| 1. |
- Kassa, Ann-Marie, 1955-
(författare)
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Living with VACTERL association : From the perspectives of children, adolescents and their parents
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- VACTERL association is a rare and complex congenital condition often requiring repeated surgery and entailing various physical sequelae. Knowledge is scarce regarding experiences of the health condition and health care, need of support at school, health-related quality of life (HRQoL), and psychological well-being in children, adolescents and their parents.This thesis aims to investigate various aspects of living with VACTERL association, from the perspectives of children, adolescents and their parents.Ten children aged five to eight years were interviewed using the computer-assisted interview technique In My Shoes (Study I). They expressed awareness of their health history and felt proud but also different due to physical dysfunction. While happy to meet familiar staff in the hospital they voiced worries about medical procedures.The nineteen parents interviewed described crisis reactions on the discovery of malformations in their child (Study II). Parental involvement in care was reported from the initial hospital admission until taking responsibility for treatments at home. Eventually the health condition became integrated in everyday life. Insufficient emotional and limited medical support were reported. Various levels of professionalism among healthcare professionals and discrepancies concerning knowledge and experience between the tertiary and local hospitals were described.In ten evaluated pre-school children (Study III), intelligence measured by Wechsler-scales was within the normal range. Eight children had attention difficulties and two were later diagnosed with attention deficit hyperactivity disorder (ADHD). All children had physical dysfunctions affecting their nutrition, bowel or bladder functions. All needed extra support and adjustments at school.Forty children and adolescents responded to validated questionnaires of DISABKIDS and Beck inventories (Study IV). The HRQoL was comparable to European children with chronic conditions. Their psychological well-being was similar to that of Swedish school children and significantly better than that of a clinical sample. Self-reported anxiety and depression in 38 mothers and 33 fathers were comparable to non-clinical samples.In conclusion, regular follow-up by multi-professional team with continuity is crucial to optimise the physical function in children with VACTERL, to identify those in need of extra support at school and to detect reduced psychological well-being in children and parents. Fear of medical procedures may be reduced by carefully providing information and individual care strategies. For the parents psychological processing, support from medical experts and peers is essential to achieve self-confidence and adaptation. Transfer of knowledge and information between multi-professional teams at the local and tertiary hospitals could be improved by the use of video sessions.
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| 2. |
- Kassa, Ann-Marie, 1955-, et al.
(författare)
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Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study
- 2022
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Ingår i: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 17:5
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Tidskriftsartikel (refereegranskat)abstract
- Current knowledge of transitional care from the perspective of individuals with congenital malformations is scarce. Their viewpoints are required for the development of follow-up programs and transitional care corresponding to patients' needs. The study aimed to describe expectations, concerns, and experiences in conjunction with transfer to adult health care among adolescents, young adults, and adults with VACTERL association, (i.e. vertebral defects, anorectal malformations (ARM), cardiac defects (CHD), esophageal atresia (EA), renal, and limb abnormalities). Semi-structured telephone interviews were performed and analyzed with qualitative content analysis. Of 47 invited individuals, 22 participated (12 males and 10 females). An overarching theme emerged: Leaving the safe nest of pediatric health care for an unfamiliar and uncertain follow up yet growing in responsibility and appreciating the adult health care. The participants described expectations of qualified adult health care but also concerns about the process and transfer to an unfamiliar setting. Individuals who were transferred described implemented or absence of preparations. Positive and negative experiences of adult health care were recounted including being treated as adults. The informants described increasing involvement in health care but were still supported by their parents. Ongoing follow up of health conditions was recounted but also uncertainty around the continuation, missing follow up and limited knowledge of how to contact health care. The participants recommended information ahead of transfer and expressed wishes for continued health care with regular follow up and accessibility to a contact person. Based on the participants' perspective, a transitional plan is required including early information about transfer and follow up to prepare the adolescents and reduce uncertainty concerning future health care. Meetings with the pediatric and adult team together with the patient and the parents are essential before transfer. Follow up should be centralized to centers with multi-professional teams well-experienced with the condition. Further studies are warranted to evaluate the transition process for adolescents and young adults with complex congenital health conditions.
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| 3. |
- Almblad, Ann-Charlotte, 1965-, et al.
