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Effect of Delayed-Release and Extended-Release Methylphenidate on Caregiver Strain and Validation of Psychometric Properties of the Caregiver Strain Questionnaire: Results from a Phase 3 Trial in Children with Attention-Deficit/Hyperactivity Disorder.
López, FA, Faraone, SV, Newcorn, JH, Doll, HA, Rhoten, S, Lewis, HB, Khan, TF, DeSousa, NJ, Sallee, FR, Incledon, B
Journal of child and adolescent psychopharmacology. 2021;(3):179-186
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Abstract
Objectives: Inadequately controlled symptoms and associated impaired functioning have a significant negative impact on caregivers of children with attention-deficit/hyperactivity disorder (ADHD). This study aimed to assess the impact of evening-dosed, delayed-release and extended-release methylphenidate (DR/ER-MPH) treatment on caregiver strain, measured by the Caregiver Strain Questionnaire (CGSQ), and present post hoc psychometric analyses assessing the reliability and validity of the CGSQ, its ability to detect change (responsiveness), and to derive responder definitions. Methods: The CGSQ was an exploratory efficacy endpoint in a phase 3, 3-week, randomized, double-blind, multicenter, placebo-controlled, forced-dose titration trial of DR/ER-MPH in children aged 6-12 years with ADHD (NCT02520388). Psychometric properties of the CGSQ evaluated post hoc included internal consistency using Cronbach's alpha; test/retest reliability using intraclass correlation coefficients (ICCs); construct validity (known groups and convergent/divergent validity); responsiveness to changes in assessments of ADHD severity (ADHD Rating Scale-IV [ADHD-RS-IV], Conners' Global Index-Parent [CGI-P], and Clinical Global Impression-Severity [CGI-S]/CGI-Improvement [CGI-I]); and meaningful change threshold (MCT) using receiver operating characteristic curves, which were used to compare response between DR/ER-MPH and placebo groups. Results: Randomized DR/ER-MPH (54.5) and placebo (54.9) groups had similar mean CGSQ scores at screening. Caregivers of children on DR/ER-MPH reported significant reductions in CGSQ scores after 3 weeks of DR/ER-MPH treatment versus placebo (least-squares mean: 41.2 vs. 49.1; p < 0.001). The CGSQ demonstrated strong internal consistency (Cronbach's alpha = 0.93) and good test/retest reliability (ICC = 0.72). Known groups, convergent/divergent validity, and responsiveness were demonstrated from relationships between the CGSQ and the CGI-S, ADHD-RS-IV, and CGI-P. The mean anchor-based MCT for CGSQ total score was estimated as -9.0 (DR/ER-MPH vs. placebo: 53.2% vs. 29.9% p = 0.003). Conclusions: CGSQ scores significantly decreased after 3 weeks of DR/ER-MPH treatment versus placebo, and the CGSQ was found to be a valid and reliable measure of strain in caregivers of children with ADHD. Clinical trial registration identification number: NCT02520388.
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Engaging Caregivers in Health-Related Housing Decisions for Older Adults With Cognitive Impairment: A Cluster Randomized Trial.
Adekpedjou, R, Stacey, D, Brière, N, Freitas, A, Garvelink, MM, Dogba, MJ, Durand, PJ, Desroches, S, Croteau, J, Rivest, LP, et al
The Gerontologist. 2020;(5):947-957
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BACKGROUND AND OBJECTIVES Informal caregivers are rarely as involved as they want to be in the housing decisions of cognitively impaired older adults. Lack of awareness of available options and their benefits and risks may lead to decisions that do not reflect older adults' preferences, and to guilt and regret. We assessed the effect of training home care teams in interprofessional shared decision-making (SDM) on the proportion of caregivers who report being active in this decision. RESEARCH DESIGN AND METHODS In a two-arm pragmatic cluster randomized trial with home care teams working in health centers in the Province of Quebec, we randomized health centers to receive training in interprofessional SDM (intervention) or not (control). Eligible caregivers had made a housing decision for a cognitively impaired adult aged 65 years or older who was receiving services from a home care team. The primary outcome was the proportion of caregivers reporting an active role in decision making. We performed intention-to-treat multilevel analysis. RESULTS We consecutively enrolled a random group of 16 health centers and recruited 309 caregivers, among whom 296 were included in the analysis. In the intervention arm, the proportion of caregivers reporting an active role in decision making increased by 12% (95% CI -2% to 27%; p = .10). After removal of an influential cluster outlier, the proportion increased to 18% (95% CI: 7%-29%; p < .01). DISCUSSION AND IMPLICATIONS Training home care teams in interprofessional SDM increased caregiver involvement in health-related housing decisions for cognitively impaired older adults.
