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1.	Kassa, Ann-Marie, 1955- (author) Living with VACTERL association : From the perspectives of children, adolescents and their parents 2019 Doctoral thesis (other academic/artistic)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.
2.	Kassa, Ann-Marie, 1955-, et al. (author) Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study 2022 In: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 17:5 Journal article (peer-reviewed)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.
3.	Almblad, Ann-Charlotte, 1965-, et al. (author) From skepticism to assurance and control : Implementation of a patient safety system at a pediatric hospital in Sweden 2018 In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:11 Journal article (peer-reviewed)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.
4.	Almblad, Ann-Charlotte, 1965-, et al. (author) Implementation of Pediatric Early Warning Score : Adherence to Guidelines and Influence of Context 2018 In: Journal of Pediatric Nursing. - : Elsevier BV. - 0882-5963 .- 1532-8449. ; 38, s. 33-39 Journal article (peer-reviewed)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.
5.	Almblad, Ann-Charlotte, 1965-, et al. (author) 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 Journal article (peer-reviewed)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.
6.	Cederblad, Maria, 1968-, et al. (author) Infrequent enuresis, the uninvestigated majority : comparisons between children with enuresis of varying severity. 2015 In: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 11:1, s. 24.e1-24.e6 Journal article (peer-reviewed)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.
7.	Cederblad, Maria, 1968-, et al. (author) No effect of basic bladder advice in enuresis : a randomised controlled trial 2015 In: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 11:3 Journal article (peer-reviewed)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.
8.	Cederved, Catarina, et al. (author) 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 Other publication (other academic/artistic)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
9.	Cederved, Catarina, 1979- (author) Alleviating anxiety in children with cancer facing radiotherapy : The creation of a serious game 2023 Doctoral thesis (other academic/artistic)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.
10.	Cederved, Catarina, et al. (author) 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 Other publication (other academic/artistic)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.
11.	Cederved, Catarina, et al. (author) Co-creation of a Serious Game About Radiotherapy : Participatory Action Research Study With Children Treated for Cancer 2022 In: JMIR Human Factors. - : JMIR Publications Inc.. - 2292-9495. ; 9:2 Journal article (peer-reviewed)abstract Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user.Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy.Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children’s participation changed the game.Results: Two main themes were identified. The first theme was “The children’s participation was affected by their health and treatment” and included the following subthemes: “an opportunity to share emotions and perceptions of radiotherapy” and “the possibility to participate was affected by the severity of the disease.” The second theme was “participation allowed becoming an active part of game development” and included the following subthemes: “the opportunity to express sentiments about the game,” “the emergence of a playable game through the children’s contributions,” and “the necessity of understanding the text.”Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children’s illness affected their possibility to take part; thus, it is crucial to accommodate the children’s needs when conducting similar studies. The parents’ participation facilitated the meetings for their children, even though their involvement in the game design was negligible.
12.	Cederved, Catarina, et al. (author) Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy 2023 In: Radiography. - : Elsevier. - 1078-8174 .- 1532-2831. ; 29:1, s. 95-100 Journal article (peer-reviewed)abstract INTRODUCTION: Radiotherapy (RT) is one of several treatment modalities used for children diagnosed with cancer. Several studies have designed interventions aimed to alleviate the stress that can occur in conjunction with RT. To include children in the design of interventions is rare and dependent on the parents giving consent to participation in research on their children's behalf. The aim was to illuminate, from the parents' perspective, the experience of their children being part in the co-creation of a serious game and their previous experiences of RT.METHODS: Ten parents of children taking part in a participatory action research study of the development of a serious game were invited to an interview and seven parents consented. An inductive, manifest content analysis was performed.RESULTS: The analysis resulted in an overarching theme: Parents' pre-understanding from their child's cancer treatment created a sensitivity to their child's wishes and a willingness to contribute to science. Four categories are presented: Intrinsic factors influenced the intent to participate, Extrinsic factors that had an effect on participation, Parents role in the game development, and Radiotherapy impinged the child and the parent.CONCLUSION: To be able to pay it forward to healthcare and other families with a child diagnosed with cancer was a contributing factor for parents' willingness to consent to participation after their children had undergone RT, especially since their children wanted to do so. Parents indicated interest in the developmental process and in following their children being part of the creation of a serious game about RT.IMPLICATION FOR PRACTICE: To understand why parents allow their children to participate in studies creates opportunities for the research community to structure studies that facilitate participation.
13.	Engvall, Gunn, 1955-, et al. (author) Children's experiences and responses towards an intervention for psychological preparation for radiotherapy. 2018 In: Radiation Oncology. - : Springer Science and Business Media LLC. - 1748-717X. ; 13 Journal article (peer-reviewed)abstract BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy.METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety.RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group.CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development.