(författare)
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From skepticism to assurance and control : Implementation of a patient safety system at a pediatric hospital in Sweden
- 2018
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:11
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Tidskriftsartikel (refereegranskat)abstract
- Background: The use of evidence-based practice among healthcare professionals directly correlates to better outcomes for patients and higher professional satisfaction. Translating knowledge in practice and mobilizing evidence-based clinical care remains a continuing challenge in healthcare systems across the world.Purpose: To describe experiences from the implementation of an Early Detection and Treatment Program for Children (EDT-C) among health care professionals at a pediatric hospital in Sweden.Design and Methods: Sixteen individual interviews were conducted with physicians, nurses and nurse assistants, which of five were instructors. Data were analyzed with qualitative content analysis.Results: An overarching theme was created: From uncertainty and skepticism towards assurance and control. The theme was based on the content of eight categories: An innovation suitable for clinical practice, Differing conditions for change, Lack of organizational slack, Complex situations, A pragmatic implementation strategy, Delegated responsibility, Experiences of control and Successful implementation.Conclusions: Successful implementation was achieved when initial skepticism among staff was changed into acceptance and using EDT-C had become routine in their daily work. Inter-professional education including material from authentic patient cases promotes knowledge about different professions and can strengthen teamwork. EDT-C with evidenced-based material adapted to the context can give healthcare professionals a structured and objective tool with which to assess and treat patients, giving them a sense of control and assurance.
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| 4. |
- Almblad, Ann-Charlotte, 1965-, et al.
(författare)
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Implementation of Pediatric Early Warning Score : Adherence to Guidelines and Influence of Context
- 2018
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Ingår i: Journal of Pediatric Nursing. - : Elsevier BV. - 0882-5963 .- 1532-8449. ; 38, s. 33-39
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To describe data of Pediatric Early Warning Score (PEWS) registrations and to evaluate the implementation of PEWS by examining adherence to clinical guidelines based on measured PEWS, and to relate findings to work context.DESIGN AND METHODS: PEWS, as a part of a concept called Early Detection and Treatment-Children (EDT-C) was implemented at three wards at a Children's Hospital in Sweden. Data were collected from the Electronic Patient Record (EPR) retrospectively to assess adherence to guidelines. The Alberta Context Tool (ACT) was used to assess work context among healthcare professionals (n=110) before implementation of EDT-C.RESULTS: The majority of PEWS registrations in EPR were low whereas 10% were moderate to high. Adherences to ward-specific guidelines at admission and for saturation in respiratory distress were high whereas adherence to pain assessment was low. There were significant differences in documented recommended actions between wards. Some differences in leadership and evaluation between wards were identified.CONCLUSIONS: Evaluation of PEWS implementation indicated frequent use of the tool despite most scores being low. High scores (5-9) occurred 28 times, which may indicate that patients with a high risk of clinical deterioration were identified. Documentation of the consequent recommended actions was however incomplete and there was a large variation in adherence to guidelines. Contextual factors may have an impact on adherence.PRACTICE IMPLICATIONS: EDT-C can lead to increased knowledge about early detection of deterioration, strengthen nurses as professionals, optimize treatment and teamwork and thereby increase patient safety for children treated in hospitals.
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| 5. |
- Almblad, Ann-Charlotte, 1965-, et al.
(författare)
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Increased intensive care admission rate after introduction of Early Detection and Treatment program for Children and the establishment of a pediatric intensive care unit at a tertiary hospital in Sweden
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To evaluate the introduction of an Early Detection and Treatment program- Children (EDT-C) including a paediatric early warning score (PEWS) in relation to admission and length of stay at intensive care unit (ICU). Design: Before-after study utilizing data from the Electronic Patient Record (EPR) system, comparing outcomes over a total time period of 60 months between April 2010 and September 2015. Setting: A Swedish tertiary hospital. Patients: A total of 16,283 paediatric patients were included over the study period. Interventions: EDT-C including PEWS Measurements and Main Results: The following variables were extracted from the EPR data: 1) Admissions to paediatric wards 2) Length of stay at paediatric wards 3) Admissions to intensive care units 4) Length of stay at intensive care unit 5) Diagnosis. Intensive care unit admission increased from 5.0% (440/8746) before to 10.2 % (772/7537) after the introduction of the EDT-C (p<0.01). Mean treatment time at ICU did not change (41.0 vs 48.3 hours, p=0.23). Conclusion: The introduction of EDT-C including PEWS, in conjunction with the establishment of a paediatric intensive care unit at the hospital, resulted in an increased intensive care admittance rate among paediatric in-patients.
