| 1. |
- Nilsson, Stefan, 1972, et al.
(författare)
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Evaluating pictorial support in person-centred care for children (PicPecc) : A protocol for a crossover design study
- 2021
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11:5
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Eriksson, Erik, 1977, et al.
(författare)
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Participation in a Swedish cervical cancer screening program among women with psychiatric diagnoses: a population-based cohort study.
- 2019
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Ingår i: BMC public health. - : Springer Science and Business Media LLC. - 1471-2458. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- In Sweden, organized screening programs have significantly reduced the incidence of cervical cancer. For cancers overall, however, women with psychiatric diagnoses have lower survival rates than other women. This study explores whether women with psychiatric diagnoses participate in cervical cancer screening programs to a lesser extent than women on average, and whether there are disparities between psychiatric diagnostic groups based on grades of severity.Between 2000 and 2010, 65,292 women within screening ages of 23-60 had at least two ICD-10 (International Statistical Classification of Diseases and Related Health Problems - Tenth Revision) codes F20*-F40* registered at visits in primary care or psychiatric care in Region Västra Götaland, Sweden. Participation in the cervical cancer screening program during 2010-2014 was compared with the general female population using logistic regression adjusted for age.Relative risk for participation (RR) for women diagnosed within psychiatric specialist care RR was 0.94 compared with the general population, adjusted for age. RR for diagnoses outside specialist care was 0.99. RR for psychoses (F20*) was 0.81.Women with less-severe psychiatric diagnoses participate in the screening program to the same extent as women overall. Women who have received psychiatric specialist care participate to a lesser extent than women overall. The lowest participation rates were found among women diagnosed with psychoses.
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| 3. |
- Hedén, Lena E, et al.
(författare)
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Children's self-reports of fear and pain levels during needle procedures
- 2020
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Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 7:1, s. 376-382
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Tidskriftsartikel (refereegranskat)abstract
- AimThe objective was to determine the levels of and potential relationships between, procedure‐related fear and pain in children.DesignClinical based cross‐sectional.MethodsNinety children aged between 7–18 years were included consecutively and self‐reported levels of pain and fear on a 0–100 mm visual analogue scales (VAS) when undergoing routine needle insertion into a subcutaneously implanted intravenous port following topical anaesthesia.ResultsThe needle‐related fear level was reported to be as high as the needle‐related pain level (mean VAS: 14 mm and 12 mm, respectively, N = 90). With fear as the dependent variable, age and pain were significantly associated and explained 16% of the variance. With pain as the dependent variable, fear was significantly associated and explained 11% of the variance. A post hoc analysis indicated that younger children reported their fear levels to be higher than their pain levels.
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| 4. |
- Smith, Frida, 1973, et al.
(författare)
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Exploring the meaning, role and experiences of a patient-led social innovation for people affected by cancer: a new collaborative care model complementing traditional cancer rehabilitation in Sweden
- 2021
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Ingår i: BMJ open quality. - : BMJ. - 2399-6641. ; 10:4
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Tidskriftsartikel (refereegranskat)abstract
- Objective Kraftens Hus is the first support centre in Sweden designed by and for people affected by cancer, including patients, family, friends, staff members and local community representatives (collectively 'stakeholders'). The purpose of this study was to explore the meaning, role and experiences of Kraftens Hus stakeholders using a patient and public involved methodology. Methods To understand and map the experiences of visitors to Kraftens Hus, we applied concept mapping (CM), a mixed methods approach where data are collected and analysed in four structured steps designed to capture the diverse perspectives of multiple stakeholders. Qualitative interviews with relevant stakeholders supplemented the CM findings. Results The final concept map contained six clusters of ideas. Within the clusters, there was a recurring theme that cancer-affected people value accessible and long-term psychosocial support (PSS). The intended emotional, social and practical needs identified in a previous design process seem to have been addressed and appreciated by Kraftens Hus visitors. Conclusion Kraftens Hus is an example of a new patient-led social innovation based on a life-event perspective and integration of resources from different sectors in society. By focusing on life, not the disease, the care continuum expands, and long-term PSS is provided alongside cancer treatment. The evaluation confirms that PSS should focus on health and well-being in the broadest sense.
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| 5. |
- Weick, Linn, 1991, et al.
