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PURPOSE - The purpose of this study is to identify barriers, facilitators, and consequences of obtaining sufficient sleep in adolescents with type 1 diabetes.
METHODS - Semistructured interviews were conducted with 25 adolescents (52% female, mean age = 15.6 years) and 25 caregivers. Interviews were transcribed and coded using Atlas.ti. A thematic analytic approach was used to identify and organize significant patterns of meaning (themes) and interpret themes across the data.
RESULTS - Several barriers were identified, with the most common being the use of electronics before bed and sleep disturbances related to diabetes management. Caregivers described strategies for helping adolescents achieve sufficient sleep, such as enforcing bedtimes and limiting distractions, but many adolescents could not identify facilitators of sleep. Weekday/weekend discrepancies in sleep timing were commonly disclosed.
CONCLUSIONS - This study is the first to examine the perceptions of barriers and facilitators to obtaining sufficient sleep in adolescents with T1D and their caregivers. Results have the potential to inform providers' recommendations regarding sleep, including possible interventions to promote sleep in this high-risk population.
Pregnancy produces important health-related needs, and expectant families have turned to technologies to meet them. The ability to predict needs and technology preferences might aid in connecting families with resources. This study examined the relationships among Multidimensional Health Locus of Control (MHLC) scores, information-seeking behaviors, and health-related needs in 71 pregnant women and 29 caregivers. Internal MHLC scores were positively correlated with information-seeking behaviors, including website and patient portal use. Higher Chance scores were associated with decreased portal or pregnancy website use (p=0.002), with the exception of FitPregnancy.com (p=0.02). MHLC scores were not significantly correlated with number of health-related needs or whether needs were met. Individuals with needs about disease management had higher Powerful Others scores (p=0.01); those with questions about tests had lower Powerful Others scores (p=0.008). MHLC scores might be used to identify individuals less likely to seek information and to predict need types.
Purpose - The current study compares the relative strength of associations of different adherence measures with glycemic control in adolescents with type 1 diabetes, while highlighting the challenges in using more objective measures (i.e., glucometer data).
Methods - Adolescents with type 1 diabetes ( = 149) and their caregivers completed a questionnaire measure assessing adolescents' adherence (Self-Care Inventory (SCI)) to the diabetes regimen. Adolescents' glucometers were downloaded to determine average blood glucose checks per day, as an objective measure of adherence. A measure of glycemic control (hemoglobin A1c (HbA1c)) was obtained as part of adolescents' regular clinic visits.
Results - Adolescents' self-reported adherence to the treatment regimen was more strongly correlated with HbA1c than caregivers' reports of adherence. In multivariate analyses, both adolescents' self-report of adherence and average blood glucose checks per day (obtained via a glucometer) were significant predictors of HbA1c. Challenges to obtaining glucometer data were identified.
Conclusions - The findings highlight adolescents' self-report of adherence using the SCI as a brief and meaningful measure to understand and improve adolescents' glycemic control, particularly when glucometer data is difficult to obtain.
As the role of genomics in health care grows, patients increasingly require adequate genetic literacy to fully engage in their care. This study investigated a model for delivering consumer-friendly genetic information to improve understanding of precision medicine using health literacy and learning style principles. My Cancer Genome (MCG), a freely available cancer decision support tool, was used as a testbed. MCG content on a melanoma tumor mutation, BRAF V600E, was translated to a 6th-grade reading level, incorporating multiple learning modalities. A total of 90 patients and caregivers were recruited from a melanoma clinic at an academic medical center and randomized to 3 groups. Group A (control) received an exact copy of text from MCG. Group B was given the same content with hyperlinks to videos explaining key genetic concepts, identified and labeled by the team as knowledge pearls. Group C received the translated content with the knowledge pearls embedded. Changes in knowledge were measured through pre and post questionnaires. Group C showed the greatest improvement in knowledge. The study results demonstrate that providing information based on health literacy and learning style principles can improve patients' understanding of genetic concepts, thus increasing their likelihood of taking an active role in any decision making concerning their health.
OBJECTIVE - Mothers of youth with type 1 diabetes experience increased levels of stress and depression related to the burden of diabetes management, but the concept of diabetes distress, or distress linked specifically to diabetes and its management, has not been applied to mothers. The current study examined diabetes distress in relation to maternal depressive symptoms and adolescents' glycemic control.
RESEARCH DESIGN AND METHODS - Mothers of youth with type 1 diabetes (age: 10-16) completed a measure of depressive symptoms and diabetes distress as part of a screening questionnaire. Adolescents' glycosylated hemoglobin (HbA1c) was obtained from medical records.
RESULTS - Mothers' diabetes distress was strongly related to maternal depressive symptoms, and relationship-related diabetes distress was significantly associated with adolescents' HbA1c. In multivariate analyses, maternal depression was the only significant predictor of glycemic control.
CONCLUSIONS - Given the links between mothers' diabetes distress, maternal depressive symptoms, and adolescents' glycemic control, diabetes distress may be important to consider when targeting both maternal and adolescent adjustment to type 1 diabetes.
© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
PURPOSE - The purpose of the current study was to pilot-test a positive psychology intervention to improve adherence to diabetes management in adolescents with type 1 diabetes.
METHODS - A total of 39 adolescents (ages, 13-17 years) with type 1 diabetes and their caregivers were randomized to a positive psychology intervention (n = 20) or an attention control (education) intervention (n = 19). The intervention condition used positive psychology exercises (eg, gratitude, self-affirmation), small gifts, and parent affirmations to boost positive affect. Outcomes included frequency of blood glucose monitoring, quality of life, and glycemic control.
RESULTS - No main effects for treatment were observed at the 6-month follow-up. However, there was a significant association between adolescents' levels of positive affect and measures of adherence, including self-report and meter downloads of glucose monitoring.
CONCLUSIONS - The results from the current study support the assertion that positive affect in the context of diabetes education is an important factor to consider in adolescents with type 1 diabetes.
© 2014 The Author(s).
OBJECTIVE - To describe the care delivery structure and elements used for patient self-care education in ventricular assist device (VAD) programs.
BACKGROUND - Use of VADs as destination therapy and to sustain organ function until cardiac transplantation has increased 517% since 2007. Elements of VAD-specific self-care education have not been described.
METHODS - A 26-item survey measuring VAD self-care education resource use, organizational, employment, behavioral and labor variables was sent to VAD coordinators at all US VAD centers (N = 111) in 2011. Two subsequent mailings yielded a 63% (n = 71) return rate. Analysis included descriptive statistics and cluster analysis.
RESULTS - Element use varied across programs. Reliance on single educational and evaluation methods, and lack of return demonstration were noted. VAD coordinators reported extensive caregiver, hospital provider, and community educational responsibilities in addition to patient self-care education.
CONCLUSIONS - VAD self-care education programs varied by hospital. Future research is needed to determine if specific care delivery structures or elements used in self-care education improve VAD patient outcomes.
Copyright © 2014 Elsevier Inc. All rights reserved.
PURPOSE - Informal care plays an important role in the overall care for people with cancer. This study estimates lost productivity and informal caregiving and associated costs among partner caregivers of localized prostate cancer patients within 1 year after diagnosis.
METHODS - We applied data from the Family and Cancer Therapy Selection study, a three-wave self-administered survey among patients diagnosed with localized prostate cancer and their partner caregivers in multiple clinics in the USA. Time spent was measured by the sum of working hours lost, informal caregiving hours performed, and hours spent on household chores. The national median income for women 55 years or older was used to calculate costs associated with the time spent using the opportunity cost method. Descriptive and bivariate analyses were conducted.
RESULTS - The average working hours decreased from 14.0 h/week (SD = 17.6) to 10.9 h/week (SD = 15.9), without a significant change in responsibility/intensity at work. The mean annual time spent on informal caregiving and household chores was 65.9 h/year (SD = 172.4) and 76.2 h/year (SD = 193.3), respectively. The mean annual economic burden among partner caregivers was US$6,063 (range US$571-US$47,105) in 2009 dollars accounted for by a mean of 276.2 h (range 26-2,146) in the study sample. The time spent on informal caregiving and household chores varied by patient and caregiver characteristics.
CONCLUSIONS - Pilot estimates on non-medical economic burden among partner caregivers (spouses) during the initial phase of the treatment provide important information for comprehensive estimation of disease burden and can be used in cost-effectiveness analyses of prostate cancer interventions.
Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers.
BACKGROUND - Patients with cancer experience multiple neuropsychiatric symptoms. Whereas individual symptoms have been studied in patients with head and neck cancer, the broader context of neuropsychiatric symptoms needs to be explored.
OBJECTIVE - The aims of this pilot study were to (a) determine the caregiver-reported prevalence and severity of neuropsychiatric symptoms in patients with head and neck cancer, (b) determine the associated level of caregiver distress, and (c) describe the effects of neuropsychiatric symptoms on patients and their caregivers.
METHODS - Twenty-three family caregivers of patients with head and neck cancer completed the Neuropsychiatric Inventory Questionnaire and participated in a semistructured interview.
RESULTS - All caregivers reported that patients experienced at least 1 neuropsychiatric symptom (mean, 7.5; range, 1-12). The most frequently reported symptoms were trouble with appetite and eating (95.7%), altered nighttime behaviors (82.6%), depression/dysphoria (78.3%), decreased alertness (69.6%), inattention (60.9%), apathy/indifference (56.5%), anxiety (56.5%), irritability/lability (52.5%), agitation/aggression (52.2%), and slowed behavior (43.5%). The mean severity rating for 9 symptoms was moderate to severe. Most symptoms caused mild to moderate levels of caregiver distress. Qualitative data indicated that neuropsychiatric symptoms negatively affected patients, their caregivers, and other family members. Patients required more caregiver support resulting in increased caregiver burden and distress.
CONCLUSIONS - Neuropsychiatric symptoms are common and troubling in patients with head and neck cancer during treatment. Further investigation of their effects on patients and family caregivers is needed.
IMPLICATIONS FOR PRACTICE - Clinicians should monitor for and treat neuropsychiatric symptoms throughout treatment and provide caregiver and patient education and support.