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The impact of a multilevel childhood obesity prevention intervention on healthful food acquisition, preparation, and fruit and vegetable consumption on African-American adult caregivers.
Trude, AC, Surkan, PJ, Anderson Steeves, E, Pollack Porter, K, Gittelsohn, J
Public health nutrition. 2019;(7):1300-1315
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OBJECTIVE To evaluate the secondary impact of a multilevel, child-focused, obesity intervention on food-related behaviours (acquisition, preparation, fruit and vegetable (FV) consumption) on youths' primary caregivers. DESIGN B'More Healthy Communities for Kids (BHCK) group-randomized controlled trial promoted access to healthy foods and food-related behaviours through wholesaler and small store strategies, peer mentor-led nutrition education aimed at youths, and social media and text messaging targeting their adult caregivers. Measures included caregivers' (n 516) self-reported household food acquisition frequency for FV, snacks and grocery items over 30 d, and usual FV consumption in a sub-sample of 226 caregivers via the NCI FV Screener. Hierarchical models assessed average treatment effects (ATE). Treatment-on-the-treated-effect (TTE) analyses evaluated correlation between behavioural change and exposure to BHCK. Exposure scores at post-assessment were based on self-reported viewing of BHCK materials and participating in activities. SETTING Thirty Baltimore City low-income neighbourhoods, USA.ParticipantsAdult caregivers of youths aged 9-15 years. RESULTS Of caregivers, 90·89 % were female; mean age 39·31 (sd 9·31) years. Baseline mean (sd) intake (servings/d) was 1·30 (1·69) fruits and 1·35 (1·05) vegetables. In ATE, no significant intervention effect was found on caregivers' food-related behaviours. In TTE, each point increase in BHCK exposure score (range: 0-6·9) increased caregivers' daily fruit consumption by 0·2 servings (0·24 (se 0·11); 95 % CI 0·04, 0·47). Caregivers reporting greater social media exposure tripled their daily fruit intake (3·16 (se 0·92); 95 % CI 1·33, 4·99) and increased their frequency of unhealthy food purchasing v. baseline. CONCLUSIONS Child-focused community-based nutrition interventions may also benefit family members' fruit intake. Child-focused interventions should involve adult caregivers and intervention effects on family members should be assessed. Future multilevel studies should consider using social media to improve reach and engage caregiver participants.
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Caregiver's readiness for change as a predictor of outcome and attendance in an intervention programme for children and adolescents with obesity: a secondary data analysis.
Anderson, YC, Dolan, GMS, Wynter, LE, Treves, KF, Wouldes, TA, Grant, CC, Cave, TL, Smiley, AJ, Derraik, JGB, Cutfield, WS, et al
BMJ open. 2019;(3):e023195
Abstract
OBJECTIVE/DESIGN It remains unclear as to the efficacy of readiness for change measurements in child and adolescent obesity intervention programmes. This observational study aimed to determine whether the caregiver's stage of change could predict outcome and adherence to treatment in an intensive intervention programme for children and adolescents with obesity. SETTING Participants were from the Whānau Pakari randomised clinical trial, a community based multi-disciplinary intervention programme for obesity in Taranaki, New Zealand. PARTICIPANTS Eligible participants (recruited January 2012 to August 2014) were aged 5-16 years and had a body mass index (BMI) ≥98th centile or BMI >91st centile with weight-related comorbidities. INTERVENTIONS This study only assessed participants randomised to the high-intensity intervention programme (6-month assessments with weekly group sessions for 12 months) given attendance data were required (n=96). PRIMARY AND SECONDARY OUTCOME MEASURES Primary trial outcome was BMI SD score (SDS). Secondary outcome measures included indices such as fruit and vegetable intake, 550-m run/walk time and quality of life scores. At baseline assessment, participants (if >11 years old) and their accompanying adult were assessed for readiness to make healthy lifestyle change. RESULTS A quantitative measure of stage of change in caregivers was not a predictor of primary or secondary outcomes (change in BMI SDS pre-contemplation/contemplation -0.08, 95% CI -0.18 to 0.03, action -0.16, 95% CI -0.27 to -0.05, p=0.27), or overall attendance in the weekly activity sessions (40.0% vs 37.1%, respectively, p=0.54) in the child or adolescent. CONCLUSIONS Caregiver's stage of change was not a predictor of success in this multi-disciplinary assessment and intervention programme for children and adolescents with obesity. Future research needs to determine participants' factors for success. TRIAL REGISTRATION NUMBER ANZCTR12611000862943; Post-results.