14.	Kalm-Stephens, Pia, 1959- (author) Development of allergic and respiratory symptoms in adolescence and early adulthood : Risk factors and gender differences 2020 Doctoral thesis (other academic/artistic)abstract Background: Asthma and allergic diseases have increased in prevalence for several decades and affect a substantial number of individuals in everyday life, as well as their families and public healthcare resources. Subjects with asthma report impaired self-rated health. Fractional exhaled nitric oxide (FeNO) is a marker of type 2 inflammation in the airways and higher levels may precede the development of allergic and respiratory disease.Aims: To investigate the development of allergic and respiratory symptoms in adolescence and early adulthood, and related baseline risk factors. Further, to study self-rated health in young adults with reported asthma.Methods: A total of 959 schoolchildren completed a standardized respiratory questionnaire and underwent lung function and FeNO measurements at baseline (12–15 years; early adolescence). Four (late adolescence) and sixteen (early adulthood) years later, 921 (96%) and 502 (52%) of these individuals completed a similar questionnaire. A total of 491 subjects participated in all three examinations. Nineteen clinically assessed non-asthmatic subjects with elevated FeNO and 28 control subjects with low FeNO and without symptoms of asthma or allergy in early adolescence were identified. Their FeNO, IgE sensitization, airway responsiveness, and inflammatory markers in blood and sputum were measured.Results: The main finding was that higher FeNO in early adolescence was associated with an increased risk of developing allergic symptoms to cat and dog, but not pollen allergens, during adolescence. Gender-stratified data showed that obesity at baseline in girls and an atopic constitution in boys were associated with increased risk of developing wheeze during adolescence. The prevalence of asthma and wheeze had increased in early adulthood, but the increase was significant only in females. Reduced lung function at baseline in females and higher FeNO in males were associated with an increased risk of incident asthma sixteen years later. The increase in allergic symptoms during this period was significant but without sex differences. Asthmatic females rated their health worse than non-asthmatic females, a difference not observed in males. Non-asthmatic adolescents with higher FeNO at baseline were to a higher extent sensitized, had more reactive airways, higher blood eosinophil counts, and lower systemic activation of neutrophils, compared with controls.Conclusions: It is important to detect risk factors for the development of allergic and respiratory diseases at an early stage to optimize health and wellbeing. Gender differences in respiratory development, associated risk factors, and treatment of respiratory symptoms must be taken into account.
15.	Kalm-Stephens, Pia, 1959-, et al. (author) Incidence of asthma between adolescence and adulthood : early risk factors and gender differences Journal article (other academic/artistic)abstract Background: Several studies have shown gender diﬀerences in the prevalence of asthma at various ages. The aim was to investigate the development of respiratory symptoms between adolescence and adulthood in relation to baseline risk factors and gender, and the effect on self-rated health. Methods: In the study Screening project asthma in schools, adolescents aged 12–15 years answered a standardised respiratory questionnaire (ISAAC) and underwent measurements of fractional exhaled nitric oxide (FeNO) and lung function (FEV1) at baseline. Two follow-ups with similar questionnaires were performed after four and 16 years, with 491 subjects participating in all three examinations. Results: The prevalence rates of asthma and wheeze were unchanged after four years, but had increased after 16 years; the increase was significant for females only. A more continuous increase in allergic symptoms showed no gender difference. The adjusted odds ratio [aOR (95% confidence interval)] for the development of asthma was 4.11 (1.27, 13.24) times higher in females with reduced FEV1 and 1.13 (1.06, 1.20) times higher in males with higher FeNO at baseline. Females, but not males, with asthma, rated their health as poor to a higher extent than individuals without asthma at the last follow-up, 20.0% vs. 7.7% (p < 0.01). Conclusions: An increased prevalence of respiratory symptoms was seen primarily between late adolescence and young adulthood, and was significant for females but not males. To optimise health and wellbeing, gender differences in asthma development, associated risk factors, and treatment of respiratory symptoms, must be considered.
16.	Kassa, Ann-Marie, et al. (author) Children and adolescents with VACTERL association : health-related quality of life and psychological well-being in children and adolescents and their parents 2020 In: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 29:4, s. 913-924 Journal article (peer-reviewed)abstract PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents.METHODS: Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples.RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples.CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.
17.	Kassa, Ann-Marie, et al. (author) From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association : A complex congenital malformation 2019 In: PLOS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203. ; 14:4 Journal article (peer-reviewed)abstract Aim Knowledge is scarce regarding mothers' and fathers' experiences of being a parent of a child with VACTERL association-a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association. Method Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis. Results The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied. Conclusion Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child ' s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents' struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.
18.	Kassa, Ann-Marie, et al. (author) Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia 2017 In: Acta Paediatrica. - : WILEY. - 0803-5253 .- 1651-2227. ; 106:10, s. 1694-1701 Journal article (peer-reviewed)abstract Aim: Our knowledge of the perceptions that children with severe congenital malformations have of their health, treatment and how to improve hospital care is limited. This study focused on patients with vertebral defects, anal atresia, cardiac defects, tracheo-oesophageal fistula, renal anomalies and limb abnormalities (VACTERL).Methods: We interviewed 10 children aged five to eight years with VACTERL association who were treated in a Swedish tertiary paediatric surgical centre, using a computer-assisted technique called In My Shoes. The interviews were analysed by qualitative content analysis.Results: The children described their awareness of their health history and said they felt proud but different due to their physical dysfunction. They were happy to visit the hospital to meet familiar staff, but expressed negative feelings about missing normal life. They were afraid of needle-related procedures and not wakening up after anaesthesia. Various ways of coping with difficult situations were expressed, and suggestions to improve hospital care were voiced.Conclusion: Careful follow-up of these children by multidisciplinary teams is crucial to optimise their health and functional status. Fear of medical procedures may be reduced by carefully delivered information, listening to the children, providing continuity of care and creating individual care strategies.
