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  • 1
    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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  • 2
    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
    detail.hit.zdb_id: 2895377-0
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  • 3
    Online Resource
    Online Resource
    Defining and Measuring Resilience in Children with a Chronic Disease: a Scoping Review
    Springer Science and Business Media LLC ; 2023
    In:  Adversity and Resilience Science Vol. 4, No. 2 ( 2023-06), p. 105-123
    Details
    In: Adversity and Resilience Science, Springer Science and Business Media LLC, Vol. 4, No. 2 ( 2023-06), p. 105-123
    Abstract: More than 25% of all children grow up with a chronic disease. They are at higher risk for developmental and psychosocial problems. However, children who function resiliently manage to adapt positively to these challenges. We aim to systematically review how resilience is defined and measured in children with a chronic disease. A search of PubMed, Cochrane, Embase, and PsycINFO was performed on December 9, 2022, using resilience, disease, and child/adolescent as search terms. Two reviewers independently screened articles for inclusion according to predefined criteria. Extraction domains included study characteristics, definition, and instruments assessing resilience outcomes, and resilience factors. Fifty-five out of 8766 articles were identified as relevant. In general, resilience was characterized as positive adaptation to adversity. The included studies assessed resilience by the outcomes of positive adaptation, or by resilience factors, or both. We categorized the assessed resilience outcomes into three groups: personal traits, psychosocial functioning, and disease-related outcomes. Moreover, myriad of resilience factors were measured, which were grouped into internal resilience factors (cognitive, social, and emotional competence factors), disease-related factors, and external factors (caregiver factors, social factors, and contextual factors). Our scoping review provides insight into the definitions and instruments used to measure resilience in children with a chronic disease. More knowledge is needed on which resilience factors are related to positive adaptation in specific illness-related challenges, which underlying mechanisms are responsible for this positive adaptation, and how these underlying mechanisms interact with one another.
    Type of Medium: Online Resource
    ISSN: 2662-2424 , 2662-2416
    URL: Article
    DOI: 10.1007/s42844-023-00092-2
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2978296-X
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  • 4
    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
    detail.hit.zdb_id: 2895377-0
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  • 5
    Online Resource
    Online Resource
    Psychosocial functioning in adolescents growing up with chronic disease: The Dutch HBSC study
    Springer Science and Business Media LLC ; 2022
    In:  European Journal of Pediatrics Vol. 181, No. 2 ( 2022-02), p. 763-773
    Details
    In: European Journal of Pediatrics, Springer Science and Business Media LLC, Vol. 181, No. 2 ( 2022-02), p. 763-773
    Abstract: Many adolescents worldwide (indirectly) grow up with a chronic disease, which may impact their functioning and wellbeing. The objective of this study is to assess whether adolescents with a (family member with a) chronic disease differ from their healthy counterparts in terms of psychosocial functioning. Data from the Dutch 2013 HBSC-survey were used, including 7168 adolescents ( Mean age  = 13.7, SD = 1.57, 50.5% female). Participants indicated whether they or one of their family members had a long-term ( 〉  3 months) disease or disability (mental/physical) and were categorized into four groups based on disease presence (none, other, self, both). Psychosocial functioning was assessed in terms of life satisfaction, self-rated health, psychosomatic health, mental health problems, support, substance use, physical exercise, screen time, and school liking. Chronically diseased adolescents ( n  = 162) reported lower life satisfaction, self-rated and psychosomatic health, more mental health problems, lower peer support, more substance use, and less physical exercise compared to healthy peers. Chronically diseased adolescents who also had a family member with a chronic disease ( n  = 74) showed comparable outcomes on these life domains, although they did not differ from their healthy peers regarding peer support, substance use, and physical activity. Healthy adolescents with a chronically diseased family member ( n  = 737) reported significantly lower life satisfaction, self-rated and psychosomatic health, more mental health problems, and less family support compared to healthy peers who grew up in healthy families; however, they reported more positive outcomes than adolescents who had a chronic disease themselves. Conclusion : Having a (family member with a) chronic disease is associated with impaired psychosocial functioning on various life domains. Our findings aid in understanding the psychosocial associates of chronic disease and imply that caregivers should be observant of psychosocial problems among vulnerable adolescents to provide appropriate guidance. What is Known: • Adolescents who grow up with a (family member with a) chronic disease encounter numerous challenges that may be related to poorer developmental outcomes on the long term. What is New: • This study adds a comprehensive overview of the psychosocial functioning of adolescents with a (family member with a) chronic disease, as compared to healthy counterparts that grow up in a healthy family.
    Type of Medium: Online Resource
    ISSN: 0340-6199 , 1432-1076
    URL: Article
    DOI: 10.1007/s00431-021-04268-9
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2647723-3
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  • 6
    Online Resource
    Online Resource
    Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study
    JMIR Publications Inc. ; 2021
    In:  Journal of Medical Internet Research Vol. 23, No. 8 ( 2021-8-13), p. e24839-
    Details
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 23, No. 8 ( 2021-8-13), p. e24839-
    Abstract: Internet-based cognitive behavior therapy (I-CBT) for adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been shown to be effective in a randomized controlled trial (RCT; Fatigue in Teenagers on the Internet [FITNET]). FITNET can cause a significant reduction in fatigue and disability. Objective We aimed to investigate whether FITNET treatment implemented in routine clinical care (IMP-FITNET) was as effective, using the outcomes of the FITNET RCT as the benchmark. Methods Outcomes of CFS/ME adolescents who started IMP-FITNET between October 2012 and March 2018 as part of routine clinical care were compared to the outcomes in the FITNET RCT. The primary outcome was fatigue severity assessed posttreatment. The secondary outcomes were self-reported physical functioning, school attendance, and recovery rates. Clinically relevant deterioration was assessed posttreatment, and for this outcome, a face-to-face CBT trial was used as the benchmark. The attitude of therapists toward the usability of IMP-FITNET was assessed through semistructured interviews. The number of face-to-face consultations during IMP-FITNET was registered. Results Of the 384 referred adolescents with CFS/ME, 244 (63.5%) started IMP-FITNET, 84 (21.9%) started face-to-face CBT, and 56 (14.6%) were not eligible for CBT. Posttreatment scores for fatigue severity (mean 26.0, SD 13.8), physical functioning (mean 88.2, SD 15.0), and full school attendance (mean 84.3, SD 26.5) fell within the 95% CIs of the FITNET RCT. Deterioration of fatigue and physical functioning after IMP-FITNET was observed at rates of 1.2% (n=3) and 4.1% (n=10), respectively, which is comparable to a waiting list condition (fatigue: 1.2% vs 5.7%, χ21=3.5, P=.06; physical functioning: 4.1% vs 11.4%, χ21=3.3, P=.07). Moreover, 41 (16.8%) IMP-FITNET patients made use of face-to-face consultations. Conclusions IMP-FITNET is an effective and safe treatment for adolescents with CFS/ME in routine clinical care.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    URL: Article
    DOI: 10.2196/24839
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2028830-X
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