprehensive hospitals in China, from March 2018 to March 2020. Demographic characteristics, cancer-related characteristics, posttraumatic growth, perceived social support and coping were assessed using self-reported questionnaires. Descriptive statistics and multiple linear regression analysis were performed. The methods were guided by the STROBE checklist. RESULTS: The mean score of posttraumatic growth was 46.7 (standard deviation = 16.7). The associated factors of posttraumatic growth were spouses' age, perceived social support, problem-focused coping, dysfunctional coping (e.g. denial) and cancer treatment received by partners, which accounted for 34% of total posttraumatic growth score. PATIENT OR PUBLIC CONTRIBUTION: All participants contributed to the conducting of this study by completing self-reported questionnaires.

Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians.

OBJECTIVE: This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC). METHODS: A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated. RESULTS: The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility. CONCLUSIONS: Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.

The contralateral hip in slipped capital femoral epiphysis: Is there an easy-to-use algorithm to support a decision for prophylactic fixation?

Purpose: To identify a specific factor that can support the decision for prophylactic fixation in unilateral slipped capital femoral epiphysis. Methods: This retrospective cohort study included a total national population of 379 children diagnosed with slipped capital femoral epiphysis from 2007 to 2013. Regression analysis used information on slip severity, clinical classification of the index hip, age, sex, age-adjusted body mass index, the difference in epiphyseal-diaphyseal angle, and comorbidity to identify any risk factor for the subsequent development of a slip in the contralateral hip. Four observers evaluated the triradiate cartilage following the modified Oxford bone score grade. The occurrence of later development of a contralateral slip in different stage of physeal closure was used to analyze the sensitivity and specificity for this method. Results: This study's only predictor for a subsequent contralateral slip was chronological age. At age 13 years or older, 1/15 in girls and 3/65 in boys suffered from a slip in the contralateral hip. Thus, when using age <13 years as a test for deciding when to do prophylactic fixation, the sensitivity would be 88% and specificity 51% for preventing contralateral slip. However, the correlation between the four different observers was too low to be considered useful when assessing the triradiate cartilage for skeletal maturity. Conclusion: We would advocate a prophylactic fixation for children <13 years diagnosed with a unilateral slipped capital femoral epiphysis as an easy-to-use algorithm. Level of evidence: level II.

Experience of learning from everyday work in daily safety huddles-a multi-method study.

BACKGROUND: To reduce patient harm, healthcare has focused on improvement based on learning from errors and adverse events (Safety-I). Daily huddles with staff are used to support incident reporting and learning in healthcare. It is proposed that learning for improvement should also be based on situations where work goes well (Safety-II); daily safety huddles should also reflect this approach. A Safety-II-inspired model for safety huddles was developed and implemented at the Neonatal Care Unit at a regional hospital in Sweden. This study followed the implementation with the research questions: Do patient safety huddles with a focus on Safety-II affect the results of measurements of the patient safety culture? What are the experiences of these huddles amongst staff? What experiences of everyday work arise in the patient safety huddles? METHODS: A multi-method approach was used. The quantitative part consisted of a questionnaire (151 items), submitted on four different occasions, and analysed using Mann Whitney U-test and Kruskal Wallis ANOVA-test. The qualitative data were analysed using thematic content analyses of interviews with staff (n = 14), as well as answers to open questions in the questionnaires. RESULTS: There were 151 individual responses to the questionnaires. The response rates were 44% to 59%. For most comparisons, there were no differences. There were minor changes in patient safety culture measurements. A lower rating was found in December 2020, compared to October 2019 (p < 0.05), regarding whether the employees pointed out when something was about to go wrong. The interviews revealed that, even though most respondents were generally positive towards the huddles (supporting factors), there were problems (hindering factors) in introducing Safety-II concepts in daily safety huddles. There was a challenge to understanding and describing things that go well. CONCLUSIONS: For patient safety huddles aimed at exploring everyday work to be experienced as a base for learning, including both negative and positive events (Safety-II); there is a need for an open and permissive climate, that all professions participate and stable conditions in management. Support from managers and knowledge of the underpinning Safety-II theories of those who lead the huddles, may also be of importance.

Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling.

PURPOSE: When healthy children/adolescents are potential stem cell donors to a sibling, ethical questions arise due to reduced autonomy and dependency on their family. This study aimed to explore the experiences of children/adolescents in Sweden who donated stem cells to a severely ill sibling. METHOD: Semi-structured interviews were conducted with thirteen donors, aged 6-17 years at the time of the donation, all with surviving siblings. The interviews were transcribed verbatim and analysed using qualitative content analysis. RESULT: The main category in this study was The presumed 'choice' when a sibling is ill. The experience included being Proud without an actual choice, highlights that the donors were proud to contribute, and perceptions of a request without a choice. Focusing on the ill sibling and the outcomes reveals that they were worried and protected the sibling, and downplayed the importance of their own effort. They experienced a Need ofsupport and information, which derived from receiving information without communication about what they really needed to know, but also the importance of support through play and talk. CONCLUSION: The donation involves the young donor in the care, implying an opportunity to bring the family back together. They have no real choice, when their sibling is ill and the lack of information about possible alternatives indicate that there was no option to decline. There is also a need to focus on the experiences of young donors whose siblings died after the transplantation.

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach.

BACKGROUND: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. OBJECTIVE: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. METHODS: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. RESULTS: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non-clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. CONCLUSIONS: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

Child health professionals' experiences of the introduction and successful implementation of rotavirus vaccination in Sweden.

AIM: To explore child health professionals' experiences of the early implementation of the rotavirus vaccination in the two regions that first introduced this vaccination in Sweden. METHODS: A descriptive and repeated cross-sectional study based on a digital study-specific questionnaire with a baseline in 2014 and with a 2-year follow-up in 2016. The study population consisted of nurses and doctors working in child health centres in the health care regions of Stockholm and Jönköping. RESULTS: In Stockholm, a larger proportion of the respondents (n = 355) had concerns in 2014, in comparison with the respondents in Jönköping (n = 101), mostly about the vaccination being a new and time-consuming task (60% versus 23%). In 2016, the overall attitude to vaccination was more positive in both regions and the levels of concern about increased workload were reduced (Stockholm, n = 519, 39%, versus Jönköping, n = 96, 10%). Challenges before and after the introduction in both regions were particularly related to how to give information about the vaccine's potential increased risk of intussusception. CONCLUSION: The gap between respondents' knowledge, attitudes and concerns pre- and post-vaccination introduction was larger in Stockholm compared to Jönköping. In both regions, overall, the implementation of the rotavirus vaccination was perceived as being easier than expected.

Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study.

INTRODUCTION: This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison. METHODS AND ANALYSIS: Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals. TRIAL REGISTRATION: ClinicalTrials.gov; NCT04433650.

Healthcare professionals' experiences of being observed regarding hygiene routines: the Hawthorne effect in vascular surgery.

BACKGROUND: The Hawthorne Effect is the change in behaviour by subjects due to their awareness of being observed and is evident in both research and clinical settings as a result of various forms of observation. When the Hawthorne effect exists, it is short-lived, and likely leads to increased productivity, compliance, or adherence to standard protocols. This study is a qualitative component of an ongoing multicentre study, examining the role of Incisional Negative Pressure Wound Therapy after vascular surgery (INVIPS Trial). Here we examine the factors that influence hygiene and the role of the Hawthorne effect on the adherence of healthcare professionals to standard hygiene precautions. METHODS: This is a qualitative interview study, investigating how healthcare professionals perceive the observation regarding hygiene routines and their compliance with them. Seven semi-structured focus group interviews were conducted, each interview included a different staff category and one individual interview with a nurse from the Department for Communicable Disease Control. Additionally, a structured questionnaire interview was performed with environmental services staff. The results were analysed based on the inductive qualitative content analysis approach. RESULTS: The analysis revealed four themes and 12 subthemes. Communication and hindering hierarchy were found to be crucial. Healthcare professionals sought more personal and direct feedback. All participants believed that there were routines that should be adhered to but did not know where to find information on them. Staff in the operating theatre were most meticulous in adhering to standard hygiene precautions. The need to give observers a clear mandate and support their work was identified. The staff had different opinions concerning the patient's awareness of the importance of hygiene following surgery. The INVIPS Trial had mediated the Hawthorne effect. CONCLUSION: The results of this study indicate that the themes identified, encompassing communication, behaviour, rules and routines, and work environment, influence the adherence of healthcare professionals to standard precautions to a considerable extent of which many factors could be mediated by a Hawthorne effect. It is important that managers within the healthcare system put into place an improved and sustainable hygiene care to reduce the rate of surgical site infections after vascular surgery.