19.	Lehmann, Vicky, et al. (author) Negative and positive consequences of adolescent cancer 10 years after diagnosis : An interview-based longitudinal study in Sweden 2014 In: Psycho-Oncology. - : Wiley-Blackwell. - 1057-9249 .- 1099-1611. ; 23:11, s. 1229-1235 Journal article (peer-reviewed)abstract OBJECTIVE: The aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis. METHODS: Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis. RESULTS: Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4). CONCLUSIONS: Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors’ positive views of life, sense of self, and close relationships.
20.	Lindström Nilsson, Maria, et al. (author) Children report positive experiences of animal-assisted therapy in paediatric hospital care 2020 In: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 109:5, s. 1049-1056 Journal article (peer-reviewed)abstract AimTo evaluate children's experiences of and responses to animal-assisted therapy using a therapy dog as complementary treatment in paediatric hospital care.MethodsThe study was performed using mixed methods, by means of qualitative and quantitative data. Fifty children in a paediatric surgery ward, at a tertiary hospital in Sweden, were included between February 2016 to May 2017. Children answered questions about feelings of well-being and experiences of the hospital stay before and after animal-assisted therapy, and experiences of their interaction with a therapy dog.ResultsThe children's well-being increased from moderately good before to very good after animal-assisted therapy, and the children assessed the hospital stay as better after than before. The vast majority of the children (93%) assessed the interaction with the dog as very good. The children described mixed experiences before and mainly positive aspects of joy, satisfaction and pain relief after animal-assisted therapy.ConclusionThe children's responses before interaction, of both a positive and negative nature, show a focus shift after the interaction with a therapy dog to mainly positive nature regarding self-reported feeling of well-being and experiences of the hospital stay. Using a therapy dog in paediatric hospital care is suitable complementary treatment.
21.	Lindström Nilsson, Maria, et al. (author) Children's interaction with a dog when having Animal Assisted Activity in paediatric hospital care 2023 In: Complementary Therapies in Clinical Practice. - : Elsevier. - 1744-3881 .- 1873-6947. ; 53 Journal article (peer-reviewed)abstract The aim of the study was to investigate the interaction process between child and dog and how it possibly affects children's wellbeing during Animal Assisted Activity.Children have reported negative feelings such as fear and anxiety when being cared for in hospital and various kinds of complementary treatment can alleviate this. Different complementary treatments, including interaction with a dog, can create positive emotions and the treatment has been reported to have both physiological and psychological beneficial effects. However, there is a lack of studies describing children's interaction with a dog.This is an observational study, analysed from field notes with qualitative content analysis using a deductive approach. Children (n = 49) aged 3–18 years of age at a paediatric hospital voluntarily participated in the study.The results are reported on a six-level scale that describes the child-dog interaction: 1. Passive interaction, 2. One-way non-spoken communication, 3. Facilitating the interaction, 4. Interaction by activity encouragement, 5. Interaction initiated by the child, and 6. Interaction through deepened interplay. All children attained level five. Eighty-nine per cent attained level six and these children interacted fully, having a two-way deepened interplay with the dog. Further, when the interaction proceeded to a deepened interplay this affected the children positively both physically and emotionally.Structured Animal Assisted Activity with a dog that includes an introduction, an active part and a relaxing part is a suitable model to offer children in paediatric hospital care since the children attained a child-initiated interaction or interaction through deepened interplay.
22.	Ångström-Brännström, Charlotte, et al. (author) Children Undergoing Radiotherapy : Swedish Parents' Experiences and Suggestions for Improvement 2015 In: PLOS ONE. - : Public library science. - 1932-6203. ; 10:10 Journal article (peer-reviewed)abstract Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multi-center study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.
23.	Ångström-Brännström, Charlotte, et al. (author) Parents’ experiences and responses to an intervention for psychological preparation of children and families during the child’s radiotherapy 2018 In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 35:2, s. 132-148 Journal article (peer-reviewed)abstract The aim of this study was to evaluate parents’ experiences and responses to a systematic intervention for psychological preparation of children and families during the child’s radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included—n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child’s RT.
24.	Ångström-Brännström, Charlotte, et al. (author) Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy 2019 In: Cancer Nursing. - : Wolters Kluwer. - 0162-220X .- 1538-9804. ; 42:5, s. E10-E18 Journal article (peer-reviewed)abstract Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child’s RT are sparsely described.Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child’s RT.Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis.Results: The analysis revealed 5 categories summarizing the staff members’ experiences. These include the following: experiences of various emotions; care for the child and the child’s family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement.Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential.Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

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