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  • 1
    Online Resource
    Online Resource
    Development of the My Positive Health dialogue tool for children: a qualitative study on children’s views of health
    BMJ ; 2022
    In:  BMJ Paediatrics Open Vol. 6, No. 1 ( 2022-04), p. e001373-
    Details
    In: BMJ Paediatrics Open, BMJ, Vol. 6, No. 1 ( 2022-04), p. e001373-
    Abstract: Children’s views of health were explored in order to develop a health dialogue tool for children. Methods A qualitative research design was used as part of a codesign process. Based on semi-structured interviews with both healthy children and children with a chronic condition (aged 8–18). Two approaches were applied. The first was an open exploration of children’s views on health, which was then thematically analysed. Subsequently, a framework was used, based on the six-dimensional My Positive Health (MPH) dialogue tool for adults, to guide the second part of the interviews, focusing on reviewing the children’s view on health within the context of the framework. For the final draft of the dialogue tool, a framework analysis was conducted and then validated by members of the ‘children’s council’ of the Wilhelmina Children’s Hospital. Results We interviewed 65 children, 45 of whom had a chronic condition and 20 were healthy. The children described a broad concept of health with the central themes of ‘feeling good about yourself’ and ‘being able to participate’. Based on the subsequent framework analysis, the wording of two of the six dimensions of the MPH dialogue tool was adjusted and the related aspects were adapted for better alignment with the children’s concept of health. After these modifications, the tool fully matched the children’s concept of health. Conclusion The MPH dialogue tool for children was developed for children with and without a chronic condition, to help them open up about what they consider important for their health and well-being, and to improve directorship over decisions and actions that would affect their health. The MPH dialogue tool aims to support healthcare professionals in providing the type of care and treatment that is in line with the needs of their young patients/clients.
    Type of Medium: Online Resource
    ISSN: 2399-9772
    URL: Article
    DOI: 10.1136/bmjpo-2021-001373
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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  • 2
    Online Resource
    Online Resource
    Daily life participation in childhood chronic disease: a qualitative study
    BMJ ; 2020
    In:  Archives of Disease in Childhood Vol. 105, No. 5 ( 2020-05), p. 463-469
    Details
    In: Archives of Disease in Childhood, BMJ, Vol. 105, No. 5 ( 2020-05), p. 463-469
    Abstract: Opportunities to participate in daily life have improved considerably for children with chronic disease. Nevertheless, they still face challenges associated with their ever-present illness affecting every aspect of their lives. To best help these children, we aimed to assess the child’s own perspective on participation and the main considerations that affect participation in a stable phase of disease. Methods Qualitative study design was applied. Semistructured, indepth interviews were conducted and analysed by a general inductive approach using constant comparison, coding and categorisation. Children 8–18 years old with a chronic disease were recruited from a cohort study involving cystic fibrosis, autoimmune disease and post-treatment paediatric cancer. Results 31 of the 56 (55%) invited patients participated. From the perspective of children with chronic disease, participation is considered more than merely engaging in activities; rather, they view having a sense of belonging, the ability to affect social interactions and the capacity to keep up with peers as key elements of full participation. Some children typically placed a higher priority on participation, whereas other children typically placed a higher priority on their current and/or future needs, both weighing the costs and benefits of their choices and using disclosure as a strategy. Conclusions Enabling full participation from the child’s perspective will help realise patient-centred care, ultimately helping children self-manage their participation. Caregivers can stimulate this participation by evaluating with children how to achieve a sense of belonging, active involvement and a role within a peer group. This requires active collaboration between children, healthcare providers and caregivers.
