Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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Background Little is known about the nature and reactions to sexual abuse of children with intellectual disability (ID). The aim was to fill this gap. Method Official reports of sexual abuse of children with ID in state care were examined (N = 128) and compared with children without ID (N = 48). Results Clear signs of penetration or genital touching by male (adolescent) peers or (step/foster) fathers were found in most ID reports. Victims often received residential care and disclosed themselves. Type of perpetrator seemed to affect the nature and reaction to the abuse. Cases of children with and without ID seemed to differ in location and reports to police. Conclusions Screening of (foster)homes seems crucial. Residential facilities should find a balance between independence of children and protection. Care providers should be trained in addressing sexual issues and sexual education, accounting for different types of perpetrators (peers/adults). Uniform reporting guidelines are needed.
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Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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The study explored how chronic sorrow in parents of disabled children impacts everyday interactions between parents and professionals in caregiving contexts. Chronic sorrow, characterized by ongoing feelings of grief and loss in parents, related to their child’s disability, is increasingly recognized as having an influence on the relationship between professionals and parents. However, there is a lack of in-depth understanding of how chronic sorrow shapes dynamics in the parent–professional relationship. Through participatory action research, we explored the perspectives on chronic sorrow that parents and professionals brought into communication, ultimately leading to mutual understanding.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Objective: Despite the common occurrence of lower levels of physical activity and physical fitness in youth with spina bifida (SB) who use a wheelchair, there are very few tests available to measure and assess these levels. The purpose of this study was to determine reliability and the physiologic response of the 6-minute push test (6MPT) in youth with SB who self-propel a wheelchair. Methods: In this reliability and observational study, a sample of 53 youth with SB (5-19 years old; mean age = 13 years 7 months; 32 boys and 21 girls) who used a wheelchair performed 2 exercise tests: the 6MPT and shuttle ride test. Heart rate, minute ventilation, respiratory exchange ratio, and oxygen consumption were measured using a calibrated mobile gas analysis system and a heart rate monitor. For reliability, intraclass correlation coefficients (ICCs), SE of measurement, smallest detectable change for total covered distance, minute work, and heart rate were calculated. Physiologic response during the 6MPT was expressed as percentage of maximal values achieved during the shuttle ride test. Results: The ICCs for total distance and minute work were excellent (0.95 and 0.97, respectively), and the ICC for heart rate was good (0.81). The physiologic response during the 6MPT was 85% to 89% of maximal values, except for minute ventilation (70.6%). Conclusions: For most youth with SB who use a wheelchair for mobility or sports participation, the 6MPT is a reliable, functional performance test on a vigorous level of exercise. Impact: This is the first study to investigate physiologic response during the 6MPT in youth (with SB) who are wheelchair using. Clinicians can use the 6MPT to evaluate functional performance and help design effective exercise programs for youth with SB who are wheelchair using. Keywords: 6-minute push test; adolescent; disabled children; spinal diseases; wheelchairs.
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The Sport Empowers Disabled Youth 2 (SEDY2) project encourages inclusion and equal opportunities in sport for youth with a disability by raising their sports and exercise participation in inclusive settings. It was important to ensure that the authentic views, wishes and feelings of youth with a disability regarding inclusion in sport were attained. Therefore, online focus groups were conducted with youth with a disability, their parents and sport professionals in Finland, Lithuania, Portugal and The Netherlands. During the online EUCAPA 2020 conference the preliminary results of these focus groups were presented.
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This study aimed (1) to examine the contribution of robot ZORA in achieving therapeutic and educational goals in rehabilitation and special education for children with severe physical disabilities, and (2) to discover the roles professionals attribute to robot ZORA when it is used in robot-based play interventions in rehabilitation and special education for children with severe physical disabilities. A multi-centre mixed methods study was conducted among children with severe physical disabilities in two centres for rehabilitation and one school for special education. The participating children played with robot ZORA six times during a period of 6 weeks, in individual or group sessions. Quantitative data were gathered about the contribution of ZORA in reaching individual goals for all of the participating children, using the Individually Prioritized Problem Assessment (IPPA). Playfulness was measured with a visual analogue scale (0–10) and children could indicate whether they liked the sessions using a scale consisting of smileys. Video-stimulated recall interviews were used to collect qualitative data about the different roles of ZORA. In total, 33 children and 12 professionals participated in the study. The results of the IPPA showed a significant contribution of ZORA to the achievement of (children’s) individual goals. The data gathered using the IPPA during the ZORA-based interventions showed that the largest contributions of robot ZORA lie in the domains of movement skills and communication skills. Playfulness of the sessions was 7.5 on average and 93% of the sessions were evaluated as ‘enjoyable’ by the children. Overall, ZORA could positively contribute to the achievement of individual goals for children with severe physical disabilities. According to the participating professionals the most promising roles in which robot ZORA can be used are motivator, rewarder or instructor.