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Familial psychosocial risk classes and preschooler body mass index: The moderating effect of caregiver feeding style.
Horodynski, MA, Brophy-Herb, HE, Martoccio, TL, Contreras, D, Peterson, K, Shattuck, M, Senehi, N, Favreau, Z, Miller, AL, Sturza, J, et al
Appetite. 2018;:216-224
Abstract
BACKGROUND Early child weight gain predicts adolescent and adult obesity, underscoring the need to determine early risk factors affecting weight status and how risk factors might be mitigated. Socioeconomic status, food insecurity, caregiver depressive symptomology, single parenthood, and dysfunctional parenting each have been linked to early childhood weight status. However, the associations between these risk factors and children's weight status may be moderated by caregiver feeding styles (CFS). Examining modifiable factors buffering risk could provide key information to guide early obesity intervention efforts. METHODS This analysis used baseline data from the Growing Healthy project that recruited caregivers/child dyads (N = 626) from Michigan Head Start programs. Caregivers were primarily non-Hispanic white (62%) and African American (30%). After using latent class analysis to identify classes of familial psychosocial risk, CFS was tested as a moderator of the association between familial psychosocial risk class and child body mass index (BMI) z-score. RESULTS Latent class analysis identified three familial psychosocial risk classes: (1) poor, food insecure and depressed families; (2) poor, single parent families; and (3) low risk families. Interactive effects for uninvolved feeding styles and risk group indicated that children in poor, food insecure, and depressed families had higher BMI z-scores compared to children in the low risk group. Authoritative feeding styles in low risk and poor, food insecure, and depressed families showed lower child BMI z-scores relative to poor, single parent families with authoritative feeding styles. CONCLUSIONS Uninvolved feeding styles intensified the risk and an authoritative feeding style muted the risk conferred by living in a poor, food-insecure, and depressed family. Interventions that promote responsive feeding practices could help decrease the associations of familial psychosocial risks with early child weight outcomes.
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Shared heart failure knowledge and self-care outcomes in patient-caregiver dyads.
Bidwell, JT, Higgins, MK, Reilly, CM, Clark, PC, Dunbar, SB
Heart & lung : the journal of critical care. 2018;(1):32-39
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BACKGROUND Patient's knowledge about heart failure (HF) contributes to successful HF self-care, but less is known about shared patient-caregiver knowledge. OBJECTIVES The purpose of this analysis was to: 1) identify configurations of shared HF knowledge in patient-caregiver dyads; 2) characterize dyads within each configuration by comparing sociodemographic factors, HF characteristics, and psychosocial factors; and 3) quantify the relationship between configurations and patient self-care adherence to managing dietary sodium and HF medications. METHODS This was a secondary analysis of cross-sectional data (N = 114 dyads, 53% spousal). Patient and caregiver HF knowledge was measured with the Atlanta Heart Failure Knowledge Test. Patient dietary sodium intake was measured by 3-day food record and 24 h urine sodium. Medication adherence was measured by Medication Events Monitoring System caps. Patient HF-related quality of life was measured by the Minnesota Heart Failure Questionnaire; caregiver health-related quality of life was measured by the Short Form-12 Physical Component Summary. Patient and caregiver depression were measured with the Beck Depression Inventory-II. Patient and caregiver perceptions of caregiver-provided autonomy support to succeed in heart failure self-care were measured by the Family Care Climate Questionnaire. Multilevel and latent class modeling were used to identify dyadic knowledge configurations. T-tests and chi-square tests were used to characterize differences in sociodemographic, clinical, and psychosocial characteristics by configuration. Logistic/linear regression were used to quantify relationships between configurations and patient dietary sodium and medication adherence. RESULTS Two dyadic knowledge configurations were identified: "Knowledgeable Together" (higher dyad knowledge, less incongruence; N = 85, 75%) and "Knowledge Gap" (lower dyad knowledge, greater incongruence; N = 29, 25%). Dyads were more likely to be in the "Knowledgeable Together" group if they were White and more highly educated, if the patient had a higher ejection fraction, fewer depressive symptoms, and better autonomy support, and if the caregiver had better quality of life. In unadjusted comparisons, patients in the "Knowledge Gap" group were less likely to adhere to HF medication and diet. In adjusted models, significance was retained for dietary sodium only. CONCLUSIONS Dyads with higher shared HF knowledge are likely more successful with select self-care adherence behaviors.