(författare)
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Patient experience of implant loss after immediate breast reconstruction : An interpretative phenomenological analysis
- 2023
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Ingår i: Health Care for Women International. - : Taylor & Francis Group. - 0739-9332 .- 1096-4665. ; 44:1, s. 61-79
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Tidskriftsartikel (refereegranskat)abstract
- Immediate breast reconstruction (IBR) is an integral part of modern breast cancer treatment. Our aim was to investigate patient experience with implant loss after IBR by using interpretative phenomenological analysis (IPA). We conducted semi-structured interviews with eight informants. We analyzed data according to the IPA flexible seven-stage process and four main themes were developed: immediate breast reconstruction as the indisputable choice, a difficult experience, an altered body: redefining normality, and trying to cope. The experience of implant loss appears to affect women for many years and might overshadow some of the benefits of IBR.
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| 6. |
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| 7. |
- Darcy, Laura, 1967-, et al.
(författare)
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The development of the clinical assessment tool "Health and Everyday Functioning in Young Children with Cancer"
- 2020
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Ingår i: Child Care Health and Development. - : John Wiley & Sons. - 0305-1862 .- 1365-2214. ; 46:4, s. 445-456
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer.METHODS: A comprehensive set of ICF-CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF-CY codes.RESULTS: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care."CONCLUSION: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF-CY could be used to guide the delivery of care towards living an everyday life with a long-term illness.
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| 8. |
- 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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| 9. |
- Hedén, Lena E., et al.
(författare)
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Effect of morphine in needle procedures in children with cancer
- 2011
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Ingår i: European Journal of Pain. - : Wiley. - 1090-3801 .- 1532-2149. ; 15:10, s. 1056-1060
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to investigate whether children experience less fear, distress, and/or pain when they receive oral morphine vs. placebo before a needle is inserted in a subcutaneously implanted intravenous port when combined with topical anesthesia. Method: Fifty children 1-18 years of age who were treated in a pediatric oncology and hematology setting were included consecutively when undergoing routine needle insertion into an intravenous port. All children were subjected to one needle insertion following topical anesthetic (EMLA) application in this randomized, triple-blind, placebo-controlled study comparing orally administered morphine (n = 26) 0.25 mg/kg body weight with placebo (n = 24). The patients' fear, distress, and pain were reported by parents, nurses and the children themselves (if >= 7 years of age) on 0-100 mm Visual Analogue Scales. In addition, observational methods were used to measure distress and procedure pain. Results: No differences between the morphine and the placebo group were found with respect to age, weight, height, physical status, sex, weeks from diagnosis, or weeks from latest needle insertion. According to, parents, nurses, and children, oral morphine at a dose of 0.25 mg/kg body weight did not reduce fear, distress or pain compared with placebo. Conclusion: We could not reject the null hypothesis that there is no difference between the oral morphine and placebo groups assuming an effect size of 15 mm on VAS. Therefore it seems that oral morphine at 0.25 mg/kg does not give any additional reduction of fear, distress or pain compared with placebo when combined with topical anesthesia in pediatric patients undergoing subcutaneous port needle insertion, and would not be expected to be of any advantage for similar procedures such as venipuncture and venous cannulation when topical anesthesia is used.
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| 10. |
- Björk, Maria, et al.
(författare)
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Like being covered in a wet and dark blanket : Parents' lived experiences of losing a child to cancer
- 2016
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 25, s. 40-45
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of this study was to illuminate parents' lived experiences of losing a child to cancer. Method: Interviews and a narrative about parents' experiences of losing a child to cancer were gathered from six parents of children whom had participated in a longitudinal study across the child's illness trajectory. The analysis of the data was inspired by van Manen's hermeneutic phenomenological approach. Results: One essential theme emerged: Like being covered in a wet and dark blanket, as well as six related themes: Feeling conflicting emotions, Preparing for the moment of death, Continuing parenting after death, Recollecting and sharing memories, Working through the sorrow and New perspectives in life. Conclusion: There is a need for good palliative care. If not, there is a risk that the parent will perseverate and blame themselves for not being a good parent during the suffering child's last time in life. Meetings with the parents six months and two years after the child's death might facilitate healing through the grief process.
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