| 1. |
- Adolfsson, Karin, et al.
(författare)
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Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians
- 2022
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 31:6
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Stenmarker, Emelie, et al.
(författare)
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Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden.
- 2018
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Ingår i: Journal of patient-reported outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 2:1
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Tidskriftsartikel (refereegranskat)abstract
- Malignant disorders in childhood are life-threatening conditions, and issues regarding the children's health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study was to explore HRQOL in children with cancer in two countries, Argentina and Sweden, which have different cultural contexts. The specific aims were: to determine HRQOL by gender, age, diagnosis, treatment modality, time since diagnosis, and parental education/employment across cultures. Further aims were to assess the child/parent relationship in HRQOL and the influence of demographic variables in psychosocial and physical HRQOL in each country.A cross-sectional study was performed in 2014, including 58 children (24 females, 34 males) and 62 parents/guardians. The instrument, the Pediatric Quality of Life Inventory™ (PedsQL™, generic, cancer and fatigue modules), and medical records were used. The response rate was 97%.The mean age of the children was 8.67years (SD 5.1, range 2-18years) and the mean time on treatment was 10.7months (SD 8.7, range 1-30months). The most common diagnosis was leukaemia (57%). In Argentina, in comparison with Sweden, a higher estimation of generic HRQOL was reported among adolescents (p=0.022) and more cancer-related problems among school-age children (p<0.0001). Children and parents in both countries confirmed the major problem with fatigue and multimodality therapy regimes, but lower levels of fatigue were reported in Argentina. Adolescents and children with solid tumours appeared as vulnerable groups. In Sweden, children whose mothers had post-secondary education reported less cancer-related problems (p=0.031). Good relationships were found between child/parent reports in Argentina regarding the fatigue module (p=0.034) and physical subscale (p=0.014), and in Sweden regarding generic health (p=0.004), including psychosocial (p=0.006) and physical subscales (p=0.042), and cancer (p=0.001), and fatigue (p<0.0001) modules. In Sweden, psychosocial health (OR 7.5; p=0.007) and physical health (OR 6.2; p=0.011) were positively influenced by being a school-age child.Fatigue is as a major problem across cultures. Still, being in school facilitates recovery. Good relationships in psychosocial HRQOL highlight professional challenges regarding severe issues and open communication, and the need of performing comparative studies of HRQOL of children with cancer from different cultural backgrounds.
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| 3. |
- Björnsson, Bergthor, et al.
(författare)
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Digital twins to personalize medicine
- 2020
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Ingår i: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 12:1
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Forskningsöversikt (refereegranskat)abstract
- Personalized medicine requires the integration and processing of vast amounts of data. Here, we propose a solution to this challenge that is based on constructing Digital Twins. These are high-resolution models of individual patients that are computationally treated with thousands of drugs to find the drug that is optimal for the patient.
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| 4. |
- Bohnstedt, C., et al.
(författare)
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Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents & apos; experiences
- 2023
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Ingår i: Frontiers in Rehabilitation Sciences. - : FRONTIERS MEDIA SA. - 2673-6861. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundStudies 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.PurposeThis 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.MethodsA 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.ResultsFour 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.ConclusionThe 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.
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| 5. |
- Debelius, J. W., et al.
(författare)
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The Local Tumor Microbiome Is Associated with Survival in Late-Stage Colorectal Cancer Patients
- 2023
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Ingår i: Microbiology Spectrum. - : AMER SOC MICROBIOLOGY. - 2165-0497. ; 11:3
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Tidskriftsartikel (refereegranskat)abstract
- 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 log(2)-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.
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| 6. |
- Gawel, Danuta, et al.
(författare)
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A validated single-cell-based strategy to identify diagnostic and therapeutic targets in complex diseases
- 2019
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Ingår i: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Background: Genomic medicine has paved the way for identifying biomarkers and therapeutically actionable targets for complex diseases, but is complicated by the involvement of thousands of variably expressed genes across multiple cell types. Single-cell RNA-sequencing study (scRNA-seq) allows the characterization of such complex changes in whole organs. Methods: The study is based on applying network tools to organize and analyze scRNA-seq data from a mouse model of arthritis and human rheumatoid arthritis, in order to find diagnostic biomarkers and therapeutic targets. Diagnostic validation studies were performed using expression profiling data and potential protein biomarkers from prospective clinical studies of 13 diseases. A candidate drug was examined by a treatment study of a mouse model of arthritis, using phenotypic, immunohistochemical, and cellular analyses as read-outs. Results: We performed the first systematic analysis of pathways, potential biomarkers, and drug targets in scRNA-seq data from a complex disease, starting with inflamed joints and lymph nodes from a mouse model of arthritis. We found the involvement of hundreds of pathways, biomarkers, and drug targets that differed greatly between cell types. Analyses of scRNA-seq and GWAS data from human rheumatoid arthritis (RA) supported a similar dispersion of pathogenic mechanisms in different cell types. Thus, systems-level approaches to prioritize biomarkers and drugs are needed. Here, we present a prioritization strategy that is based on constructing network models of disease-associated cell types and interactions using scRNA-seq data from our mouse model of arthritis, as well as human RA, which we term multicellular disease models (MCDMs). We find that the network centrality of MCDM cell types correlates with the enrichment of genes harboring genetic variants associated with RA and thus could potentially be used to prioritize cell types and genes for diagnostics and therapeutics. We validated this hypothesis in a large-scale study of patients with 13 different autoimmune, allergic, infectious, malignant, endocrine, metabolic, and cardiovascular diseases, as well as a therapeutic study of the mouse arthritis model. Conclusions: Overall, our results support that our strategy has the potential to help prioritize diagnostic and therapeutic targets in human disease.
