| 1. |
- af Sandeberg, Margareta, et al.
(författare)
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Does school attendance during initial cancer treatment in childhood increase the risk of infection?
- 2013
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 60:8, s. 1307-1312
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Tidskriftsartikel (refereegranskat)abstract
- Background The present study aimed to investigate the relationship between school attendance and infection requiring antimicrobial treatment in children undergoing treatment for cancer. Procedure A national cohort of children aged 7-16 years undergoing cancer treatment was assessed during two observation periods of 19 days each, 1 month (n=89) and 2.5 months (n=89) poststart of treatment. Children free from infection at start of each observation period were included. Multivariable logistic regression analyses were performed including factors potentially associated with start of antimicrobial treatment. Results Twenty-seven (30%) children started antimicrobial treatment during the first observation period. Factors associated with an increased risk of starting antimicrobial treatment were diagnosed with sarcoma (OR=24.37, P=0.002) or non-Hodgkin lymphoma (OR=17.57, P=0.025), having neutropenia (OR=5.92, P=0.020) and age less than 13 years (OR=8.54, P=0.014). During the second observation period, when 20 (22%) children started antimicrobial treatment, the probability of starting treatment was increased in children with neutropenia (OR=4.25, P=0.007). There was no statistically significant association between starting treatment for infection and school attendance. Conclusions In this study, children attending school while undergoing cancer treatment did not run a higher risk of starting antimicrobial treatment than children absent from school. However, there is a need for further studies evaluating risk of infections in children with ongoing cancer treatment.
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| 2. |
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| 3. |
- af Sandeberg, Margareta, et al.
(författare)
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Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer
- 2010
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. Methods: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. Results: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. Conclusions: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.
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| 4. |
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| 5. |
- Af Sandeberg, Margareta, et al.
(författare)
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To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R)
- 2017
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Ingår i: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 18:14, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.
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| 6. |
- Pergert, Pernilla, et al.
(författare)
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Confidence and authority through new knowledge : An evaluation of the national educational programme in paediatric oncology nursing in Sweden
- 2016
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Ingår i: Nurse Education Today. - : Elsevier BV. - 0260-6917 .- 1532-2793. ; 38, s. 68-73
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: There is a lack of nurse specialists in many paediatric hospitals in Sweden. This lack of competence is devastating for childhood cancer care because it is a highly specialised area that demands specialist knowledge. Continuing education of nurses is important to develop nursing practice and also to retain them.OBJECTIVES: The aim of this study was to evaluate a Swedish national educational programme in paediatric oncology nursing.SETTINGS AND PARTICIPANTS: The nurses who participated came from all of the six paediatric oncology centres as well as from general paediatric wards. At the time of the evaluation, three groups of registered nurses (n=66) had completed this 2year, part-time educational programme.DESIGN AND METHODS: A study specific questionnaire, including closed and open-ended questions was sent to the 66 nurses and 54 questionnaires were returned. Answers were analysed using descriptive statistics and qualitative content analysis.RESULTS: The results show that almost all the nurses (93%) stayed in paediatric care after the programme. Furthermore, 31% had a position in management or as a consultant nurse after the programme. The vast majority of the nurses (98%) stated that the programme had made them more secure in their work. The nurses were equipped, through education, for paediatric oncology care which included: knowledge generating new knowledge; confidence and authority; national networks and resources. They felt increased confidence in their roles as paediatric oncology nurses as well as authority in their encounters with families and in discussions with co-workers. New networks and resources were appreciated and used in their daily work in paediatric oncology.CONCLUSIONS: The programme was of importance to the career of the individual nurse and also to the quality of care given to families in paediatric oncology. The national educational programme for nurses in Paediatric Oncology Care meets the needs of the highly specialised care.
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| 7. |
- Pergert, Pernilla, et al.
(författare)
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Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments
- 2018
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Ingår i: BMC Medical Ethics. - : BIOMED CENTRAL LTD. - 1472-6939. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. Methods: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from almost never true to almost always true; while the Swedish HECS labels range from never to always. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. Results: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected never and always. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word respect was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients wishes implied always complying with them. Conclusions: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.
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| 8. |
- Sandeberg, Margareta af
(författare)
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Childhood cancer and school
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The school situation is one area identified as being affected during and after treatment for childhood cancer and only studied to a limited extent. A contributing factor to that school absence is not always recommended is uncertainty about whether it increases the risk of infection. Furthermore, there is a lack of valid instruments for the measurement of HRQOL in this population. The overall aim of this thesis was therefore to investigate the school situation and HRQOL of school-aged children (7-16 years) during initial cancer treatment and 4 to 6 years after diagnosis. The thesis includes four studies with a longitudinal design following a cohort of school- aged children (n=126) diagnosed with cancer and starting chemotherapy and/or radiation therapy, response rate 87%. Data during initial cancer treatment were collected one month (T1), 2.5 months (T2) and 5 months (T3) after the start of initial treatment using a study-specific questionnaire to examine school attendance and a standardized instrument for the measurement of HRQOL: the Disabkids chronic generic module (DCGM-37). Study I reports on data quality and psychometric properties of the DCGM-37. Study II followed school attendance and HRQOL over three different weeks during the first 5 months of cancer treatment. Study III included children who were free from infection the day before the start of two observation periods (19 days) during initial cancer treatment. Demographic and clinical data as well as school attendance were analysed regarding the association to the start of antimicrobial treatment. A median of 5 years after diagnosis 63 of the former patients agreed to participate in a follow-up study of school situation and self-rated independence in survivors of childhood cancer (study IV). In study IV data were collected using telephone interviews with open-ended and structured questions. The survivors‟ responses from the structured questions were compared with those from age- matched comparison group drawn from the general population (n=257). The evaluation of data quality and psychometric properties of the DCGM-37 (study I) indicates that it is a feasible instrument for children with cancer though dimensionality was not entirely supported. Furthermore, the results of study II-III revealed that school attendance significantly increased over the first 5 months of initial cancer treatment while self-reported HRQOL diminished, especially among the girls, which did not change throughout the first five months of treatment. Furthermore, HRQOL was positively related to school attendance. Hospital visits and fatigue were the two most common given reasons for school absence. Children who attended school did not appear to develop more infections than children not attending school. The results of study IV, conducted a median of 5 years after diagnosis, showed that despite that 62% of the survivors considered their school situation to be more or less the same as their peers‟ situation, a significant proportion reported difficulties in school because of physical and cognitive limitations. At follow-up, the survivors scored significantly higher on the independence dimension (i.e. on HRQOL) than they did during initial treatment and their scores were significantly higher than the controls. The present findings underscore the importance of psychosocial care and nursing for children undergoing cancer treatment and continued follow-up of survivors after completion of treatment. Furthermore, given the social benefits of school attendance, our results support the encouragement of school attendance during cancer treatment. Because of the relatively short time of the follow-up, it is not possible to draw conclusions about long-term outcome of the school situation for children with cancer.
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