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The effect of a practical nutrition education programme on feeding skills of caregivers of children with cerebral palsy at Muhimbili National Hospital, in Tanzania.
Mlinda, SJ, Leyna, GH, Massawe, A
Child: care, health and development. 2018;(3):452-461
Abstract
BACKGROUND Feeding children with cerebral palsy (CP) is challenging and can lead to poor health outcomes. Using a facility-based intervention, we assessed the effect of a practical nutrition programme on feeding skills in caregivers of children with CP attending a pediatric clinic in urban Tanzania. METHODS A randomized-controlled intervention study, involving 2-block stratified sample of under-5 CP children attending a specialized pediatric clinic at the Muhimbili National Hospital was done. One hundred ten moderate-to-severe, new and follow-up cases of children with CP were randomly allocated to the intervention (N = 63) and control groups (N = 47). A short nutrition education on feeding and positioning skills was provided to caregivers and occupational therapy sessions to CP children. Bivariate and multivariable logistic regression analyses of collected data were done. Statistical significance was assessed at p < .05. FINDINGS The intervention significantly improved feeding skills of caregiver in the select indicators assessed. More caregivers appropriately positioned the children (AOR = 5.29; 95% CI: 2.00-13.96), fed children slowly (AOR: 5.17, 95% CI: 1.99-13.44), and involved the child during the feeding process (AOR = 3.46; 95% CI: 1.42-8.44). During feeding, caregiver's reported being less stressed (AOR = 2.53, 95% CI: 1.04-6.13) and the child's mood was more likely to be reported as improved (AOR = 3.15, 95% CI: 1.33-7.474). Although changes were observed in oral motor feeding skills (AOR = 1.67; 95% CI: 0.72-3.91) and functional feeding skills (AOR = 2.28; 95% CI: 0.86-6.06), they did not reach statistical significance in the multivariable models. CONCLUSION Strengthening nutrition education and services for caregivers of children with CP has great value in the care of children with special needs and may improve the health outcomes of children as well as reduce stress among parents/caregivers.
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A Web-based module and online video for pain management education for caregivers of children with fractures: A randomized controlled trial.
Golden-Plotnik, S, Ali, S, Drendel, AL, Wong, T, Ferlisi, F, Todorovich, S, Canton, K, Miller, M, Younan, J, Elsie, S, et al
CJEM. 2018;(6):882-891
Abstract
UNLABELLED IntroductionOver 80% of children experience compromise in functioning following a fracture. Digital media may improve caregiver knowledge of managing fracture pain at home. OBJECTIVES To determine whether an educational video was superior to an interactive web-based module (WBM) and verbal instructions, the standard of care (SOC). METHODS This randomized trial included caregivers of children 0-17 years presenting to the emergency department (ED) with non-operative fractures. Primary outcome was the gain score (pre-post intervention) on a 21-item questionnaire testing knowledge surrounding pain recognition and management for children with fractures. Secondary outcomes included survey of caregiver confidence in managing pain (five-item Likert scale), number of days with difficulty sleeping, before return to a normal diet, and work/school missed. RESULTS We analyzed 311 participants (WBM 99; video 108; SOC 104) with a mean (SD) child age of 9.6 (4.2) years, of which 125/311 (40.2%) were female. The video (delta=2.3, 95% CI: 1.3, 3.3; p<0.001) and WBM (delta=1.6; 95% CI: 0.5, 2.6; p=0.002) groups had significantly greater gain scores than the SOC group. The mean video gain score was not significantly greater than WBM (delta=0.7; 95% CI: -0.3, 1.8; p=0.25). There were no significant differences in caregiver confidence (p=0.4), number of absent school days (p=0.43), nights with difficulty sleeping (p=0.94), days before return to a normal diet (p=0.07), or workdays missed (p=0.95). CONCLUSIONS A web-based module and online video are superior to verbal instructions for improving caregiver knowledge on management of children's fracture pain without improvement in functional outcomes.
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Influence of wellness education on first-line icotinib hydrochloride patients with stage IV non-small cell lung cancer and their family caregivers.