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| 6. |
- Cederblad, Maria, 1968-, et al.
(författare)
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Infrequent enuresis, the uninvestigated majority : comparisons between children with enuresis of varying severity.
- 2015
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Ingår i: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 11:1, s. 24.e1-24.e6
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The main objective was to compare children with frequent enuresis (FE) and children with infrequent enuresis (IE) using anamnestic data and variables related to bladder and kidney function. A secondary aim was to look at the group of children who wet their beds every single night, a phenomenon we chose to call constant enuresis (CE).SUBJECTS AND METHODS: The parents recorded the number of wet and dry nights for a period of 14 days, and measured the voided volumes as well as nocturnal urine production for 48 h. History data relevant to bladder and bowel function was also recorded.RESULTS: The children could be grouped as follows: IE, n = 14; FE, n = 18; and CE, n = 22. The children with IE were slightly older than the other groups, IE mean 7.57; FE mean 6.22; CE, mean 6.56 (p = 0.004). When comparing the groups in terms of the measured parameters, only one significant difference was found: the FE group had larger average daytime voided volumes, but only when the first morning void was included. The only significantly differing anamnestic variable was previous daytime incontinence, which was more common among the children in the IE group.CONCLUSIONS: When comparing children with varying enuresis severity, no major differences regarding bladder function and urine production were found. Furthermore, children with infrequent enuresis tend to be slightly older when they seek medical help.
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| 7. |
- Cederblad, Maria, 1968-, et al.
(författare)
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No effect of basic bladder advice in enuresis : a randomised controlled trial
- 2015
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Ingår i: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 11:3
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThere are two firstline, evidence-based treatments available for nocturnal enuresis: desmopressin and the enuresis alarm. Prior to use of these therapies, international experts usually recommend that the children also be given basic bladder training during the daytime. The rationale behind this recommendation is that daytime bladder training or urotherapy, is a mainstay in the treatment of daytime incontinence caused by detrusor overactivity. Still, there is, as yet, no firm evidence that daytime bladder training is useful against nocturnal enuresis.AimTo explore whether basic bladder advice has any effect against nocturnal enuresis.Study designThe study was prospective, randomized, and controlled. The evaluated intervention was bladder advice, given in accordance with ICCS guidelines and focused on regular voiding, sound voiding posture, and sufficient fluid intake. Forty children aged 6 years or more with previously untreated enuresis, but no daytime incontinence, were randomized (20 in each group) to receive either first basic bladder advice for 1 month and then alarm therapy (group A) or just the alarm therapy (group B). Based on power calculations, the minimum number of children required in each treatment arm was 15.ResultsThe basic bladder advice did not reduce the enuresis frequency in group A (p = 0.089) and the end result after alarm therapy did not differ between the two groups (p = 0.74) (see Table). Only four children in group A had a partial or full response to bladder training, and two of these children relapsed immediately during alarm therapy.DiscussionThis was the first study to evaluate, in a prospective, randomized manner, the value of daytime basic bladder training as a treatment of enuresis. It was found that the treatment neither resulted in a significant reduction in the number of wet nights, nor did it improve the success of subsequent alarm therapy.ConclusionsThe recommendation that all children with enuresis be given bladder training as a firstline therapy can no longer be supported. Instead, we recommend that treatment of these children start with the enuresis alarm or desmopressin without delay.
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| 8. |
- Cederved, Catarina, et al.