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During the online International Symposium of Adapted Physical Activity (ISAPA) in June 2021 te results of the SEDY2 project were presented. Aim The Erasmus+ Sport Empowers Disabled Youth 2 (SEDY 2) project addresses the topic of encouraging inclusion and equal opportunities in sport. Currently, different terminology about inclusion is being used in different countries, making it difficult to compare findings and to set unilineal goals and targets. In order to tackle the issues that are currently preventing youth with disabilities from participating in sports, the primary purpose of this study is to reach a consensus statement on what inclusive sport truly means. Literature shows that inclusion is a question about individual choice of a sporting activity across a continuum of segregated, integrated and inclusive approaches (Kiuppis, 2018) considered as The inclusion spectrum (Stevenson & Black, 2011). Most of the existing research is not based on the authentic wishes and feelings of children and young people with a disability themselves. Therefore, the main research question is ‘Inclusion in sport: what does it mean in practice?’ Methods To ensure that the authentic views, wishes and feelings regarding inclusion in sport were attained, online focus groups interviews were conducted with children and young people with a disability, their parents and sport professionals in Finland, Lithuania, Portugal and The Netherlands. Data is coded and analysed with Maxqda through the method of thematic content analysis. Results All four countries conducted a focus group with each stakeholder group: children with a disability themselves, their parents and sport professionals. In total 12 focus group interviews were conducted. Preliminary results show that inclusion is about individual needs and wishes and is associated with terms as feeling welcome, taking part, having a choice and equal opportunity. “…it is equal opportunities for all to participate and that, that you are part of like a group and, and that feeling of being part of a group and that you feel welcome.” Focus groups with professionals found that for them inclusion is not the same as inclusion policy. “I think we are talking about the same thing, and we feel the same way, but if we compare that to the inclusion policy or the sports covenant, maybe we are not always talking about the same thing.” All focus groups will be analysed and the results will be presented during the session. Discussion/conclusion Results have been discussed within the SEDY project group with sport organisations, Paralympic Committees and Universities of Applied Sciences to reach internal consensus. In order to tackle the issues that are currently preventing people with disabilities from participating in sports, there is need to reach a broad consensus statement on what inclusive sport truly means. Therefore the next is to discuss the results externally, to reach broad consensus. This can be taken as starting point for actual steps of improvement to include more children with disabilities in sport.
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Aims: To assess the effectiveness of a variety of physical treatments in the management of tension-type headache (TTH) in children. Methods: This review is reported in accordance with the PRISMA guidelines and was registered in the PROSPERO database (CRD42014015290). Randomized and nonrandomized controlled trials that examined the effects of all treatments with a physical component in the management of TTH in children and compared these treatments to a placebo intervention, no intervention, or a controlled comparison intervention were included. The Physiotherapy Evidence Database (PEDro) criteria for bias assessment and the Grades of Recommendation, Assessment, Development, and Evaluation (GRADE) Working Group criteria were used to assess the quality of the body of evidence. The outcome measures were pain, functioning, and quality of life. Only RCTs were included in the meta-analyses. Results: An initial search produced 10,464 published articles. Of these, 17 were relevant trials, including 1,815 participants. The overall GRADE rating of the included studies was moderate, and 11 of the 17 studies could be used in the meta-analyses. The effectiveness of physical treatments in terms of a reduction of pain of 50% or more showed a risk ratio (RR) of 2.37 (95% CI: 1.69 to 3.33). Relaxation training was the most evaluated intervention and proved to be significantly effective (RR: 3.00 [95% CI: 1.94 to 4.63]). In children having TTH combined with temporomandibular disorders, occlusal appliances were effective (RR: 2.58 [95% CI: 1.37 to 4.85]). Conclusion: This review supports the use of physical treatments to reduce pain in children with TTH.
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