    Type of Medium: Online Resource
    ISSN: 0003-9888 , 1468-2044
    URL: Article
    DOI: 10.1136/archdischild-2019-318062
    Language: English
    Publisher: BMJ
    Publication Date: 2020
    detail.hit.zdb_id: 1481191-1
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  • 3
    Online Resource
    Online Resource
    Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective
    BMJ ; 2021
    In:  BMJ Paediatrics Open Vol. 5, No. 1 ( 2021-05), p. e001057-
    Details
    In: BMJ Paediatrics Open, BMJ, Vol. 5, No. 1 ( 2021-05), p. e001057-
    Abstract: To understand how a child with a stable chronic disease and his/her parents shape his/her daily life participation, we assessed: (1) the parents’ goals regarding the child’s daily life participation, (2) parental strategies regarding the child’s participation and () how children and their parents interrelate when their goals regarding participation are not aligned. Methods This was a qualitative study design using a general inductive approach. Families of children 8–19 years with a stable chronic disease (cystic fibrosis, autoimmune disease or postcancer treatment) were recruited from the PROactive study. Simultaneous in-depth interviews were conducted separately with the child and parent(s). Analyses included constant comparison, coding and categorisation. Results Thirty-one of the 57 invited families (54%) participated. We found that parents predominantly focus on securing their child’s well-being, using participation as a means to achieve well-being. Moreover, parents used different strategies to either support participation consistent with the child’s healthy peers or support participation with a focus on physical well-being. The degree of friction between parents and their child was based on the level of agreement on who takes the lead regarding the child’s participation. Conclusions Interestingly, parents described participation as primarily a means to achieve the child’s well-being, whereas children described participation as more of a goal in itself. Understanding the child’s and parent’s perspective can help children, parents and healthcare professionals start a dialogue on participation and establish mutual goals. This may help parents and children find ways to interrelate while allowing the child to develop his/her autonomy.
    Type of Medium: Online Resource
    ISSN: 2399-9772
    URL: Article
    DOI: 10.1136/bmjpo-2021-001057
    Language: English
    Publisher: BMJ
    Publication Date: 2021
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  • 4
    Online Resource
    Online Resource
    Fatigue in childhood chronic disease
    BMJ ; 2019
    In:  Archives of Disease in Childhood Vol. 104, No. 11 ( 2019-11), p. 1090-1095
    Details
    In: Archives of Disease in Childhood, BMJ, Vol. 104, No. 11 ( 2019-11), p. 1090-1095
    Abstract: Recently, in adults, the incidence and severity of fatigue was found to exist rather independently from the somatic diagnosis. Since fatigue is distressing when growing up with a chronic disease, we aim to investigate: (1) the prevalence and extent of fatigue among various paediatric chronic diseases and (2) the effect of fatigue on health-related quality of life (HRQoL). Design and setting Cross-sectional study in two children’s hospitals. Patients Children and adolescents 2–18 years of age with cystic fibrosis, an autoimmune disease or postcancer treatment visiting the outpatient clinic. Outcome measures Fatigue and HRQoL were assessed using the Pediatric Quality of Life Inventory (PedsQL) multidimensional fatigue scale (with lower scores indicating more fatigue) and PedsQL generic core scales, respectively. Linear regression analysis and analysis of covariance were used to compare fatigue scores across disease groups and against two control groups. The effect of fatigue on HRQoL was calculated. Data were adjusted for age, sex and reporting method. Results 481 children and adolescents were assessed (60% participation rate, mean age 10.7±4.9, 42% men). Children and adolescents with chronic disease reported more fatigue than the general population (mean difference −6.6, 95% CI −8.9 to –4.3 (range 0–100)), with a prevalence of severe fatigue of 21.2%. Fatigue scores did not differ significantly between disease groups on any fatigue domain. Fatigue was associated with lower HRQoL on all domains. Conclusions Fatigue in childhood chronic disease is a common symptom that presents across disease, age and sex groups. Fatigue affects HRQoL. Our findings underscore the need to systematically assess fatigue. Future studies should determine possible biological and psychosocial treatment targets.
    Type of Medium: Online Resource
    ISSN: 0003-9888 , 1468-2044
    URL: Article
    DOI: 10.1136/archdischild-2019-316782
    Language: English
    Publisher: BMJ
    Publication Date: 2019
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  • 5
    Online Resource
    Online Resource
    Role of parents in fatigue of children with a chronic disease: a cross-sectional study
    BMJ ; 2021
    In:  BMJ Paediatrics Open Vol. 5, No. 1 ( 2021-05), p. e001055-
    Details
    In: BMJ Paediatrics Open, BMJ, Vol. 5, No. 1 ( 2021-05), p. e001055-
    Abstract: As parents majorly impact their child’s well-being, and as fatigue is a highly prevalent threat to the well-being of children with a chronic disease, we aimed to explore the association between parental factors and fatigue in children with a chronic disease. Design Cross-sectional study Setting Two Dutch children’s hospitals. Population Children 2–18 years of age with either an autoimmune disease, cystic fibrosis or post-cancer treatment, and one of their parents. Main outcome measures Paediatric fatigue was measured using the PedsQL Multidimensional Fatigue Scale. Parental factors included parental pain, fatigue and physical symptoms, parental distress, catastrophising thoughts about their child’s pain and family empowerment. Multiple linear regressions were used to study associations with paediatric fatigue. A multivariable regression model was used to assess the effect of the different parental factors on paediatric fatigue. All analyses were adjusted for the age and sex of the child. Results 204 families participated (mean age 11.0±4.3 and 43.5±6.3 years for children and parents, respectively; 69% participation rate). More parental pain, fatigue and physical symptoms, and more parental distress and pain catastrophising were associated with more paediatric fatigue. More parental empowerment was associated with less paediatric fatigue on both subscales. In the multivariable model, only paediatric age remained significantly associated with fatigue. In a separate multivariable model for children 8–18 years old, more parental distress (β=−1.9, 95% CI −3.7 to −0.1) was also significantly associated with more paediatric fatigue. Conclusions In a population of children with a chronic disease, parental factors, both physical and psychosocial, were associated with paediatric fatigue. Our study provides evidence that more family empowerment is associated with less paediatric fatigue. This exploratory study adds to our knowledge of associated factors with fatigue in paediatric chronic disease, providing starting points for targeted interventions.