(författare)
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Acceptability and potential impact on perceived anxiety of a serious game about radiotherapy in children aged 5 to 14 years : A feasibility and randomized controlled pilot trial
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- A web-based serious game was developed as psychological preparation for children who are going to undergo radiotherapy. The game was developed together with children with experience of radiotherapy. The study aimed to investigate the feasibility in terms of reach, usability, and acceptability, of a serious game about radiotherapy, and to evaluate whether it can decrease anxiety levels in children aged 5 to14 years undergoing radiotherapy. The study was designed as a randomized controlled pilot trial with predefined feasibility criteria. Twenty-eight children were assessed for eligibility and 23 were found to meet the inclusion criteria. They were consecutively randomized into one of two study arms. One child was excluded after randomization due to language difficulties. If randomized into Group 1, the children received the intervention (serious game) before treatment started. Children in Group 2 received the intervention after three days of treatment. Questionnaires with fixed answers were used to assess anxiety levels (an adapted version of STAIC) and experiences of gameplay (an adapted version of PENS). The predefined feasibility criterion that the children should play the game for 20 minutes or more was not met. The second criterion, that 70% or more of the participants should return all of the questionnaires was not met either, however, more than 80% returned the PENS questionnaires. All feasibility criteria set for the study were not meet, suggesting that adaptions need to be made if a future study is going to be undertaken. There was no indication that playing the serious game decreased the children’s stated anxiety. When combining the two groups, a pattern emerged that anxiety levels decreased over time. The PENS questionnaire adapted for children showed promising results regarding player satisfaction when using the serious game within healthcare. The trial was registered at ClinicalTrials.gov:NCT04728555
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| 9. |
- Cederved, Catarina, 1979-
(författare)
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Alleviating anxiety in children with cancer facing radiotherapy : The creation of a serious game
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Children undergoing radiotherapy (RT) can experience anxiety, and explaining the procedure through a serious game could be a means to alleviate anxiety. Children have the right to take part in research that concerns them. Through co-creation stakeholders can be part of the process and thereby ensure that the developed product is suitable for the end users. The overarching aim was to investigate the developmental process of a serious game about RT, with a focus on the influence of co-creation, the feasibility of the game, and the game’s effects on self-rated anxiety by children undergoing RT.The thesis consists of four studies, where the first three describes the developmental process of the serious game from different aspects. Study I describes the children’s and their parents’ contributions to the game development based on data from interviews, audio recordings from workshops, and filmed gameplay. Nine children participated, 7 to 10 years old. Study II describes the experiences of seven parents who participated in the first study through interviews. Study III consist of interviews made with thirteen researchers, game designers and hospital staff. The interviews describe the participants’ experiences of taking part in the developmental process of the game. In study IV, reach and acceptability of the game was tested through a feasibility study at one clinic. . It was a randomized pilot, waiting list based study where 22 children participated. Analyses were performed by thematic analysis (Study I and III), content analysis (Study II) and statistical calculations (Study IV).The results showed that every participant involved in the development of the game contributed to the process. The method used in study I can be applied by researchers to co-create serious games with children. The children were active participants and had a consulting and informative role in the development, and their participation led to numerous changes. The interdisciplinary work was challenging but with ample time and an open climate it worked. A majority of children reported anxiety at the start of RT. In conclusion, the children’s participation impacted the game’s design and its content. The children’s abilities to participate in workshops was affected by their disease. Not all of the feasibility criteria set for study IV were reached. There were too few participants enrolled in the study to conclusively answer if the game had an effect on self-reported anxiety.
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| 10. |
- Cederved, Catarina, et al.
(författare)
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Behind the scenes of the development of a serious game for health for children : An interdisciplinary interview study exploring perspectives from game designers, researchers, and experts from the field of hospital care
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- It is considered advantageous to adopt an interdisciplinary approach when creating serious games in the sphere of health practice. However, different fields have reported that interdisciplinary work is challenging. Yet, the literature is scarce regarding how participants within health research have experienced collaborative research. In 2019 and 2020 three teams worked together to produce a serious game for children undergoing radiotherapy. The game was designed for children aged 5-14 years. The aim of this study was to describe the experiences of the participants in the teams from the production phase of a serious game about radiotherapy. Thirteen in depth interviews were carried out with members from all three teams. The teams included game designers, a research team, and an expert team. The latter consisted of a play therapist, a pediatric nurse, and radiation oncology nurses. A reflective thematic analysis was performed where one main theme and four subthemes were formulated. The main theme was: A learning experience during the participatory process. The subthemes were: (1) New insights were established due to the collaboration, (2) Games give the impression of being easy, yet are complex to produce, (3) The amount of time spent meeting in the teams was beneficial to the experience, and (4) The impact of having confidence in the game that was designed. In conclusion, knowledge expansion arose on several levels during the production phase. Having time and building trust in team constellations are significant factors in achieving a productive and favorable/beneficial experience for participants. Further, confidence in the end product could be a contributory factor for participants continuing to work and the understanding of the complexity of the evolving process.
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