Yanwei, L, Minghui, F, Manman, Q, Zhuchun, Y, Dongying, L, Zhanyu, P
Current problems in cancer. 2018;(3):358-366
Abstract
OBJECTIVE This study aims to examine the effects of wellness education (WE) intervention on the behavioral change, psychological status, performance status on patients with stage IV non-small cell lung cancer (NSCLC) undergoing icotinib hydrochloride treatment and their relationships with family caregivers. METHODS We conducted an intervention study involving 126 individuals with confirmed activating epidermal growth factor receptor mutation-positive stage IV NSCLC who received icotinib hydrochloride as first-line therapy between January 2014 and January 2016; their caregivers were also included in the study. For a period of 12 weeks, participants were randomly assigned into WE and control groups. The patients and family members in the WE group were provided with WE information about treatment, diet, social needs, rehabilitation, physical/mental health education, communication strategies, and patient care advice at least 3 times per week during treatment. Qualitative feedback of the participants was recorded during the intervention. Food Composition Database, the Family Environment Scale, patients/caregivers quality-of-life (Functional Assessment of Cancer Therapy-Lung/Caregiver Quality of Life Index-Cancer Scale), and Hospital Anxiety and Depression Scale (HADS) were measured at baseline and for 12 weeks. Data were analyzed to compare the different outcomes. RESULTS Of the 126 caregivers (64 WE and 62 control), 120 completed the study. We observed significant differences between the WE group and control group with respect to low daily calorie intake (31.0% vs 77.4%, p < 0.05), smoking cessationaaa and awareness of cancer (85.48% vs 100%, p < 0.05). The WE group showed high ratings on awareness of cancer risk and benefit, as well as confidence relating to the behaviors of healthful diet and self-motivation to conduct cancer test. Family caregivers had high ratings on 30-minute daily moderate physical activity (p > 0.05). After 12 weeks, WE intervention had improved scores on Functional Assessment of Cancer Therapy-Lung-EWB and Caregiver Quality of Life Index-Cancer Scale adaptation. In addition, the patients also showed improvements in HADS. CONCLUSION WE interventions in patients with stage IV NSCLC undergoing icotinib hydrochloride treatment and their family resulted in strong intentions to engage in health-promoting behaviors related to physical activity, smoking cessationaaa, and nutrition at the treatment period. WE intervention is a viable way to improve quality of life and HADS. PRACTICE IMPLICATIONS Findings from this study suggest that WE interventions in patients' family with stage IV NSCLC undergoing icotinib hydrochloride treatment are significant improvements in both HADS and quality of life. These data also indicate that lung cancer disparities are unlikely to be associated with differential willingness to receive care but that Chinese may perceive financial and insurance ebarriers to treatment.
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Patient and Family Caregivers' Experiences of Living With a Jejunostomy Feeding Tube After Surgery for Esophagogastric Cancer.
Halliday, V, Baker, M, Thomas, AL, Bowrey, D
JPEN. Journal of parenteral and enteral nutrition. 2017;(5):837-843
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BACKGROUND Jejunostomy feeding tubes (JFTs) can be used to provide nutrition support to patients who have had surgery for esophagogastric cancer. Although previous research reports how patients cope with a gastrostomy tube, little is known about the impact of having a JFT. The aim of this qualitative study was to explore how patients and their informal caregivers experience living with a JFT in the first months following surgery. METHODS Participants were purposively sampled from a cohort of patients recruited to a trial investigating home enteral nutrition vs standard care after esophagogastric surgery for cancer. The sampling framework considered age, sex, and marital status. Informal caregivers were also invited to participate. Interviews were audio recorded, transcribed verbatim, and anonymized. Inductive thematic analysis was used to identify key themes related to living with a JFT. RESULTS Fifteen patient interviews were conducted; 8 also included a family caregiver. Analysis of the data resulted in 2 main themes: "challenges" and "facilitators" when living with a JFT. While "physical effects," "worries" and "impact on routine" were the main challenges, "support," "adaptation" and "perceived benefit" were what motivated continuation of the intervention. CONCLUSION Findings suggest that participants coped well with a JFT, describing high levels of compliance with stoma care and the feeding regimen. Nonetheless, disturbed sleep patterns and stoma-related problems proved troublesome. A better understanding of these practical challenges, from the patient and family caregiver perspective, should guide healthcare teams in providing proactive support to avoid preventable problems.