Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-Source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences

2021 ◽  
Author(s):  
Katarina Braune ◽  
Niklas Krug ◽  
Christine Knoll ◽  
Hanne Ballhausen ◽  
Axel Thieffry ◽  
...  
2017 ◽  
Vol 4 (1) ◽  
pp. 63-74 ◽  
Author(s):  
Jessica A. Chen ◽  
Hollie Granato ◽  
Jillian C. Shipherd ◽  
Tracy Simpson ◽  
Keren Lehavot

2015 ◽  
Vol 4 (3) ◽  
pp. 51-69 ◽  
Author(s):  
Nathan Hodges

Bodyweight—the number on the scale—has been constructed as an objective measure of health, and weight loss as synonymous with healthier. Weight has been used as a way of classifying and controlling people, ignoring the embodied, relational, and cultural meanings attached to health and weight. Instead, these subjective experiences are lumped into a numerical category. Our society's obsession with weight is weighing us down and most of us should toss out our scales. Scale stories offer a departure from canonical narratives about physical health and body image by emphasizing emotions and lived experiences instead of bodyweight and numerical categories.


2021 ◽  
Vol 11 (7) ◽  
pp. 924
Author(s):  
Claudia B. Pratesi ◽  
Alessandra Baeza Garcia ◽  
Riccardo Pratesi ◽  
Lenora Gandolfi ◽  
Mariana Hecht ◽  
...  

Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.


2018 ◽  
Vol 58 (1) ◽  
pp. 42-49 ◽  
Author(s):  
David R. Howell ◽  
Julie C. Wilson ◽  
Michael W. Kirkwood ◽  
Joseph A. Grubenhoff

We conducted a prospective study of children and adolescents (n = 176; mean age = 13.0 ±2.7 years; 38% female) assessed acutely post-concussion and again 30 days later. We investigated the association between symptom burden and quality of life (QOL) outcomes, as well as the effect of age on QOL. We assessed QOL using patient-reported Pediatric Quality of Life Inventory 4.0, and symptoms using the Health and Behavior Inventory (HBI). Acute (<2 days post-injury) HBI ratings demonstrated a low correlation ( R2 = 0.08) with physical health QOL and a moderate correlation with psychosocial health QOL ( R2 = 0.21) 30 days post-concussion. HBI ratings 30 days post-concussion demonstrated a moderately high correlation with physical health QOL ( R2 = 0.35) and psychosocial health QOL ( R2 = 0.57). Age was not significantly associated with physical or psychosocial QOL ratings. Impairments in QOL following concussion may identify children and adolescents who need additional referral to address persistent symptoms at this time.


Author(s):  
Helen Hernandez ◽  
◽  
Laurie Dringus ◽  

We reflect on our process of working with an adapted framework as an effective strategy for analyzing and interpreting the results of our qualitative study on the lived experiences of insulin pump trainers. Interpretative Phenomenological Analysis (IPA) was applied as the overarching research methodology and was encapsulated into a framework adapted from Bonello and Meehan (2019) and from Chong (2019). We describe this framework as the “embodiment of discovery” to posit the researcher’s tangible experience of discovering the meaning of data that also brought transparency to the researcher’s process for data analysis and interpretation. We present challenges the doctoral student researcher experienced working with the framework through three phases and various steps performed during the analysis. We recommend the framework may assist novice researchers as a tool for wayfinding and scoping the structure of data analysis and interpretation. We conclude that novice researchers should not fear finding their “embodiment of discovery” in adapting creative or alternate methods for qualitative analysis.


2021 ◽  
Vol 14 (9) ◽  
pp. e243522
Author(s):  
Khulood Bukhari ◽  
Rana Malek

A 40-year-old woman used an open-source automated insulin delivery system to manage her type 1 diabetes (T1D) prior to conception. The code for building the iPhone application called ‘Loop’ that carried the software for the hybrid closed-loop controller was available online. Her glycated hemoglobin before conception was 6.4%. Between 6 and 12 weeks gestation, she spent 66% time-in-range (TIR), 28% time-above-range (TAR) and 6% time-below-range (TBR). Between 18 and 24 weeks gestation, she spent 68% TIR, 27% TAR and 5% TBR. During her third trimester, she spent 72% TIR, 21% TAR and 7% TBR. She delivered a healthy infant with no neonatal complications. Clinicians should be aware of this technology as it gains traction in the T1D community and seeks Food and Drug Administration approval.


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