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| 7. |
- Herngren, Bengt, et al.
(författare)
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Outcomes after slipped capital femoral epiphysis: a population-based study with three-year follow-up
- 2018
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Ingår i: Journal of Childrens Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 12:5, s. 434-443
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To evaluate outcomes three years after treatment for slipped capital femoral epiphysis (SCFE): development of avascular necrosis (AVN), subsequent surgery, hip function and the contralateral hip. Methods This prospective cohort study included a total national population of 379 children treated for SCFE between 2007 and 2013. A total of 449 hips treated for SCFE and 151 hips treated with a prophylactic fixation were identified. The Barnhoft questionnaire, a valid patient-reported outcome measure (PROM), was used. Results In all, 90 hips had a severe slip, 61 of these were clinically unstable. AVN developed in 25 of the 449 hips. Six of 15 hips treated with capital realignment developed AVN. A peri-implant femur fracture occurred in three slipped hips and in two prophylactically pinned hips. In three of these five hips technical difficulties during surgery was identified. In 43 of 201 hips scheduled for regular follow-up a subsequent SCFE developed in the contralateral hip. Implant extraction after physeal closure was performed in 156 of 449 hips treated for SCFE and in 51 of 151 prophylactically fixed hips. Children with impaired hip function could be identified using the Barnhoft questionnaire. Conclusion Fixation in situ is justified to remain as the primary treatment of choice in SCFE. Overweight is more common in children with SCFE than in the average population. Prophylactic fixation is a safe procedure when performed using a correct technique. The number of patients who developed AVN after capital realignment is of concern. We recommend rigorous follow-up of both hips, including PROM evaluation, until physeal closure.
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| 8. |
- Lindell, Mikael, et al.
(författare)
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The contralateral hip in slipped capital femoral epiphysis: Is there an easy-to-use algorithm to support a decision for prophylactic fixation?
- 2022
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Ingår i: Journal of Childrens Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 16:4, s. 297-305
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Nilsson, Stefan, 1972, et al.
(författare)
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Place of death among children from 0 to 17 years of age : A population-based study from Sweden
- 2024
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Ingår i: Acta Paediatrica. - : WILEY. - 0803-5253 .- 1651-2227.
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Rezk, Francis, et al.
(författare)
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Healthcare professionals' experiences of being observed regarding hygiene routines: the Hawthorne effect in vascular surgery
- 2021
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Ingår i: BMC Infectious Diseases. - : Springer Science and Business Media LLC. - 1471-2334. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe 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.MethodsThis 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.ResultsThe 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.ConclusionThe 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.
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| 11. |
- Rinaldo, C., et al.
(författare)
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Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling
- 2022
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 58
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Tidskriftsartikel (refereegranskat)abstract
- 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 of support 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.
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| 12. |
- Sandeberg, M. A., et al.
(författare)
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Nurses' Perceptions of the Impact of a National Educational Program in Pediatric Oncology Nursing: A Cross-Sectional Evaluation
- 2023
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Ingår i: Journal of Pediatric Hematology-Oncology Nursing. - : Sage Publications. - 2752-7530 .- 2752-7549. ; 40:3, s. 178-87
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 13. |
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| 14. |
- Schröder Håkansson, Anna, 1964, et al.
(författare)
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Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology
- 2020
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 109:5, s. 1040-1048
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Tidskriftsartikel (refereegranskat)abstract
- Aim To explore Swedish healthcare professionals' (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions. Methods In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method. Results The participants' main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants' struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust. The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). Conclusion Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP-related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long-term risk of developing professional moral distress.
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| 15. |
- Stenmarker, Margaretha, 1960, et al.
(författare)
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Being a messenger of life-threatening conditions: experiences of pediatric oncologists.
- 2010
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Ingår i: Pediatric blood & cancer. - : Wiley. - 1545-5017 .- 1545-5009. ; 55:3, s. 478-84
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Tidskriftsartikel (refereegranskat)abstract
- A nationwide population-based study with questionnaires involving 90 pediatric oncologists was performed in Sweden in 2006/2007. On the basis of this quantitative study, a qualitative study was performed. The aim of this qualitative study was to focus on the main concern of these physicians facing malignant disorders, psychosocial issues, and existential provocation. Furthermore, the strategies for handling these challenges were also studied.