    Type of Medium: Online Resource
    ISSN: 2399-9772
    URL: Article
    DOI: 10.1136/bmjpo-2021-001055
    Language: English
    Publisher: BMJ
    Publication Date: 2021
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  • 6
    Online Resource
    Online Resource
    Fatigue among children with a chronic disease: a cross-sectional study
    BMJ ; 2021
    In:  BMJ Paediatrics Open Vol. 5, No. 1 ( 2021-02), p. e000958-
    Details
    In: BMJ Paediatrics Open, BMJ, Vol. 5, No. 1 ( 2021-02), p. e000958-
    Abstract: To determine: (1) which biological/lifestyle, psychological and/or social factors are associated with fatigue among children with a chronic disease and (2) how much each of these factors contributes to explaining variance in fatigue. Design and setting This was a cross-sectional study across two children’s hospitals. Patients We included children aged 8–18 years who visited the outpatient clinic with cystic fibrosis, an autoimmune disease or postcancer treatment. Main outcome measures Fatigue was assessed using the PedsQL Multidimensional Fatigue Scale. Generic biological/lifestyle, psychological and social factors were assessed using clinical assessment tools and questionnaires. Multiple linear regression analyses were used to test the associations between these factors and fatigue. Finally, a multivariable regression model was used to determine which factor(s) have the strongest effect on fatigue. Results A total of 434 out of 902 children were included (48% participation rate), with a median age of 14.5 years; 42% were male. Among these 434 children, 21.8% were severely fatigued. Together, all biopsychosocial factors explained 74.6% of the variance in fatigue. More fatigue was uniquely associated with poorer physical functioning, more depressive symptoms, more pressure at school, poorer social functioning and older age. Conclusions Fatigue among children with a chronic disease is multidimensional. Multiple generic biological/lifestyle, psychological and social factors were strongly associated with fatigue, explaining 58.4%; 65.8% and 50.0% of the variance in fatigue, respectively. Altogether, almost three-quarters of the variance in fatigue was explained by this biopsychosocial model. Thus, when assessing and treating fatigue, a transdiagnostic approach is preferred, taking into account biological, psychological and social factors.
