This dissertation is a call to place the health of adults with autistic traits and autism-caregivers higher on the agenda of clinicians, researchers, policymakers, and autistic adults and autism... Show moreThis dissertation is a call to place the health of adults with autistic traits and autism-caregivers higher on the agenda of clinicians, researchers, policymakers, and autistic adults and autism-caregivers themselves. Primarily, clinicians should be educated about the increased health risks in autistic adults and autism-caregivers, in order to be able to prevent or recognize these comorbidities timely. This is relevant because of the higher prevalence of both metabolic syndrome and gastrointestinal symptoms in adults from the general population with higher levels of autistic traits, as shown in this dissertation. The associations we found between biopsychosocial factors and respectively metabolic syndrome and gastrointestinal symptoms ask for more psychiatric and somatic integrated care for autistic adults. Future research could use the associations we found between the biopsychosocial model and autistic traits to develop preventive interventions specifically targeted for adults with autism (or higher levels of autistic traits). To make sure future preventive measures and the treatment of physical health problems are effective for this target population to improve their health, barriers in the healthcare for autistic people should be reduced. Therefore, this dissertation also offers recommendations for improvement of primary care, the gatekeeper of adequate healthcare for autistic adults. Show less
The aim of this thesis is to explore fear of choking and fear of falling in people with Huntington's disease (HD) and their caregivers. Dysphagia and falls are common in HD and may lead to fear of... Show moreThe aim of this thesis is to explore fear of choking and fear of falling in people with Huntington's disease (HD) and their caregivers. Dysphagia and falls are common in HD and may lead to fear of choking and fear of falling. However, knowledge about this is mostly lacking, as well as knowledge about the relationship between cognitive and emotional factors and these types of fear. The study confirms that fall prevalence (29% over a 30-day period) and prevalence of dysphagia symptoms (90%) are high. However, a prevalence of about 50% is also reported for fear of choking and fear of falling in people with HD. However, their informal caregivers report the most fear. Severity of dysphagia symptoms was a predictor of fear of choking, and anticipatory awareness of fall risks and gender were found to be predictors of fear of falling. In most individuals with HD, a combination of preventive measures was used.Future research can improve both management of dysphagia and fear of choking and management of falls and fear of falling. Because questioning people with HD is sometimes difficult, due to speech and cognitive difficulties, diagnostic tools may be sought to facilitate this, such as wearable electronic devices. Show less
Introduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of... Show moreIntroduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of nursing home residents with dementia regarding physical therapy.Method: We conducted eleven semi-structured interviews. Thematic analysis was used.Results: Five themes emerged: 1) visibility and familiarity; 2) communication; 3) aim and content; 4) dosage and location; 5) level of expertise and the role of the physical therapist within the interdisciplinary team. Informal caregivers' perceptions of physical therapy included a lack of visibility and familiarity. They needed more communication, and empathic communication skills of the physical therapists. Preferences included physical therapy to be enjoyable, accessible and tailored to the needs of the resident.Conclusion: Physical therapists need to involve informal caregivers in physical therapy care. Implementing shared decision-making will help to get informal caregivers more involved, but has yet to be studied in this setting. (C) 2022 Elsevier Inc. All rights reserved. Show less
Wentink, M.; Bodegom-Vos, L. van; Brouns, B.; Arwert, H.; Houdijk, S.; Kewalbansing, P.; ... ; Meesters, J. 2019
Parents are increasingly viewed as key to successful child (semi-) residential treatment. Positive outcomes for both the parents as the child with a psychiatric disorder are more likely to occur... Show moreParents are increasingly viewed as key to successful child (semi-) residential treatment. Positive outcomes for both the parents as the child with a psychiatric disorder are more likely to occur when effective levels of therapeutic alliances exist between team members and parents. Unfortunately, it remains unclear from the literature, how the establishment of the parent-treatment team alliance best contributes to child residential treatment outcome. Therefore, a more systematic approach is needed to help practitioners.The aim of this thesis is threefold: 1. Development of assessment strategies (instruments) of the parent-team alliance, 2. Longitudinal investigation of the relation between parent-team therapeutic alliance and semi-residential treatment outcome factors and 3. Examining the effect of strengthening the parent-team alliance on (semi-) residential treatment outcomes. Routine Outcome Monitoring was implemented at five semi-residential treatment units of Curium-LUMC, a Centre for Child and Adolescent Psychiatry. All newly admitted children and their parents, 46 children (6-12 years old) in total, were included in the ROM assessment. Results showed: 1)Alliance instruments are capable of assessing the parent-team alliance; 2)Parent-team alliance, parental stress and child'symptoms are interconnected, and 3)A structured investment of team members in the parent-team alliance strenghtens this alliance and positively indfluences childs'symptoms. Show less
