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Researching the Experiences of Children with Cancer: Considerations for Practice.

ABSTRACT: Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as "doubly vulnerable" research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in designing and conducting research with this population; however, these considerations have not been adequately addressed in pediatric healthcare literature. Therefore, the purpose of this review is to describe the research preferences and experiences of children and adolescents with cancer to identify techniques for supporting this population as research participants. By incorporating developmentally appropriate, context-specific, and child-centered adjustments, researchers can help children and adolescents with cancer effectively and meaningfully describe their illness experiences while also developing a positive outlook on future research participation.

SUBMITTER: Boles J

PROVIDER: S-EPMC6721372 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Researching the Experiences of Children with Cancer: Considerations for Practice.

Boles Jessika J Daniels Sarah S

Children (Basel, Switzerland) 20190816 8

Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as "doubly vulnerable" research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in ...[more]

PMID: 31426332

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Project description:Introduction: Evidence supporting the use of music interventions to maximize arousal and awareness in adults presenting with a disorder of consciousness continues to grow. However, the brain of a child is not simply a small adult brain, and therefore adult theories are not directly translatable to the pediatric population. The present study aims to synthesize brain imaging data about the neural processing of music in children aged 0-18 years, to form a theoretical basis for music interventions with children presenting with a disorder of consciousness following acquired brain injury. Methods: We conducted a systematic review with narrative synthesis utilizing an adaptation of the methodology developed by Popay and colleagues. Following the development of the narrative that answered the central question "what does brain imaging data reveal about the receptive processing of music in children?", discussion was centered around the clinical implications of music therapy with children following acquired brain injury. Results: The narrative synthesis included 46 studies that utilized EEG, MEG, fMRI, and fNIRS scanning techniques in children aged 0-18 years. From birth, musical stimuli elicit distinct but immature electrical responses, with components of the auditory evoked response having longer latencies and variable amplitudes compared to their adult counterparts. Hemodynamic responses are observed throughout cortical and subcortical structures however cortical immaturity impacts musical processing and the localization of function in infants and young children. The processing of complex musical stimuli continues to mature into late adolescence. Conclusion: While the ability to process fundamental musical elements is present from birth, infants and children process music more slowly and utilize different cortical areas compared to adults. Brain injury in childhood occurs in a period of rapid development and the ability to process music following brain injury will likely depend on pre-morbid musical processing. Further, a significant brain injury may disrupt the developmental trajectory of complex music processing. However, complex music processing may emerge earlier than comparative language processing, and occur throughout a more global circuitry.

Project description:So far, the large and expanding body of research on meditation has mostly focussed on the putative benefits of meditation on health and well-being. However, a growing number of reports indicate that psychologically unpleasant experiences can occur in the context of meditation practice. Very little is known about the prevalence and potential causes of these experiences. The aim of this study was to report the prevalence of particularly unpleasant meditation-related experiences in a large international sample of regular meditators, and to explore the association of these experiences with demographic characteristics, meditation practice, repetitive negative thinking, mindfulness, and self-compassion. Using a cross-sectional online survey, 1,232 regular meditators with at least two months of meditation experience (mean age = 44.8 years ± 13.8, 53.6% female) responded to one question about particularly unpleasant meditation-related experiences. A total of 315 participants (25.6%, 95% CI: 23.1 to 28.0) reported having had particularly unpleasant meditation-related experiences, which they thought may have been caused by their meditation practice. Logistic regression models indicated that unpleasant meditation-related experiences were less likely to occur in female participants and religious participants. Participants with higher levels of repetitive negative thinking, those who only engaged in deconstructive types of meditation (e.g., vipassana/insight meditation), and those who had attended a meditation retreat at any point in their life were more likely to report unpleasant meditation-related experiences. The high prevalence of particularly unpleasant meditation-related experiences reported here points to the importance of expanding the scientific conception of meditation beyond that of a (mental) health-promoting and self-regulating technique. We propose that understanding when these experiences are constitutive elements of meditative practice rather than merely negative effects could advance the field and, to that end, we conclude with an overview of methodological and conceptual considerations that could be used to inform future research.

Dataset Information

Researching the Experiences of Children with Cancer: Considerations for Practice.

Publications

Researching the Experiences of Children with Cancer: Considerations for Practice.

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