Post-traumatic growth and its influencing factors among Chinese women diagnosed with gynecological cancer: A cross-sectional study.

PURPOSE: The experience of cancer could lead to positive psychological changes following the struggle with diagnosis and treatment. Understanding post-traumatic growth and its influencing factors in women affected by gynecological cancer is essential to enhance their possibility of achieving positive changes. The purpose of this study was to describe the post-traumatic growth level and explore the influencing factors of post-traumatic growth in Chinese women diagnosed with gynecological cancer. METHOD: A cross-sectional survey with a convenience sampling method was employed to collect data using the Post-traumatic Growth Inventory (PTGI), Distress Disclosure Index (DDI), Medical Coping Modes Questionnaire (MCMQ), and Multidimensional Scale of Perceived Social Support (MSPSS). The questionnaires were administered to 344 participants recruited from two hospitals in Hefei City, the capital of Anhui Province in China, between March 2018 and March 2019. All statistical analyses were performed using nonparametric tests. The Mann-Whitney U Test was used to distinguish the intergroup differences. Correlations were evaluated with Spearman rank correlation coefficients. RESULTS: Total score for PTGI was 56.5 (range 48.0-68.0). The subscale with the highest centesimal score in the PTGI was appreciation of life and the lowest was spiritual change. The top five items with the highest scores of PTGI belonged to appreciating life, personal strength, and relating to others. Self-disclosure, confrontation, avoidance, acceptance-resignation, perceived social support, education level, cancer type and the place they lived had significant influence on post-traumatic growth. CONCLUSIONS: The findings indicate that women who have high levels of perceived social support, confrontation, avoidance, self-disclosure and education level tend to experience more post-traumatic growth, while, conversely, high levels of acceptance-resignation have a negative influence on promoting post-traumatic growth. These meaningful findings propose new perspectives for promoting post-traumatic growth in Chinese women diagnosed with gynecological cancer.

Childhood Cancer Survivors: Self-Reported Quality of Life during and after the Cancer Trajectory.

OBJECTIVE: This cross-sectional study aimed to present how the unique cancer experience in childhood influences young adults' quality of life (QOL). METHODS: Qualitative and quantitative methods were used to code and analyze a study-specific questionnaire (133 items). These data are presented in accordance with a conceptual QOL/health-related QOL model. RESULTS: The participants included 34 women and 28 men (n = 62) diagnosed with solid tumors/lymphoma in the period 1983-2003, who had been treated at the same childhood cancer center in Sweden. The current mean age was 28.7 years (range: 18-45, standard deviation [SD]: 6.3, median value: 28.5), the mean age at diagnosis was 12.9 years (range: 8-17, SD: 2.3, median value: 13), and the mean time elapsed since treatment was 15.7 years (range: 4-28, SD: 2.4, median value: 15). The response rate was 65%. Higher levels of psychological maturity were reported by women versus men (P = 0.01) and by survivors diagnosed with cancer during adolescence versus school age (P = 0.04). Male participants reported lower levels of physical limitations (P = 0.03) and emotional distress when being of treatment and in contact with health care services (P = 0.04). The strongest factor influencing QOL during therapy was parental support (97%), while the strongest factors after therapy were to live a life similar to peers (82%) and to be satisfied with one's life situation (81%). During treatment, limitations influencing QOL were related to lack of school support (2%), and after treatment, to deteriorated relationships with siblings (5%). CONCLUSIONS: Life-threatening diseases at young ages have long-term psychosocial effects with ambiguous results at multiple levels. To capture these experiences, we recommend clinical studies that are based on conceptual clarifying frameworks and adopt a quantitative and qualitative research approach.