    Type of Medium: Online Resource
    ISSN: 2399-9772
    URL: Article
    DOI: 10.1136/bmjpo-2020-000958
    Language: English
    Publisher: BMJ
    Publication Date: 2021
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  • 7
    Online Resource
    Online Resource
    Implementation of the Dutch expertise centre for child abuse: descriptive data from the first 4 years
    BMJ ; 2019
    In:  BMJ Open Vol. 9, No. 8 ( 2019-08), p. e031008-
    Details
    In: BMJ Open, BMJ, Vol. 9, No. 8 ( 2019-08), p. e031008-
    Abstract: Combined paediatric and forensic medical expertise to interpret physical findings is not available in Dutch healthcare facilities. The Dutch Expertise Centre for Child Abuse (DECCA) was founded in the conviction that this combination is essential in assessing potential physical child abuse. DECCA is a collaboration between the three paediatric hospitals and the Netherlands Forensic Institute. DECCA works with Bayes’ theorem and uses likelihood ratios in their conclusions. Design We present the implementation process of DECCA and cross-sectional data of the first 4 years. Participants Between 14 December 2014 and 31 December 2018, a total of 761 advisory requests were referred, all of which were included in this study. An advisee evaluation over the year 2015 was performed using a self-constructed survey to gain insight in the first experiences with DECCA. Results 761 cases were included, 381 (50.1%) boys and 361 (47.4%) girls (19 cases (2.5%) sex undisclosed). Median age was 1.5 years (range 1 day to 20 years). Paediatricians (53.1%) and child safeguarding doctors (21.9%) most frequently contacted DECCA. The two most common reasons for referral were presence of injury/skin lesions (n=592) and clinical history inconsistent with findings (n=145). The most common injuries were bruises (264) and non-skull fractures (166). Outcome of DECCA evaluation was almost certainly no or improbable child abuse in 35.7%; child abuse likely or almost certain in 24.3%, and unclear in 12%. The advisee evaluations (response rate 50%) showed that 93% experienced added value and that 100% were (very) satisfied with the advice. Conclusion Data show growing interest in the expertise of DECCA through the years. DECCA seems to be a valuable addition to Dutch child protection, since advisee value the service and outcome of DECCA evaluations. In almost half of the cases, DECCA concluded that child abuse could not be substantiated.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2019-031008
    Language: English
    Publisher: BMJ
    Publication Date: 2019
    detail.hit.zdb_id: 2599832-8
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  • 8
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    Online Resource
    Game mechanics in eHealth interventions promoting self-management in young people with chronic diseases: a protocol for a systematic review and meta-analyses from the eHealth Junior Consortium
    BMJ ; 2022
    In:  BMJ Open Vol. 12, No. 9 ( 2022-09), p. e059581-
    Details
    In: BMJ Open, BMJ, Vol. 12, No. 9 ( 2022-09), p. e059581-
    Abstract: Young people (aged 10–25 years) with chronic diseases are vulnerable to have reduced social participation and quality of life. It is important to empower young people to engage in their chronic diseases self-management. In comparison with traditional face-to-face care, interventions delivered through the internet and related technologies (eHealth) are less stigmatising and more accessible. Gamified eHealth self-management interventions may be particularly promising for young people. This systematic review aims at identifying (1) the game mechanics that have been implemented in eHealth interventions to support young people’s self-management of their chronic (somatic or psychiatric) diseases, (2) the investigators’ rationale for implementing such game mechanics and, if possible, (3) the effects of these interventions. Methods and analysis The Preferred Reporting Items for Systematic reviews and Meta-Analysis statement guidelines will be followed. A systematic search of the literature will be conducted in Embase, Psycinfo and Web of Science from inception until 30 August 2022. Studies will be eligible if focused on (1) young people (aged 10–25 years) with chronic diseases and (2) describing gamified eHealth self-management interventions. When possible, the effects of the gamified interventions will be compared with non-gamified interventions or care-as-usual. Primary quantitative, qualitative or mixed-method studies written in English will be included. Two independent reviewers will (1) select studies, (2) extract and summarise the implemented game mechanics as well as the characteristics of the intervention and study, (3) evaluate their methodological quality and (4) synthesise the evidence. The reviewers will reach a consensus through discussion, and if required, a third researcher will be consulted. Ethics and dissemination As systematic reviews use publicly available data, no formal ethical review and approval are needed. Findings will be published in peer-reviewed journals, presented at conferences and communicated to relevant stakeholders including patient organisations via the eHealth Junior Consortium. PROSPERO registration number CRD42021293037.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    URL: Article
    DOI: 10.1136/bmjopen-2021-059581
    DOI: 10.1136/bmjopen-2021-059581.supp1
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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  • 9
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    Value of systematic detection of physical child abuse at emergency rooms: a cross-sectional diagnostic accuracy study
    BMJ ; 2016
    In:  BMJ Open Vol. 6, No. 3 ( 2016-03), p. e010788-
    Details
    In: BMJ Open, BMJ, Vol. 6, No. 3 ( 2016-03), p. e010788-
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2015-010788
    Language: English
    Publisher: BMJ
    Publication Date: 2016
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  • 10
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    Online Resource
    Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts
    BMJ ; 2015
    In:  BMJ Open Vol. 5, No. 10 ( 2015-10), p. e008830-
    Details
    In: BMJ Open, BMJ, Vol. 5, No. 10 ( 2015-10), p. e008830-
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2015-008830
    Language: English
    Publisher: BMJ
    Publication Date: 2015
    detail.hit.zdb_id: 2599832-8
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