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| 16. |
- Stenmarker, Margaretha, 1960
(författare)
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Being a Pediatric Oncologist: A Nationwide Study of Personal Resources and Difficulties When Working with Children with Cancer
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Being a pediatric oncologist involves facing medical challenges, life-threatening conditions, psychosocial issues and existential provocation. The first nationwide study of 90 Swedish pediatric oncologists focuses on the psychological aspects for physicians meeting children with cancer, as well as physician-related factors promoting health and well-being. The experiences of the study population cover a period of more than 40 years. The thesis aims to study the everyday life of pediatric oncologists, i.e. their motivating factors, stress-resilience capacity, life satisfaction and work-related difficulties, in relation to relevant background characteristics, length of experience (more/less than 10 years) and type of medical center (academic/non-academic). The study design was cross-sectional and used both quantitative and qualitative methods. Paper I presents the development of a study-specific questionnaire. Papers II and III present the background characteristics for 89/90 physicians, working at academic medical centers with 25-90 new cancer patients every year and non-academic centers with 3-20 new patients. The response rate was 88/89% in the target group. The study-specific questionnaire and five psychometric instruments measuring coping resources, sense of coherence, life satisfaction, emotional distress and personality were used. Optimal pediatric oncology included several colleagues and a multi-professional healthcare team and the work was regarded as very stimulating for personal development. Time pressure was a reality for every participant, as were a wide range of coping resources, high sense of coherence, average overall life satisfaction and low levels of emotional distress. More experienced pediatricians reported a higher impact by motivating factors, past overall life satisfaction and a lower degree of somatization. Future overall life satisfaction was higher among physicians who met more pediatric oncology patients. Their personality traits showed low levels of negative affectivity and high levels of positive affectivity (Hedonic Capacity). Male pediatricians were more satisfied with their present lives and physicians working at academic medical centers were more confident about the future. One in ten needed professional help to deal with work-related psychological problems. Personality traits (Hedonic Capacity) and low levels of depression contributed to every aspect of overall life satisfaction. Work-related aspects influenced present and future life satisfaction. Paper IV, a grounded theory analysis of in-depth interviews with 10 experienced physicians, focused on their main concern, the demanding role of breaking bad news. Strategies for handling the challenges were related to seeking knowledge and support, building a close relationship with the patients and families, having reflected on central life issues but avoiding identification. Practical implications and physician-related recommendations are presented. The overall picture of this study group reveals an optimistic attitude and stable emotional status, pointing to a high level of satisfaction. The impediments are particularly related to time pressure, risk of emotional distress, having less experience and the need for colleagues, plus a multi-professional team. The role of messenger requires strategies to handle the challenges. Knowledge acquired from the present study is expected to be useful in improving the physician-patient relationship, thereby helping to retain experienced physicians and recruit new specialists in pediatric oncology.
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| 17. |
- Stenmarker, Margaretha, 1960, et al.
(författare)
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Child health professionals' experiences of the introduction and successful implementation of rotavirus vaccination in Sweden
- 2021
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 110:10, s. 2833-2841
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Tidskriftsartikel (refereegranskat)abstract
- 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 Jonkoping. Results In Stockholm, a larger proportion of the respondents (n = 355) had concerns in 2014, in comparison with the respondents in Jonkoping (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 Jonkoping, 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 Jonkoping. In both regions, overall, the implementation of the rotavirus vaccination was perceived as being easier than expected.
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| 18. |
- Stenmarker, Margaretha, 1960, et al.
(författare)
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Childhood Cancer Survivors: Self-Reported Quality of Life during and after the Cancer Trajectory
- 2020
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Ingår i: Asia-Pacific Journal of Oncology Nursing. - : Elsevier BV. - 2347-5625 .- 2349-6673. ; 7:4, s. 336-345
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 19. |
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| 20. |
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| 21. |
- Wahl, Karina, et al.
(författare)
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Experience of learning from everyday work in daily safety huddles-a multi-method study.
- 2022
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Ingår i: BMC health services research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- 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?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.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.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.
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| 22. |
- Wiljén, Angelica, et al.
(författare)
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The development of a mHealth tool for children with long-term illness to enable person-centred communication : a co-design approach
- 2021
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Ingår i: Quality of Life Research. - : SPRINGER. - 0962-9343 .- 1573-2649. ; 30:SUPPL 1, 1, SI
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 23. |
- Zhou, Lihua, et al.
(författare)
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Factors associated with posttraumatic growth among spouses of women diagnosed with gynaecological cancer: A cross-sectional study
- 2023
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Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 10:2, s. 630-640
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 24. |
- Zhou, Lihua, et al.
(författare)
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Post-traumatic growth and its influencing factors among Chinese women diagnosed with gynecological cancer: A cross-sectional study.
- 2021
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 51
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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